Hi Valleyboy,
I can't give any advice re chemo as we haven't been on that treatment but we have just about had everything else. At the moment on Abbiraterone/ Raduim 223/ and Zolodex .
Those first agonising weeks and months after diagnosis are still so fresh in my mind but they do get better and especially after you hear of stories a bit like our own Trevor was diagnosed 4 years in May with Ext bone mets and a PSA of 13000 . He is still here a bit wobbly around the edges but still driving / walking even helping doing gardening last weekend and that is nearly 4 years after being diagnosed.
Hope this helps.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
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Just back from meeting with oncologist and video call to the nurses in Bristol. Bloods all ok for 6th and final Radium 223 treatment on the 27th. Then if all goes well, other than another full blood test on the 11/02/19 and a scan sometime in late March it’s a 3 month treatment holiday for me. Yippee!!
We had a Brief discussion on way ahead, which may include immunotherapy, various trials etc etc. All to be discussed in more detail in March/19.
Also 2 year diagnosis anniversary during 1st week of Feb so as Delia once said “cmon let’s be havin yer”!!😂
Nadolig Llawen a Blwyddyn Newydd dda. = Merry Xmas and a Happy NewYear —to all.
Keep the Faith
J.
User
Hi Valleyboy
Don't know if it's the Welsh valleys but, if so, a special welcome to another Taff. It is rough that you find yourself here but the forum is a brilliant source of advice and humour (often of the dubious variety) and knowledge so you are absolutely in the right place.
My OH is 65 with advanced PCa and multiple mets plus a history of depression and anxiety which doesn't help. He's been helped enormously by a very active hospice care team who, once he let them through the door (took a lot of persuasion) have been absolutely fantastic in helping him deal with both the physical and psychological aspects of the diagnosis and the disease. Don't know what we'd have done without them. So if you aren't already linked up to a palliative care nurse/doctor, please do ask your GP or consultant for an immediate referral - and then take advantage of all they have to offer. The brilliant thing about them is that they respond to you as a person rather than as a patient. So my OH likes going to the pub for a pint, and he likes cycling. Rather than telling him to stop either of those options (both very very important for his general well-being) they've encouraged both - within reason of course - and are constantly adapting the various tablets he's on in order to help him live as normal a life as possible. Plus it's fantastic to know that they are there and ready to leap in day or night if we need them, as we often do.
In terms of treatments, the Toolkit that you can download or send for from this site is very helpful but it's also useful to ask members about their experiences direct. As Julie has said, CoIU_FC's chemo blog is really helpful plus you will find other men with very high PSA results who are still going strong - Sallyyy's husband is just a few months ahead of you and has just finished chemo which has brought his PSA tumbling down for example.
Although the awfulness of the diagnosis never goes away, things will get calmer I promise you. Particularly once the chemo is underway and having an impact on the cancer. At the start things just feel out of control but it does improve. Especially, in our view, with the odd pint!
Pob lwc. Take care.
Eleanor
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hi Valley boy baldyman here,
i have had 3 chemo sessions with a fourth next week, for me i have had no sickness and feel ok, last week however i picked up a viral infection that has been treated with anti biotics.
I cannot say that everyone feels ok but there is plenty of support out there, there will be good and bad days but chin up mate, my psa was 242 its down to 19 !!! and i am a T4
take chemo as you find it mate its not as bad as it used to be
take care
Baldyman
User
Valleyboy, I've just had my second infusion and there were no side effects worth a mention over the three weeks. First week if pushed, I would confess to a bit lacking in energy and a bit headachy behind the eyes, but trivial, really. Second and third weeks, completely back to normal. My blood results were normal and my PSA was knocked back markedly. So I'm a happy Easter bunny! Hope it goes as well for you, too.
AC
User
Hi valleyboy,
Looking at your posts you seem to be on top of things and keeping positive- the way to go! You'll see from my profile I've T3cm1no with some mets in bones, god almost 2 years ago! Time flys when your having fun or chemo at least! I got through it pretty well with changing wee bit of diet, exercise and work, but kept a bit of wine and IPA (brains SA) for you. As everyone says watch out for the last couple of sessions because tiredness really can come on then. After that it takes time for your body you recover. Listen to it.
Hope it all goes well for you and keep positive! You need the six nations for next year!
Steven
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Days8/9 (chemo/1)---still all ok with pain tablets down to "as required" instead of every 6 hours--therefore only needed 2 yesterday, whilst so far none today. 3rd hormone injection today and prior to receiving it Tuesdays blood tests indicated all ok for injection--however there was also a 'small win' in that for the past two years I've been pre-diabetic (47), which then rose to 49 (diabetic), at the same time my elevated PSA was diagnosed, (Feb/17). Today my blood sugar reading was 40!! So no diabetes treatment now required as readings are well under the proscribed level. Please note I think this must be down to my dramatic diet change over the past 3 months, i.e. No processed foods, plenty of fruit and veg, no red meat and soya substitutes instead of most dairy, plus no alcohol??? This combined with daily exercise, either walking and/or stationary spinning bike, has resulted in a weight loss of 2 1/2 stone, which, as stated previously was needed!! So all in all a good day, let's hope it lasts?
User
You'll get the slimmer of the month prize if you keep this up! Really impressive - well done you. I on the other hand have taken to comfort eating, comfort drinking and comfort sitting on the sofa.
E
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Originally Posted by: Online Community MemberPs--I've just read Dave Stuart's post from the 3rd May 2017, very encouraging to know about other treatments and I really like his "strap line" too---especially the bit about " incurable but treatable"-----thanks for that Dave.
Thanks
Keep going strong Valley boy,
There are many years ahead for you
Regards
Dave
"Incurable cancer does not mean it is untreatable and does not mean it is terminal either" |
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Hi Valleyboy,
Sorry i can't help with your questions but hope i can give you my support and best wishes with your treatment, chin up mate and keep fighting.
John.
User
With advanced PCa, many oncos will say the PSA score is less important than how you feel. You started high; downward trends are good, upward trends are bad, and apart from that, go with your gut. I think Trevor has been in the 3000s for quite a while now, and there are others trundling along with numbers that for other men would be really bad news.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Ok--see thread above for my history to date----PSA in March = 1571 = Advanced PCa with bone mets---- PSA now= 225------As stated above I finished my initial 6 chemo infusions in July and am now on just hormone injections (degaralix), every 4 weeks for life.
Just had a 'way ahead' meeting with my Onco who states that there is no change in last weeks body scan from my scans in March so all ok there,-- my testosterone is still surpressed so all ok there, liver function test satisfactory, --blood glucose test satisfactory, (no diabetes issues).
--Additional PSA test taken today with result back next Monday, (18th), she will then phone me with result and if it's the same and/or lower than in July then I ll be going on a 3 month treatment holiday with my next onco appointment booked for 11/12/17.
However if it's higher then depending on the number she ll be considering additional hormone treatment in tablet form, not abi or enzo at this stage but if required they are options for later.
Also told me to stop taking steroids from tomorrow so that's me (with regard to PCa), tablet free!!
So dependant on PSA Nos next week my new regime could be just hormone injections every 4 weeks coupled with 3 monthly PSA checks?
My General Heath is fine, I'm back playing golf at least twice a week, coupled with walking/cycling as required. So all in all a positive outlook ----let's just hope I've hammered the PSA too??
All the best J.
User
See above thread--Onco just phoned 3 days early!!! But all ok as my Sept PSA has halved to 112 and she even expects it to reduce further by December,!! so unless anything untoward happens that's me off chemo and steroids till at least 18/12/17. Obviously I ll keep you all posted as/when applicable, but as I haven't had a pint since January I'm just off out to reacquaint myself with a Guinness??
Take care all, J. 😀
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Hi all see above threads re my PCa history— -just been down the surgery for my (11th) Degaralix hormone injection, and whilst I was there I picked up my latest blood test results, which were taken on Monday due to the fact that I’ve had a nasty cough for the past 10 days, with antibiotics prescribed for 7 days from Monday. Anyway to cut a long story short, the cough is now starting to break, and my PSA is down to 94!! Which is the 1st time it’s been in double figures since diagnosis in March (1547)!! Also all my other comprehensive blood tests are in the normal range so what’s happening here? Been off chemo and steroids now since August/Sept yet PSA continues to fall. As stated previously I’m back to see my onco on the 18th Dec, so let’s hope my PSA continues to fall which means I may get another extension to my treatment holiday?
So it’s early “seasons greetings” from me, and let’s just hope I’ve managed to put the big C back in its box for a while longer.
All the best
Valleyboy.
User
Hopefully it will be a long while before you need to think about Ac-225 - they may have brought out a cheaper Porsche by then
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Thebear
Rhymney valleyboy me so Hang on in there, sorry don’t know enough about Crohns to offer any advice re-chemo or not. Except to say that I’ve had 13 infusions without many problems and I’ve got extensive mets. spread.
