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"The road ahead"!

User
Posted 29 Mar 2017 at 14:27
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
Posted 29 Mar 2017 at 22:29
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
User
Posted 20 Apr 2017 at 23:36

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

User
Posted 14 Jun 2017 at 13:31

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.

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User
Posted 29 Mar 2017 at 16:20

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
Posted 29 Mar 2017 at 18:31

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

User
Posted 29 Mar 2017 at 22:29
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
User
Posted 30 Mar 2017 at 09:59

 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
Posted 05 Apr 2017 at 14:52

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"!!!!!!!!!!!

User
Posted 05 Apr 2017 at 15:48
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

User
Posted 05 Apr 2017 at 17:23

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

User
Posted 05 Apr 2017 at 18:25

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

User
Posted 11 Apr 2017 at 21:00

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)!!!!

User
Posted 11 Apr 2017 at 23:48

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

User
Posted 12 Apr 2017 at 08:26
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

User
Posted 12 Apr 2017 at 16:52

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  | Reason: Not specified

User
Posted 12 Apr 2017 at 17:59

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
Posted 12 Apr 2017 at 20:54

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
Posted 12 Apr 2017 at 23:45

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

User
Posted 13 Apr 2017 at 21:38

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?

User
Posted 14 Apr 2017 at 22:23

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?

User
Posted 15 Apr 2017 at 21:56

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!!!!

User
Posted 17 Apr 2017 at 19:24

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
Posted 17 Apr 2017 at 20:26

Keep on trucking!

E

User
Posted 18 Apr 2017 at 07:31

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

User
Posted 20 Apr 2017 at 20:03

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
Posted 20 Apr 2017 at 21:21

Yay for small victories.

User
Posted 20 Apr 2017 at 23:36

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

User
Posted 23 Apr 2017 at 11:21

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!!!

User
Posted 24 Apr 2017 at 12:20
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

User
Posted 26 Apr 2017 at 16:04

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
Posted 03 May 2017 at 07:13