However as you ll hear many times on this forum we re all individuals and all cope with things differently. So speak with your consultant and if you both feel it’s right for you go for it. Try not to fret too much, as I too have down days, but you’ve got to keep on top of it as much as you can, and I’m a firm believer in PMA—positive mental attitude. Which definetly helps me cope with the day to day pressures of APca.
J.
John
Thanks for your comment, travelling not too bad as one of my friends from golf drives!! Also I’ve got a few other drivers from the golf and rugby club in reserve so if I fancy a kip on the way back so be it!
Also been really lucky with the traffic so far, no hold ups on way to or back from Bristol 4 times so far, so door to door in app. 2 hours.
Loads of parking within minutes of the hospital so no issues there either. Staff brilliant too even tho they are from the wrong side of Offas Dyke!😂
J.
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Quick update. Day 10 on Enzo and severe aches and pains gone. Played golf yesterday (1st time in over 3 weeks and all ok). Also now that the pain has gone I’m much much better in myself and looking forward to walking the dog later.
C T scan on 4th March, followed by Oncologist review of same and decision on wether to stay on Enzo on the 11th. Full bone scan on 14th to review how well/not Radium 223 has worked. God bless the NHS.
I ll update accordingly after receipt of scan results.
Keep the Faith
J.
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Met with Onco this morning and although my Hb Readings are down its still ok for chemo No 17 on Monday. Also a decision will be made then as to wether i need another blood transfusion on Wednesday. We also discussed the way ahead, and whilst I’m still booked in for at least 2 more Docetaxel infusions. I may then be going onto the Lutetium 177 trial in Bristol. If accepted I ll get a Full Pet/Ct scan prior to any treatment to see if I’ve got the right receptors for treatment. On the down side my Onco who has treated me since day 1 has informed me that’s shes leaving the hospital in September for pastures new. So let’s just hope her successor is just as good?
Anyway that’s all for now I ll update as/when applicable.
Ps
Re my Pen Y Fan Charity ride/climb. over £3500 raised so far, (for the chemo unit in my local hospital).
Keep the Faith
J.
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I hope you get on the trial Valleyboy, no one deserves that chance more. You a a real role model
Lots of love
Devonmaid
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Well it’s the morning after the night before!!
Had my Lutetium treatment in Windsor yesterday, and so far no issues.
3 hours to Windsor in private hire car. Approx 4 hours in treatment room, (Inc. lunch), 3 hours back. So long but relaxing day.
Constipation also cleared this morning which is another bonus.
Don’t know if it psychological but on waking I currently have no pain at all? No chest, leg, hip, or rib pain which has been bugging me for over a week.
Just had my morning tabs with the addition of 4 times deximethazone, which I new take at 4 per day for 3 days, the 3 per day for 4 days.
Also supplied with some antibiotics to take if I develop any water infection.
So at the moment it’s onwards and upwards? With full bloods required in 2 and 4 weeks time to check if I’m still eligible for infusion 2 in approx 6 weeks time.
Anyway just off for a jog and a game of golf, neither of which I’ve been able to do since March??(only joking)!! Gonna take it easy and see how things develop.
Thanks for all the good wishes and I ll update as/when applicable.
Keep the Faith
J.
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Good to hear your news Valleyboy.
Interesting that you are taking Dexamethasone. They have not prescribed anything in my case
Your lack of pain also mirrors my experience
Delighted to see you are back on the golf course.
Regards
Dave
"Incurable cancer does not mean it is untreatable and does not mean it is terminal either" |
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Hi all,
I've just been diagnosed, (end of Feb),, with advanced prostate cancer--PSA 1500---Gleason score 8----T3, which has spread to my spine, ribs and skull???
I've already started on hormone therapy and will be starting chemo in app 2 weeks. At the moment for my age (64), and by taking ibuprofen and co-codamol as needed, I feel fit and healthy, and I'm still walking miles, or indoors cycling, (if wet)!! prior to the end of Feb I was just merrily trundling along with my life, playing regular golf, both home and abroad, watching rugby and having a few pints, (none since diagnosis)?? I've also completely changed my diet, with no processed foods etc which have been replaced with plenty of fruit and veggies?! As a result ive already lost 1 1/2 stone ( which was needed), and feel better for it.
However, since getting this diagnosis, which was a shock, my "head is in the shed" so any info/advice etc. from other forum members who have been down a similar road would be well appreciated--Thanks.
User
Hello Valleboy and welcome to the forum although sorry you find yourselfhere. I'm afraid I don't have the experience to help you here but some others with similar stories will no doubt post soon. ColU_FC in particular has written some very informative posts about Chemo and Irun about the ultra marathons he still manages despite his diagnosis. If you click on the members tab you can search for them and take a read of their bio's and posts which may help.
All the best
Julie
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Thanks for replies above--just been confirmed that I now attend my local hospital on Monday, 10th April, for pre-assessment visit and "bloods", with chemo (6 cycles every 3 weeks), then scheduled to start on Tuesday. I have also been informed that I will continue with my current hormone treatment' (Dergarelix), during these cycles. As with others before me on this forum I'm hoping to post regular updates as to my progress, ----1) to help other 'newbies' who are also just embarking on this road, and 2) to help me remember how I feel/felt during each 3 week cycle---still can't believe this is happening to me, as up until the end of January apart from a few aches and pains which unfortunately I put down to the aging process, coupled with golf 2/3 times a week, and cutting over an acre of grass without a ride-on mower, I feel fine??? However here goes and I start with some words from my favourite film "The Gladiator" ------"on my command unleash hell"!!!!!!!!!!!
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I hope the chemo does it's job and that you have minimal side effects. I am 7 treatments in of 20 on salvage radiotherapy.
The people on this forum are invaluable to each other as a source of support, inspiration and knowledge. The replies I had about salvage radiotherapy were really welcome and useful to me.
Like you I am visualising in this case the radiation unleashing all sorts on my tumours, take that you ...........!
Best wishes, Ido4
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Not sure about the "on my command" bit but on here, any mention of ride on mowers can unleash a kind of hell :-) Good luck to you over the next few weeks and months
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Good luck with the chemo, my OH had 6 session this time last year and had very few side effects .he still worked everyday just at a slower pace .Nearly 1 year on his PSA is 0.01 undetectable.I hope your as lucky
Best wishes
Debby
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Ok here goes--see original post to see where I'm coming from----just had 1st chemo (Docetaxel) session today (10.30-15.00), consisting of saline drip/steroid drip then chemo infusion.
Also been given steroid tabs to take for next 3 weeks till next chemo cycle.
I realise it's still early in the treatment plan but At the moment I feel fine, been out for a shortvwalk, with no sickness, appetite or taste loss. Also told to carry on with current tablet regime and add others given today at prescribed times, that means I'm now on 12 tabs a day!!! All being well i ll update you all tmos
Cymru am byth Eleanor!!--(Valleys Wenglish)!!!!
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Fingers crossed that all goes smoothly for you. Good to have another (potential) Welsh rugby supporter on the site... lots of otherwise lovely folk here who prefer to cheer for the English team. How weird is that!
Take care.
Eleanor
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Another Valley boy here butty.
Born in Llwynipia hospital . Lived at Clydach Vale (Tonypandy) till we moved to England
All the best to you.
Ray and family.
Edited by member 12 Apr 2017 at 16:53
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Thanks for the replies I find they really help----
Day 2 (of chemo/1) update---no issues at all---food still tasting fine, 30 mins on spinning bike this morning, whilst this afternoon I changed the fuel pipe and plug on the mower, drained out the old fuel and cut the lawn!!!! I know I know, take it easy, but at the moment the steroids seem to be giving me so much energy I may even go back out later and cut the other lawn in the dark!!!!! Well maybe not, as I've now settled down to watch the footie with a nice bottle of no-alcohol Stowford Press!!!!! Not quite like the real thing but I've made a conscious decision not to drink until I finish the chemo cycles so I'm going to stick to it, the boys down the rugby and golf clubs can't believe it!! Anyway onward and upwards and let's see what tomorrow brings.
User
Days 6/7--(chemo/1) update---all ok over last two days, out walking both days and cut the lawn this afternoon. Glad to be back to "normal" as I've got Blood test tmos for next hormone injection on Thursday.
User
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Hi Valley Boy,
I see you are planning to travel in W Wales in your camper, is that where you live. have you come across WW Prostate Cancer Support Group. they have a web site. We live in W.W.and we go to the group lunches and meetings, if you are a member see you there if not you would be very welcome.
Leila
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Days 13/14/15 (chemo/1) all still ok, walking, cycling as normal--minor aches and pains but nothing of concern--in fact no pain tabs needed for past 3 days? Hopefully Chemo, hormones and steroids doing their job there--just cut grass again with no ill effects, so with only another week to go till I start chemo/2, it looks as if I'm coping ok, (let's hope that statement doesn't come back to haunt me)?? I feel my Diet changes and exercise definetly helping as I'm now 2 1/2 stone lighter than I was in January, and feel much better for it!!!! Anyway just off out to re stock on more green veg, salad, whole grain brown bread etc etc. Just read Jane Plants diet book, bit severe, but there's a few things in there that I'm also going to take on board.
User
Ok--days 16-21 (chemo/1) all ok- no undue side effects, so it looks as if I've got through chemo/1 unscathed?? even my beard which I shaved off 3 weeks ago has grown back!!
Start chemo/2 tmos and whilst I'm still going to maintain this blog for reference purposes, unless any side effects kick in, which I will comment on immediately, it will now be on a weekly/as required basis. Hope everyone out there is battling on, stay strong, the summers on its way which for us in Wales usually means one day of glorious sunshine sometime between June and August, interspersed with the occasional shower!!!!!!! Then again thankfully I do live on the right side of Offas Dyke so I can't complain can I?? Take care---J.
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Good on you Valleyboy! Hope the next session goes as smoothly and that your beard grows ever fluffier. My brother ended up with curly hair when his grew back so you never know...
E
x
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Glad for you, Valleboy.
Wishing you continue to carry on well with your chemo... And your beard to grow back splendid.
All the best for you,
Lola.
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Valleyboy, I've just had my third infusion and a further good reduction in PSA, so a very happy bunny. The pattern with me is now - first week headaches and slightly nauseous but not disabling in any way; second week much improved energy level and side effects after 7-9 days; third week back to normal.
My wife says my chest and back are as smooth as a baby's bum, but beard and hair on top of head, such as there is, entirely unaffected. I guess we are all affected differently.
Hope your treatment continues as smoothly as mine.
AC from near Champions' City.
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Valleyboy not sure if it's the same at all hospitals but when my dad had chemo last year he had to have blood tests the day before each session so they could be checked before the chemo was administered.
User
Same for me, bloods (FBC, renal, liver, etc.) the day before, if they don't like the look of the bloods they won't do the chemo. If no bloods are done, no chemo!
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I see my Onco every 6 weeks. She gives me bloods forms for the next 2 chemos and always ticks the PSA box as well as all the others she wants tested.
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Simple matter on the blood tests. I have a stock of forms all of which show the required tests, including PSA, as printed out by the Oncology Nurse at my last three weekly meeting to approve the next cycle. The Chemotherapy Nurse during the infusion puts the relevant figures: Hb, WBC, Plts,. Neuts and PSA into my personal treatment booklet. Perhaps all hospitals don't do this? If not, why not?
AC
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Urea and Electrolytes, Liver Function Tests, Full Blood Count. With PSA, same as mine. AC
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Nice one - tough breed you Valley boys!
E
x
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Sometimes the PSA rises while on chemo and it is not indicative of failure. Sometimes prostate cancer cells produce more PSA as they die off and/or as they try to fight off the attack.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Hi Valleyboy
I've been following your journey so far and want to send my best wishes and hope all goes well. My husband is a bit behind you and your posts have been so helpful to me, he is due to start Chemo in 2 weeks. I am just learning lots from the people who post here and really hope you can get some answers soon. Sorry I can't help but feel for you.
User
Early indication of pneumonia?
Probably not, I'm over sensitive to any signs of pneumonia at present since it has totally f'ed up my summer. My pneumonia was only picked up from an X-ray.
User
Hi Valleyboy,
Once again a reply to your post has been zapped by the system. I have been assured that this does not happen but IT DOES. Either someone is censoring posts or the system has a fault. So this is a repeat entry!
Anyway, to my point, breathlessness is a well known side effect of docetaxel use for both men and women. I had it in the fourth cycle and it is worse in the fifth. No other problems. I checked my peak flow and that is fine too. I shall discuss it with my oncologist next week and hope that in subsequent cycles it does not become disabling. For someone who is as fit as a fiddle, it isn't much fun to be puffing and blowing when returning from buying the paper in the morning, perhaps a mile and a half, 25 mins, down and then uphill. You have my sympathies, but I reckon you may have to grin (or scowl) and bear it like me!
AC
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Originally Posted by: Online Community MemberThanks for the info AC-----
1--Well touch wood" but my breathlessness referred to earlier seems to have cleared itself? As I'm breathing and moving as normal over the last two days, however as stated I've got chemo/5 this Thursday so I ll have to wait and see if this side effect returns?
2--also just read today's news about DNA genetic testing and whole genome testing which can allow specialists to target specific treatments to individuals thus avoiding unnecessary treatments and/or side effects? I'm obviously going to raise this with my treatment team on Thursday, however prior to this has anyone out there had any experience of this issue? Any/all comments regarding this issue most welcome.
Thanks J.
Delighted that your Chemo is finishing and your PSA results are looking good. I suspect that your scan results will be much better than before, hopefully.
I am now over 4 months in to my chemo holiday (post chemo) and enjoying life. I am back at work part time and have had a good summer so far. I meet my Onco again in September, but I pretty much know the next steps as he has already told me as such.
My PSA has already risen to 13.3 so action will be required. I will be having a scan to detect the progress of my Mets, I will be having a further biopsy so that DNA testing can be carried out to determine what future treatments will work. Chemo works very well on me so my Onco is keen for a further 6 rounds of that whilst, as he puts it, I am fit enough to take it, before they give me the softer options in later life. If I am truthful I would prefer ABI if it proves to work with my DNA, but the DNA test will be my journey route in the longer term. They get the results from some lab in Arizona apparently.
Anyway, whatever happens, the journey continues.
All the Best Valleyboy
Dave
"Incurable cancer does not mean it is untreatable and does not mean it is terminal either" |
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Can't help with that, my treatment path differs from yours.
I recall asking my Onco whether Docetaxel can be repeated. She said only if the Docetaxel kept the PSA down for at least 6 months after the initial course of treatment.
There are other chemos, namely Cabazitaxel and Mitoxantrone.
User
I think the standard now is ten cycles of docetaxel or less if the side effects become intolerable. I'm now in a chemo holiday, too.My PSA has stabilized at 1.1 and there is partial evidence that mets have abated. My understanding is that is my current treatment (like yours, zoladex plus prednisolone, though I expect to be swapping the steroid in October) could be followed by rechallenging the PCa with more docetaxel at a later stage and of course the other chemo treatments remain available.
My main reason for stopping the chemo is that it has probably done its job and we are into diminishing returns, plus unwanted side effects. In my case, the increasing breathlessness I reported in cycles 4-6 was unfortunately caused by multiple pulmonary embolisms (lung blood clots) for which I'm now self injecting with Clexane. I shall need six months to get over those anyway, so better not to endanger that recovery with further chemo.
As you can see, my case is a bit unusual, though our treatment is similar and future chemo options remain available.
Good Luck.
AC
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Great news
Best wishes and enjoy your pint
Debby
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Great news, enjoy your Guiness, Ian.
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Good on you! I'll raise a glass to you (any excuse).
R
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"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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What great results. I read an earlier post up I've about people worrying about lower PSA results, it's so individual that what Lyn says it spot on. Some people feel the change health from relatively small rises, but John's has gone 9, 27, 41 in 3 months, and yet he's much the same too. He's having Radium 223 but has not yet had chemo or any of the newer drugs, so we have tools left in the box. I'm not sure when those tools will be applied but I'm guessing when and if John starts to feel bad.
Cheers
Devonmaid
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Great news and long may it continue.
If life gives you lemons , then make lemonade |
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It's great to read some positive news. Lets hope for even better by December.
User
Good news, I’m sure chemo continues to have an affect for some time, so pleased for you.
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Happy to hear so.
Good news are always welcome. Made my evening a bit better 👍.
Xx
Lola
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Great news, as other have said long may that continue. Ian.
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I am pleased to see there is some stability in your results although a slight upward trend in your PSA, although all appears very manageable
Great news
Dave
"Incurable cancer does not mean it is untreatable and does not mean it is terminal either" |
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As you say J a mixed bag , great news on the bloods but the PSA is a bit of a clucker .
My advise for what it’s worth would be relax enjoy the Xmas festivities and get back on the bike in 2018 ready to give it some Wellie .
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
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Hi, I’ve been on PROSTAP since June 2017, had 3 x 12 weekly injections so far. I had some tumour flare for around a week from the first injection. Also had the hot flushes but touch wood These are under control from the acupuncture.
All in all side effects have been manageable so far.
Hope that helps
A
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So sorry to hear this news. I’m watching these posts carefully as it seems likely I’ll finally be diagnosed advanced soon. Very fearful of injections and chemo. You’ve been so brave and upbeat. Hats off to you. Best of luck
If life gives you lemons , then make lemonade |
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Hi Sorry to hear your news;
I have had both Docataxel and Cabazitaxel and i found Cabazitaxel was no where near as harsh as Docataxel
Don't write the golf off just yet.
Anything you want to know just give me a PM
Si
Don't deny the diagnosis; try to defy the verdict |
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Sorry to read this VB.
I hope it isn't as harsh as you think it might be.
We can't control the winds - but we can adjust our sails |
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Valleyboy, I'm a bit ahead of you in the cabi race, but following in Si's footsteps. Just completed my first cycle and found it comparable to my experience with docetaxel. First four or five days some nausea, for which domperidone wasn't a great help, then smooth sailing. Bloods seem to have been unaffected. Hope yours goes well.
AC
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Good to hear from you again Valleyboy and great that you got your golf holiday in.
My PSA also went up after Chemo finished, so I am back on the Docetaxel bus. Cycle no 13 at the last count.
Hoping Cabi works well for you, but still many more treatment options are out there and more coming on line.
All the best
Dave
Edited by member 05 Feb 2018 at 19:30
| Reason: Not specified
"Incurable cancer does not mean it is untreatable and does not mean it is terminal either" |
User
That's a lot of chemo, Dave. I wondered if you had been tested for DNA repair gene mutations? If you have one (about 20% do) you might be eligible for a trial of a PARP inhibitor drug.
Good luck!
User
Thanks for the update ValleyBoy, it's good to hear how you are doing.
Enjoy your walk with the dog and hopefully things will continue to go well for you.
I can't really comment on the spike in PSA but Lyn has mentioned this as often being the case as the cancer cells "fight" the chemo attack.
I'm sure Lyn and others will explain this better1
Best wishes,
Ian
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Valleyboy, my experience (now in fourth cycle) is that PSA changes are much less dramatic than with docetaxel and start on the downward trend from your current cycle. I certainly hope that is true! You will need some big changes, though.
I hope you get them!
AC
User
Ok back from 3rd infusion of 2nd line Cabazitaxel chemo. All ok at mo. PSA down 130 points from 3 weeks ago, so still high but at least it’s now heading in the right direction?? Let’s hope for similar results again in 3 weeks?
Beautiful day so just walked the dog for 1 1/2 hours, had some tea and now gonna have 40 winks. “ night night John boy”!!😀
User
Great to hear you’re still playing golf, are free from pain and enjoying golf and footie.
Hope things continue to go well with the cabazitaxel.
I can’t answer your question about your alkaline phosphate but I’m sure someone who knows more than me will come along.
It’s a nice sunny morning where I am, hope it is where you are too, enjoy the golf.
Ian
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User
Good luck Valley boy wish you well with your treatment.
John.
User
Well it certainly suggests that there is less bone activity than before. Enjoy the golf :-)
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Quick update—Bloods all ok for chemo (Cabazitaxel) 5 of 6 tmos, but PSA up again 46 pts to 626. So as I’m coping well with chemo I’m going to ask my oncology specialist if it’s worth considering upping my current chemo infusions from 6 to 10 cycles in an effort to stem the tide?? However alkaline phosphate still continuing to drop by a further 20 pts to 181 so at least something is going in the right direction and it’s down almost 100 pts over the last 3 months? As stated previously no pain or general health issues at the moment in fact as usual I played in our 18 hole Golf comp this morning and had a half decent score! And have taken the dog for a walk this afternoon?. Anyway unless anything untoward happens tmos I ll update you all in approx 3 weeks.
Ps went to a local PSA meeting last week where one of the speakers was Professor Robert J Thomas (Bedford and Addenbrooke hospitals, Coventry and Cambridge University lecturer) who spoke to us on “Lifestyle, nutrition and Cancer” in what was a very informative speech so much so that I even bought his book!! Keep the Faith. J.
User
I hope your PSA continues to fall.
Lucky you didn't get drugs tested after the golf.
At my course there would be cries of "bandit"!
Ian
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User
Ok, just back from a meeting with my onco and as my scans indicate no additional activity in my bones, (ie. a stable reading), then she’s pushing me on for a further 4 Cabazitaxel infusions (taking it up to 10 sessions). In an effort to bring my PSA down a bit more, currently 552.
It then looks as if I ll be going to Bristol once a month for 6 sessions of Radium 223. Which again targets bone activity, and when you consider that todate I’ve had all my current treatments within 6 miles of home ain’t too bad is it?
So if anyone out there has experience of Radium 223 treatment I love to hear your comments on same.
Ps
As I’ll need to go over the “Bridge” to get to Bristol do I need to take a tank filled with Welsh air with me!,! 😂😜
User
Thank you for the update Valleyboy - I always read your posts with interest and wish you the very best with your ongoing treatment.
User
Always good to follow your progress Valleyboy, and good to see you are still relatively healthly which is great news.
I think I picked up a query on another thread which you raised as to further treatments.
I am no expert by any means and I'm sure Lyn or some of the other posters would know more about it than me, but my Onco has repeated that the following treatments still remain on the tablle. So in no partucular order they are:
Cabazitaxel
Mitoxantrone
Zytiga / Abiraterone
Enzalutamide / Xtandi
Immunotherapy drugs
My very best wishes to you Valleyboy
Regards
Dave
"Incurable cancer does not mean it is untreatable and does not mean it is terminal either" |
User
Just back from check- up at Marsden for trial that I am on. Good chat with doc. It’s inspiring what they have coming in terms of new treatment approaches. Definitely keep the faith!
User
Glad to see you are moving on to your next treatment plan and you remain active and in relatively good health.
I certainly couldn't be as active as you in this heat. That is for sure.
I look forward to following you on your latest journey
Regards
Dave
"Incurable cancer does not mean it is untreatable and does not mean it is terminal either" |
User
I've been looking for ages for someone to trim my bushes :-/
Sorry to see that your PSA has remained high but some on here have had great results with Radium 223 and less travel will be a blessing. Fingers crossed for you.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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You can find it under Treatment/advanced and metastatic, Good luck with everything!
User
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Siwmae Valleyboy and good luck with this treatment. Not had it myself (yet) but all the medics I have spoken to are enthusiastic about it.
User
You sound quite positive Valleyboy. Keep golfing. I am too!
wishing you all the best.
Ian
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Keep up the good fight Valleyboy they seem to be giving you some good treatment sound good apart from the traveling must be very tiring for you with all that treatment.
Good luck for the future.
John.
User
Ok for those tracking my progress I’ve just completed day 2 after my first Radium 223 treatment and to date I feel fine with no undue side effects.
Played golf this morning, then went to watch the “Swans” beat Preston. Then popped in the local Rugby club on my way home for a few “Becks Blue” and a salad roll, and yes I am the only one down there drinking it!!😜
Bit tired now so having and early night, but as we ve been awake since about 5 am with the puppy it’s not really that early is it!?😂🐶
Keep the Faith
J.
User
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Body of a god—-pity its Buddha!?!😂
User
The all phos result might just be a transient flare related to the treatment. Stay with it!
User
Hi valleyboy
I haven't posted for ages and decided to have a wee look at some posts. I have read your story with interest as it may be the route that I may be going too.
I've had PR, RT, Chemo and 3 monthly Zoladex implant. I know that in the not too distant future I too will need further treatment as I now have bone Mets, diagnosed last Jan hence the chemo.
Have my next appointment in 2 weeks time with consultant to map out the future. So really interested in your posts.
I'm 58 and just took up golf and loving it, should have done it years ago. Anyway stay strong.
Onwards and upwards.
Sandy
User
Sandy
Glad my posts may have been of some use to you and that whatever treatment plan you follow works out well for you.
And yes I still find that even 18 months after a rather sobering initial diagnosis I mostly continue to enjoy every day with just fatique as my worst enemy.
Re- golf go for it—as after my initial diagnosis I couldn’t play for 6–9 months and really missed it. However during one of my specialist oncology consultations at the start of this year she said, “listen to your body”, and if you feel ok play, if not give it a miss, so that’s what I now do and usually mange to play twice a week without any problems.
Other than that I’m still gardening, cutting grass and walking the dog on a regular basis, and although whilst I still maintain a dietary plan, ( ie no processed food, red meat and limited dairy products, plus no alcohol), it’s not as rigid as at first, which has resulted in some, (most) of my initial 1 1/2 stone weight loss being put back on!! However I’m still feeling fine and as most of my treatment infusions are weight based they just have to give me a bit more product to compensate!!😂
Take care.
Keep the Faith (Northern Soul Rules).
J.
User
Hi Valleyboy
I just took golf up about 3 months ago so still a beginner, never hit a ball in my life. Just thought that I needed something for when I retire in a couple of years. Although I have been told that my life has been shortened dramatically by the mets I try and put that to the back of my mind and have continued working. Hopefully golf will go a long way in helping with retirement.
Glad you are taking life on in as best a way that you can.
By the way heavy metal rules 🤣
Cheers
Sandy
User
Hi J
Good to know that there are no side effects and hopefully that will remain the same in any future sessions.
I've had a few days break down in Cornwall this week before my latest set of blood tests on Monday. Trying to remain upbeat about the results. Have an appointment with the oncologist next Friday.
Hope to get a couple of rounds of golf in before I return to work on the 17th.
Take care.
Sandy
User
Just had full Bloods in Glangwili and a video meeting with the Ra223 staff in Bristol and all good to go for infusion 3 next Friday (5th).
PSA down another 16 points to 403 and ALP down 47 pts to 133 so all good there to.
Also played golf today and cut the grass and Feeling fine at the moment??
No treatment side effects to report on so unless anything else happens I ll update you all after my 3rd Ra223 injection next week.
Ps
When speaking with my onco yesterday, I asked her what were her views on 225-Ac-PSMA-617 treatment, which has recently been reported on as having superb success on PSA No’s and mets in Advanced PCa cases in Germany and South Africa? And much to my surprise, as/when applicable she’s already got that lined up for me. Starting with a Ga-PSMA-PET/CT scan in London, to see if I’m suitable for this treatment. followed by a possible trip to Germany?? However my son lives in Australia and I think they also do it there too, so who knows??
Keep the Faith
J.
User
Sounds like you have an oncologist who’s really on the ball. I’ll be very interested to hear how you get on with the PSMA scan/treatment in due course. Meanwhile all the best!
User
Hi Valleyboy
Is the Actinium 225 treatment being funded by the NHS or is it Privately funded. The latest reports look promising.
All the best
Roy
User
If it’s applicable to a particular patient, that is if the scan shows that the tumour cells are expressing the PSMA molecule (as most do) then the treatment should work on mets that are in the bones or anywhere else. That’s the beauty of it.
User
Bloods update——although my current treatment plan is not supposed to affect PSA levels, following this test my PSA is down a further 35pts to 367. Whilst my alkaline phosphate (bone marker) is down 21 to 112 which is back within the normal range for the first time in 20 months.
Some of my red blood cell markers are a bit high but I ll clarify what that means in my video conference meeting with the oncology stafff in Bristol on Monday. Still feeling fine, So if all’s well it’s off the Bristol on the 2nd November for my 4th Radium 223 infusion. Further updates to follow in November.
Keep the Faith
J.
User
Good results! Very glad for you.
User
Ystrad Mynach? That’s almost the flat part of the valley isn’t it? 😂And as it’s now known “satellite city” for Kerrdiff!!
You have got the spirit just gotta release it. Loads of treatment options out there with more coming on line all the time.
As/when/if required, I’m even considering treatments in Australialia, South Africa or Germany?
Keep the Faith
J.
User
Thanks for the support yes YM is the flat bit
onward and upwards!!
User
User
Glad to hear the Radium 223 treatment has gone smoothly and you are coping well with it.
Ian
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User
Great to hear that you are making good progress Valleyboy.
Best wishes
Dave
"Incurable cancer does not mean it is untreatable and does not mean it is terminal either" |
User
The bear—don’t panic we do like you😂 it’s just that you need to post online for a while before they give you access to personal messaging. (Not sure of timescales).
All the best.
User
Hi J
It will be good for you to get a wee break.
I'm every 3 months now myself, next meeting with oncologist in Jan. But it's a good feeling knowing no more hospitals for a while.
Have a great Xmas and all the best for the new year.
Onwards and upwards.
Sandy
User
Good news valleyboy best wishes to you and your family i’m starting aberiterone this week hoping for the best.
Have a good christmas to everyone
R
User
Hi Valleyboy ,
I have read your first post and whilst my diagnosis was not as severe as yours , I had PSA of 19 odd with Gleason 6 + 7 , Tumour the size of the gland mid 2014. Mine continued to spread outside . Went to lymph nodes in groin , chest and now travelled to my spine . PSA now 500 . So far I refused Chemo . Not keen on the stuff . still debating it . I came across a guy called Chris Woollams and canceractive.com . I read his book , How to Beat Cancer . The guy got a degree in Biochemistry at Oxford Uni and specialised in Cancer. His Daughter got Brain Cancer and that's why he set the site up etc . I am still building my own treatment plan from reading his book and using the site . At the moment I do the following
: Take Vitabiotics Vit D every day , Vitabiotics Immunace Mon / Wed / Fri , Cannabis Oil twice daily , Apricot Kernals ( 8 ) morning , every meal and evening and Biobran 1 sachet of an evening with my herbal sleep stuff
I take Ayurvedic medicine for Hot Flushes as well as Vitabiotics Menopace Plus
Only Oncologist medication is Bicultamide 150mg daily ... I stopped taking Zoladex and reverted back to Bicul. after horrendous problems with Insomnia on Zoladex . I am also in discussion with my oncologist regards Chemo options after Cancer went to my spine in Jan 2017 and PSA rose to 500 summer 2018 . At the moment plan is to monitor PSA and continue what I'm doing . Chris Woollams is an amazing guy . Also I have found from researching about Gut Health ( thanks to Chris ) another amazing bloke ... Dr Stephen Gundry MD and the Plant Paradox .... I am building on this knowledge , trying to build more knowledge about NK Killer cells too . I hope this helps you and very best wishes with your journey . I don't get much time but I'm hoping to look through the site to get some information to help me , especially from fellow lads having a tough time of it all . Good luck mate
Bill&Ben67
User
Ok, just back from Bristol following my last Radium 223/6 infusion. So that’s this course of treatment finished for now. Therefore other than full bloods during 2nd week of Feb. Followed by a scan sometime in late March, its a treatment holiday for me. 😂 As outlined earlier thats also the end of basic conventional treatments for me with immunology/trials/new innovations now on the horizon. Obviously I ll keep you all informed as to the “way ahead” as/when I know it. I ll also update after bloods in Feb. So until then Happy New Year to all.
Keep the Faith
J.
User
Happy New Year to you too.
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User
All sounds good enjoy the holiday and a happy new year R
User
Hi Valley boy,
Wishing you all the best in your treatment I am sorry if it goes over my head a bit as i don't understand the amazing treatments and cross treatments they do for you and others, good luck.
John.
User
Hope your ok now I had a urine infection after biopsy led to a trip to A&E by ambulance after I had passed out due to low blood pressure antibiotics for a week then ok hope this helps R
User
As someone prone to low blood pressure, best way is to make sure you are drinking plenty of water. Sipping rather than gulping throughout the day will keep you hydrated and return your blood pressure to near normal. It is very easy to not realise you have not been drinking enough.
Best regards
User
I don’t know the answer Vallyboy, but I’d be calling the doctor if I were you just to make sure. Three days is far too long.
love Devonmaid xxx
User
Good luck on Monday. This awful illness does its utmost to beat us, but your OK feelings hopefully give you optimism to kick it into touch as well.
User
Hi,
No, I do not think you are imagining significant pain reduction with Enzalutimide. I had a lot of hip pain wihich disappeared almost immediately after starting this drug. Also initially, it reduced my PSA down to single figures (happy days!). Although it was about 8 months before the treatment was stopped after becoming ineffective, some people on here have had many years on it.
Here's hoping you can be another one!
Best regards
User
promising news, I must admit that Enzo seems to have had an impact on John's hip pain too though he remains on patches as we dare not try without. So far so good!
Love Devonmaid
Edited by moderator 20 Feb 2019 at 18:18
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User
Great to hear you have lost severe aches and can golf etc.
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User
Great news although the appeal of golf passes me by, I'm afraid
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Just seen the Onco and all good. Enzo has reduced my PSA by 36% to 600 in 3 weeks and whilst my ALP has increased this is a known (bounce) factor often seen during early treatment.
Just collected my 2nd months supply of Enzo with my next Onco appointment booked for the 8th April. And if my PSA is still reducing at that time, then this will be the way ahead for the foreseeable future.
Last weeks CT scan has shown that the nodules on my lungs ( which have been there since my 1st scan in Feb/17), are still an area of concern, but as of now no other treatment required.
Also bone scan planned for later this week now postponed till later in the year just to give Enzo it’s head.
Overall the difference in my well being over the past month is remarkable. In that I haven’t had to use any pain killers, whilst I was living on them for the previous 3 weeks, and whilst I’m still a bit stiff after playing golf, I put some of this down to arthritis which is clearly visible in my hands, so must be present elsewhere too.
Anyway let’s hope Enzo continues to do its work, thus delaying any further chemo and/or trials for a later date.
Keep the Faith
J.
User
Really good news about the PSA reduction and the improvement in your general health, John has felt much better on Enza too, not enough to get out and about much and no idea about PSA yet as we havent see blood results due to late bloods last time and onco cancellation this time. Should know next week, but clearly things have got better so expecting things to have improved. We have noticed that John is suffering from oedema again (abdominal lymph nodes to blame) and he is on fentanyl patches 25mls, so pain is mostly ok. Fingers crossed.
Lots of love
Devonmaid xxx
User
As you say, a real mixed bag. What does come through very strongly from your well-chosen words though is your wonderful strength of character. Long may it continue ...
User
Your some cookie valley boy what spirit I’ve been on abirateron for 4 months with steroid initial PSA was 11.8 then after prostrap went down to 3.2 after one month on abiraterone PSA went down to 0.6 prostrap injection changed to the 12 week jab after a further 2 months PSA risen to 5.2 one month later risen to 8.2 next prostrap injection tomorrow best get that double checked oh well onward and upward R
User
A very mixed bag Valleyboy. Hope blood transfusion gives you a boost.
Ian
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Keep the faith Valleyboy.
It is always good to see your positivity shining through
Dave
"Incurable cancer does not mean it is untreatable and does not mean it is terminal either" |
User
Hi Valley boy.
Been a wee while since i replied to you.
I too have my blood results back prior to oncologist meeting tomorrow and unfortunately my psa has started to rise. Nowhere near yours but I'm totally devastated.
Keep fighting mate.
Sandy
User
Hi Valley Boy
you’ve not had much luck lately hope things improve for you soon my PSA is slowly rising still on abi hope it’s going down after bloods next week feel fine at the moment.
Keep on plugging away J it’s the only way.
Best Wishes
R
User
Ok. Had scheduled Meeting with Onco today and as expected 2 months on Abi has failed to make an impression on my PSA so it s back on Chemo(doxetaxel) from next Monday.
During these infusions I ll also be getting a biosophanate infusion to strengthen my bones.
Not sure how many infusions I ll get in this treatment cycle as it all depends on how well I tolerate the chemo this time round. As although I sailed through my previous 13 chemo infusions as I’m now rechallenging “it” after quite a break, we ll just have to see how it goes.
As usual I ll keep you all updated as appropriate.
Keep the Faith.
J.
User
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
My very best wishes Valleyboy.
Regards
Dave
"Incurable cancer does not mean it is untreatable and does not mean it is terminal either" |
User
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User
Ok. Pen y Fan mountain walk/ride completed yesterday. With the 886 metres taking 4 hours up and down. Over £2500 raised to date with the “Just Giving” page open till end of July. Couldn’t have done it without an amazing team of helpers as by the finish not only had we negotiated the mountain but 216 ditches too!
On the medical front had my bloods done on Thursday, with Chemo No 16 planned for Monday, and they indicate that my PSA is down 300. 😜 With my ALP levelling off too. Other bloods eg. Red and white cell counts also moving slowly but in the right direction. So hopefully once more Chemo is doing its job for me?
Anyway putting my feet up for the rest of the day, oh look there’s golf on the TV all day too!!😂
All the best
Keep the Faith
J.
User
What a fantastic achievement- well done!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Brilliant on both counts. Hope you feel on top of the world. Nothing like a mountain walk to make you feel great afterwards.
Best Wishes
Ann
User
Well done hope you had a good view from the top
R
User
Hope all goes well. Brilliant amount raised, well done on that.
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Good result with the Pen y Fan climb well done. Keep the faith with the treatment sorry to hear about the Onco best to have some continuity if possible as you say hope the replacement is good.
R
User
Traditional quality British sausages are classed as lean meat rather than the processed continental and American kinds - check the ingredients if in doubt
Edited by member 12 Aug 2019 at 17:26
| Reason: Not specified
User
Hope the treatment goes well and you stay well it was interesting to read the info about the nutrition it may well come in useful. After meeting with the Onco yesterday I’m staying on the Abiraterone for now and a CT scan is planned on the result of that will decide the way forward.
keep the faith
R
User
Hi Valley Boy
As you say fantastic service from the NHS they do pull out all the stops when needed the eye problem is a bloody nuisance I hope they can sort that for you.
Keep the Faith
R
User
Great to see your positivity shining through Valleyboy.
Keep going
Regards
Dave
"Incurable cancer does not mean it is untreatable and does not mean it is terminal either" |
User
Sorry to hear this Valley Boy, I didn’t know this could happen and am glad that the NHS is doing the right things. Fingers crossed.
lobe Devonmaid xxx
User
Fingers crossed valleyboy
User
If life gives you lemons , then make lemonade |
User
Good luck Valley Boy I’ve been looking at this myself today funnily enough.
Best wishes
R
User
Finger crossed for you that you have the PSMA receptors. It may be worth asking about Actinium 225 if there is bone involvement or a mixture of both. Keep us informed.
All the best
Roy
User
Fingers crossed for you Valleyboy.
I have been given the ok now for Lutetium 177 as my PSMA Pet scans light me up like a Christmas tree and my bloods are good, particularly in regards to kidney function
Just waiting for a start date now.
Who knows, our paths may cross.
Regards
Dave
Edited by member 12 Sep 2019 at 22:29
| Reason: Spelling error
"Incurable cancer does not mean it is untreatable and does not mean it is terminal either" |
User
Eating meat, and taking serious exercise push up your creatinine levels. I avoid doing both before a kidney function blood test. I saw an NHS recommendation somewhere to not eat more than 100g of meat in the 24h before a kidney function test.
User
Hi J, are you taking regular ibuprofen for anything? That can push up the creatinine as well
User
Hi Valley Boy another knock back it’s a nuisance I’m positive you will get over this and press on with the treatment.
Keep the faith
R
User
Hi Valley Boy
Good news your moving forward again
Best of luck
Keep the faith
R
User
Good luck Valleyboy.
I have already started my Lutetium 177 treatment.
I am now 10 days on from my first infusion and all is good so far.
All best wishes to you
Regards
Dave
"Incurable cancer does not mean it is untreatable and does not mean it is terminal either" |
User
All. Just a quick update. Well I’m finally off to Windsor for Lutetium 177 treatment tmos. (Thursday 10/10). Car picking me up at 11am, then we ll take it from there. Not feeling particularly good over the past few days as I’ve had some pains in my chest and shoulders. However I’m still looking forward to the treatment as I do feel that’s its now or never for me, and hopefully this treatment will give me the overall health pick up I need at this moment in time.
Obviously I’ve spoken with the consultants in Windsor who have explained that whilst Lutetium has had some spectacular results, it also doesn’t work for everybody, so let’s just hope I’m one of the lucky ones?
Anyway, all being well I ll update you all on Friday.
Keep the Faith
J.
User
Good Luck, I hope it all goes well for you.
User
User
All the best Valleyboy. Hope the treatment works in your case.
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VB
All the best, hope it is a success.
Thanks Chris
User
Hi Valley Boy
Good news your on your way at last the very best wishes from another valley boy fingers crossed all will be well with you
Keep the Faith
R
User
All the best Valley boy, here's hoping it goes well.
Sandy
User
Good to hear you have finally started the treatment and that the pain you were having has deminished. I contacted Bristol today to see if they are still recruiting, but they have now filled all available places so that's no longer an option for me. Fingers crossed for you that it gives the cancer a good kicking.
All the best
Roy
User
Ok. Quick update day 5 after 1st Lutetium 177 infusion.
After first day when everything seemed to calm down there’s been a bit of a change—since then Heavy cold sweats at least 4 times a night, necessitating complete change of bed and sleeping clothes. Also bit of a dry mouth but nothing that can’t be controlled by a drink or a boiled sweet.
Some pain in lower back area, but then again as my regime at the moment is mainly bed, sit down in chair, bed, that’s hardly surprising. Hoping to get back to a bit more exercise next week but very lethargic at mo.
Still staying at least a metre away from missus and dog as advised for 7 days. Then at least able to sit in same room for limited time during week two. Weeks 3-6 should be back to normal but we ll just wait and see.
Full Bloods to be taken after 2 then 4 weeks to check on kidney plus bone marrow impact to see if ok to go back for infusion 2 in about 6 weeks. But still awaiting full details of same from Windsor.
All in all whilst I’ve got something to do, eg watching rugby and footie all over weekend, it’s not to bad, and whilst I will no doubt watch a bit a day-time tv later, I hoping to get stuck into my new Sam Warburton book today for a bit of escapism?,
So unless anything untoward crops ups I ll update you all again as applicable.
Keep the Faith
J.
User
You are going through the mill again stick with it let’s all hope you make good progress hey Wales are through to the quarter finals something to look forward to on the weekend.
keep the faith
very best wishes
R
User
Valleyboy,
1st 2 weeks are the worst when the radioactive substance in your body is doing what it says on the tin.
Week 3 should be fine if my experience is anything to go by.
Regards
Dave
"Incurable cancer does not mean it is untreatable and does not mean it is terminal either" |
User
I hope it all settles down soon, VB
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Hoping things improve ValleyBoy, keep on posting and living your life xx
Show Most Thanked Posts
User
Hello Valleboy and welcome to the forum although sorry you find yourselfhere. I'm afraid I don't have the experience to help you here but some others with similar stories will no doubt post soon. ColU_FC in particular has written some very informative posts about Chemo and Irun about the ultra marathons he still manages despite his diagnosis. If you click on the members tab you can search for them and take a read of their bio's and posts which may help.
All the best
Julie
User
Hi Valleyboy
Don't know if it's the Welsh valleys but, if so, a special welcome to another Taff. It is rough that you find yourself here but the forum is a brilliant source of advice and humour (often of the dubious variety) and knowledge so you are absolutely in the right place.
My OH is 65 with advanced PCa and multiple mets plus a history of depression and anxiety which doesn't help. He's been helped enormously by a very active hospice care team who, once he let them through the door (took a lot of persuasion) have been absolutely fantastic in helping him deal with both the physical and psychological aspects of the diagnosis and the disease. Don't know what we'd have done without them. So if you aren't already linked up to a palliative care nurse/doctor, please do ask your GP or consultant for an immediate referral - and then take advantage of all they have to offer. The brilliant thing about them is that they respond to you as a person rather than as a patient. So my OH likes going to the pub for a pint, and he likes cycling. Rather than telling him to stop either of those options (both very very important for his general well-being) they've encouraged both - within reason of course - and are constantly adapting the various tablets he's on in order to help him live as normal a life as possible. Plus it's fantastic to know that they are there and ready to leap in day or night if we need them, as we often do.
In terms of treatments, the Toolkit that you can download or send for from this site is very helpful but it's also useful to ask members about their experiences direct. As Julie has said, CoIU_FC's chemo blog is really helpful plus you will find other men with very high PSA results who are still going strong - Sallyyy's husband is just a few months ahead of you and has just finished chemo which has brought his PSA tumbling down for example.
Although the awfulness of the diagnosis never goes away, things will get calmer I promise you. Particularly once the chemo is underway and having an impact on the cancer. At the start things just feel out of control but it does improve. Especially, in our view, with the odd pint!
Pob lwc. Take care.
Eleanor
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Hi Valleyboy,
I can't give any advice re chemo as we haven't been on that treatment but we have just about had everything else. At the moment on Abbiraterone/ Raduim 223/ and Zolodex .
Those first agonising weeks and months after diagnosis are still so fresh in my mind but they do get better and especially after you hear of stories a bit like our own Trevor was diagnosed 4 years in May with Ext bone mets and a PSA of 13000 . He is still here a bit wobbly around the edges but still driving / walking even helping doing gardening last weekend and that is nearly 4 years after being diagnosed.
Hope this helps.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
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hi Valley boy baldyman here,
i have had 3 chemo sessions with a fourth next week, for me i have had no sickness and feel ok, last week however i picked up a viral infection that has been treated with anti biotics.
I cannot say that everyone feels ok but there is plenty of support out there, there will be good and bad days but chin up mate, my psa was 242 its down to 19 !!! and i am a T4
take chemo as you find it mate its not as bad as it used to be
take care
Baldyman
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Thanks for replies above--just been confirmed that I now attend my local hospital on Monday, 10th April, for pre-assessment visit and "bloods", with chemo (6 cycles every 3 weeks), then scheduled to start on Tuesday. I have also been informed that I will continue with my current hormone treatment' (Dergarelix), during these cycles. As with others before me on this forum I'm hoping to post regular updates as to my progress, ----1) to help other 'newbies' who are also just embarking on this road, and 2) to help me remember how I feel/felt during each 3 week cycle---still can't believe this is happening to me, as up until the end of January apart from a few aches and pains which unfortunately I put down to the aging process, coupled with golf 2/3 times a week, and cutting over an acre of grass without a ride-on mower, I feel fine??? However here goes and I start with some words from my favourite film "The Gladiator" ------"on my command unleash hell"!!!!!!!!!!!
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I hope the chemo does it's job and that you have minimal side effects. I am 7 treatments in of 20 on salvage radiotherapy.
The people on this forum are invaluable to each other as a source of support, inspiration and knowledge. The replies I had about salvage radiotherapy were really welcome and useful to me.
Like you I am visualising in this case the radiation unleashing all sorts on my tumours, take that you ...........!
Best wishes, Ido4
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Not sure about the "on my command" bit but on here, any mention of ride on mowers can unleash a kind of hell :-) Good luck to you over the next few weeks and months
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Good luck with the chemo, my OH had 6 session this time last year and had very few side effects .he still worked everyday just at a slower pace .Nearly 1 year on his PSA is 0.01 undetectable.I hope your as lucky
Best wishes
Debby
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Ok here goes--see original post to see where I'm coming from----just had 1st chemo (Docetaxel) session today (10.30-15.00), consisting of saline drip/steroid drip then chemo infusion.
Also been given steroid tabs to take for next 3 weeks till next chemo cycle.
I realise it's still early in the treatment plan but At the moment I feel fine, been out for a shortvwalk, with no sickness, appetite or taste loss. Also told to carry on with current tablet regime and add others given today at prescribed times, that means I'm now on 12 tabs a day!!! All being well i ll update you all tmos
Cymru am byth Eleanor!!--(Valleys Wenglish)!!!!
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Fingers crossed that all goes smoothly for you. Good to have another (potential) Welsh rugby supporter on the site... lots of otherwise lovely folk here who prefer to cheer for the English team. How weird is that!
Take care.
Eleanor
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Too weird for me!!! but my partners From the other side of Offas Dyke so I can't say too much can I???? Dw'in dod o cwm Rhymni yn wrieddiol (more Wenglish), now living in Carmarthenshire😜
Day 2 morning update --woke up with a bit of a sore throat but other than that all ok--full update this evening
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Another Valley boy here butty.
Born in Llwynipia hospital . Lived at Clydach Vale (Tonypandy) till we moved to England
All the best to you.
Ray and family.
Edited by member 12 Apr 2017 at 16:53
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Valleyboy, I've just had my second infusion and there were no side effects worth a mention over the three weeks. First week if pushed, I would confess to a bit lacking in energy and a bit headachy behind the eyes, but trivial, really. Second and third weeks, completely back to normal. My blood results were normal and my PSA was knocked back markedly. So I'm a happy Easter bunny! Hope it goes as well for you, too.
AC
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Thanks for the replies I find they really help----
Day 2 (of chemo/1) update---no issues at all---food still tasting fine, 30 mins on spinning bike this morning, whilst this afternoon I changed the fuel pipe and plug on the mower, drained out the old fuel and cut the lawn!!!! I know I know, take it easy, but at the moment the steroids seem to be giving me so much energy I may even go back out later and cut the other lawn in the dark!!!!! Well maybe not, as I've now settled down to watch the footie with a nice bottle of no-alcohol Stowford Press!!!!! Not quite like the real thing but I've made a conscious decision not to drink until I finish the chemo cycles so I'm going to stick to it, the boys down the rugby and golf clubs can't believe it!! Anyway onward and upwards and let's see what tomorrow brings.
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Hi valleyboy,
Looking at your posts you seem to be on top of things and keeping positive- the way to go! You'll see from my profile I've T3cm1no with some mets in bones, god almost 2 years ago! Time flys when your having fun or chemo at least! I got through it pretty well with changing wee bit of diet, exercise and work, but kept a bit of wine and IPA (brains SA) for you. As everyone says watch out for the last couple of sessions because tiredness really can come on then. After that it takes time for your body you recover. Listen to it.
Hope it all goes well for you and keep positive! You need the six nations for next year!
Steven
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Day 3 (chemo/1) update--still all ok ----but wide awake at 1am last night, (steroids)? And up twice in the night for ablutions!! So bit tired today but still managed to walk around the golf course supporting the boys in their 1st match of the season. Due to bone mets ive Been advised not to play golf till I finish chemo, but then again it's a small price to pay if the chemo works and Gets me back on the straight and narrow, even if it is for an unknown time? Read about the "add asprin" trial today which suggests that taking 75mg of aspirin daily may prevent bone metatarsis progressing? Obviously as I'm so early into my treatment I wouldn't take anything without running it past my Onco, but I've been informed she's gone away for easter??? Has anyone else heard anything about this aspirin development?
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Day 4 (chemo/1) done and dusted--no issues, also no unacceptable bone pain today so first day since Feb that I haven't had to take additional pain killers? --been taking them every 6 hours to date but not required today--chemo and/or steroids must be kicking in and providing pain relief? Now let's see what tmos brings?
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Day 5 (chemo/1)--what a difference a day makes??--got up felt ok--had brekkie etc ---went for a walk about mid-day came back and whoosh the fatigue hit me--had to lay down on couch and didn't feel up to much till about 5pm ---also back on pain tabs as when I woke up my shoulders were sore-- didn't fancy any food so had a complan" but managed some fish for dinner so let's hope tmos is a better day? Ps "the Swans" lost again what a day!!!!
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Days 6/7--(chemo/1) update---all ok over last two days, out walking both days and cut the lawn this afternoon. Glad to be back to "normal" as I've got Blood test tmos for next hormone injection on Thursday.
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Valleyboy your doing great ,the first month is always differcult as your not sure of how your body's going to react .When Gary had his a year ago for the first 3 sessions on days 3/4 he had very painful thigh spasms and also it's as if all the old injurys that had happened over his life were being targeted ,eg : ribs ,broken thumb ,and even inside his ear where molten metal went in while soldering ! It did get easeier over time .also Gary used a mouth wash twice a day prescribed by hospital .
Gary found by still working helped keep him going but fatigue was the main side effect .
Best wishes
Debby
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Days8/9 (chemo/1)---still all ok with pain tablets down to "as required" instead of every 6 hours--therefore only needed 2 yesterday, whilst so far none today. 3rd hormone injection today and prior to receiving it Tuesdays blood tests indicated all ok for injection--however there was also a 'small win' in that for the past two years I've been pre-diabetic (47), which then rose to 49 (diabetic), at the same time my elevated PSA was diagnosed, (Feb/17). Today my blood sugar reading was 40!! So no diabetes treatment now required as readings are well under the proscribed level. Please note I think this must be down to my dramatic diet change over the past 3 months, i.e. No processed foods, plenty of fruit and veg, no red meat and soya substitutes instead of most dairy, plus no alcohol??? This combined with daily exercise, either walking and/or stationary spinning bike, has resulted in a weight loss of 2 1/2 stone, which, as stated previously was needed!! So all in all a good day, let's hope it lasts?
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You'll get the slimmer of the month prize if you keep this up! Really impressive - well done you. I on the other hand have taken to comfort eating, comfort drinking and comfort sitting on the sofa.
E
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Day 10/11/12 (chemo/1)----all still ok, no significant issues, so chemo/1 seems to be going ok, few sniffles and sneezes this morning but no other flu/cold symptoms, don't know wether I'm being a bit optimistic but as I've been advised not to play golf till chemo finishes, I've gone out and bought a motorhome??? Pick it up in 2/3 weeks then it's off for a life on the open road?? Well initially West Wales anyway!!!
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Hi Valley Boy,
I see you are planning to travel in W Wales in your camper, is that where you live. have you come across WW Prostate Cancer Support Group. they have a web site. We live in W.W.and we go to the group lunches and meetings, if you are a member see you there if not you would be very welcome.
Leila
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Days 13/14/15 (chemo/1) all still ok, walking, cycling as normal--minor aches and pains but nothing of concern--in fact no pain tabs needed for past 3 days? Hopefully Chemo, hormones and steroids doing their job there--just cut grass again with no ill effects, so with only another week to go till I start chemo/2, it looks as if I'm coping ok, (let's hope that statement doesn't come back to haunt me)?? I feel my Diet changes and exercise definetly helping as I'm now 2 1/2 stone lighter than I was in January, and feel much better for it!!!! Anyway just off out to re stock on more green veg, salad, whole grain brown bread etc etc. Just read Jane Plants diet book, bit severe, but there's a few things in there that I'm also going to take on board.
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Ok--days 16-21 (chemo/1) all ok- no undue side effects, so it looks as if I've got through chemo/1 unscathed?? even my beard which I shaved off 3 weeks ago has grown back!!
Start chemo/2 tmos and whilst I'm still going to maintain this blog for reference purposes, unless any side effects kick in, which I will comment on immediately, it will now be on a weekly/as required basis. Hope everyone out there is battling on, stay strong, the summers on its way which for us in Wales usually means one day of glorious sunshine sometime between June and August, interspersed with the occasional shower!!!!!!! Then again thankfully I do live on the right side of Offas Dyke so I can't complain can I?? Take care---J.
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Good on you Valleyboy! Hope the next session goes as smoothly and that your beard grows ever fluffier. My brother ended up with curly hair when his grew back so you never know...
E
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Glad for you, Valleboy.
Wishing you continue to carry on well with your chemo... And your beard to grow back splendid.
All the best for you,
Lola.
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Valleyboy, I've just had my third infusion and a further good reduction in PSA, so a very happy bunny. The pattern with me is now - first week headaches and slightly nauseous but not disabling in any way; second week much improved energy level and side effects after 7-9 days; third week back to normal.
My wife says my chest and back are as smooth as a baby's bum, but beard and hair on top of head, such as there is, entirely unaffected. I guess we are all affected differently.
Hope your treatment continues as smoothly as mine.
AC from near Champions' City.
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AC--how are you getting your PSA readings after each cycle? Because I've been told I need to complete at least 3 or 4 cycles before I get any further blood tests or scans to see how well, (or not) the chemo and hormones are working. thanks--
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Valleyboy not sure if it's the same at all hospitals but when my dad had chemo last year he had to have blood tests the day before each session so they could be checked before the chemo was administered.
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Same for me, bloods (FBC, renal, liver, etc.) the day before, if they don't like the look of the bloods they won't do the chemo. If no bloods are done, no chemo!
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Thanks for the replies and yes I do have my bloods taken 2 days before my chemo session and then a nurse phones up, e.g. today, ( one day before chemo) to tell me the results are all ok and that my chemo will go ahead as planned tmos. However on both occasions so far there's been no mention of How my PSA is doing and when I queried it 3 weeks ago I was told I wouldn't
Get any PSA indications until after sessions 3 or 4 at the earliest, and I was just wondering how "AC" seems to be getting his PSA results with every cycle?
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Ps--I've just read Dave Stuart's post from the 3rd May 2017, very encouraging to know about other treatments and I really like his "strap line" too---especially the bit about " incurable but treatable"-----thanks for that Dave.
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I see my Onco every 6 weeks. She gives me bloods forms for the next 2 chemos and always ticks the PSA box as well as all the others she wants tested.
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Originally Posted by: Online Community MemberPs--I've just read Dave Stuart's post from the 3rd May 2017, very encouraging to know about other treatments and I really like his "strap line" too---especially the bit about " incurable but treatable"-----thanks for that Dave.
Thanks
Keep going strong Valley boy,
There are many years ahead for you
Regards
Dave
"Incurable cancer does not mean it is untreatable and does not mean it is terminal either" |
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Just completed chemo/2 session all went ok no issues with infusions and again no side effects yet--just having my complimentary tuna sarnie and milk free yogurt then off home--what a life?? Ps gained internet access in hospital today and wish I hadn't as I spent a small fortune on line?? Hey-ho happy days!!!!!!
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Simple matter on the blood tests. I have a stock of forms all of which show the required tests, including PSA, as printed out by the Oncology Nurse at my last three weekly meeting to approve the next cycle. The Chemotherapy Nurse during the infusion puts the relevant figures: Hb, WBC, Plts,. Neuts and PSA into my personal treatment booklet. Perhaps all hospitals don't do this? If not, why not?
AC
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Thanks AC--just looked at my form for my next bloods in 3 weeks and it's all "double Dutch" to me--tests being done are--U&E. LFT. Bone profile. And FBC And don't get me wrong I'm glad they are being done and for the treatment I'm getting but any ideas what those tests refer to?
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Urea and Electrolytes, Liver Function Tests, Full Blood Count. With PSA, same as mine. AC
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Ok--1st week of chemo/2 update----all in all I still feel fine, walking at least an hour daily, also cutting grass and generally tidying up in the garden, a bit of sunshine really helps doesn't it? I've had a few headaches on waking over the past few days but these seem to clear up during the mornings. Poor sleep pattern over past few days --but this could be due to the fact that I had to take 12 steroids prior to chemo/2 infusion plus now taking 2 a day for next 21 days? Also our old dog has decided that it's a good idea to start barking from about 4am to go out for a pee!!!!!! ---So once again, as yet, no major issues re chemo/2 and unless something else kicks in before next week I ll update again in approx a weeks time. Stay strong, all the best J.
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Weeks 2/3 of chemo 2 update--other than a muzzy head for a few days in week 2 and a bout of the dreaded 'night sweats' after my 5th hormone injection last week all ok. So once again during this cycle only real side effect seems to be a few days fatigue spread out over the 3 weeks. Anyway off out for bloods this morning and If all' s well then it's Chemo/3 on Thursday. As previously I ll keep you posted as to progress. J.
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Chemo/3 update--infusion yesterday all good and today I feel fine too--also good news on the PSA front as you ll see from my original post that my initial PSA reading in March was 1547 whereas its now down to 157 !! Obviously there's still work to do as I believe that under 5 is a good score for over 60's? However I ll take the current 157 with open arms hoping that it will come down even further during my next 3 planned hormone treatments and chemo sessions!! "Cruciferous veggies rule ok"!!!!!
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Nice one - tough breed you Valley boys!
E
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Chemo/3 week 1 update---first 7 days of this cycle not too bad--few headaches on days 3 and 4 other than that all ok--however my hair is now definetly thinning whilst my beard looks like Catsweezle so back to square one there then--ok now where's that bloody razor!!!!😜 Ps my 4th chemo infusion and my 5th 4 weekly hormone injection are both due on the 15th June, my specialist's say this is ok so I'm going for it--however just out of curiosity has anyone else had both treatments on the same day and if so, how did you cope.thanks.
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Chemo/3 week 2 update--much the same as last week however for the first time in a cycle my headaches and general lightheadnesses on waking have continued into week 2? Other than that all ok with appetite taste etc unaffected. I've also had a few additional days this week where I've been completely knackered in the afternoons, days 11--13, however this may well be down to me doing too much the day before feeling tired--as at the moment my mind-set is-- if you feel up to it do it !! Anyway as stated previously next week I've got both hormone injection and chemo infusion on the same day so let's see what that brings? Ps I've also got a C T scan on Tuesday to re-check my lungs as on my original scan in March some nodules were detected in this area so they are having another look to see if any changes are apparent? And again I ll post results next week in my final update from this cycle. All the best J.
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Ok just had a bit of a set-back in that I've just been informed that my PSA has risen from 157 in May, (originally 1571 in Feb), to 176.9 today??and whilst I ll be querying it at my next chemo session tmos, has anyone had a similar experience? and if so what caused the raise? E.g. Has my degaralix HT treatment failed after only 4 months? All comments gratefully received Thanks J.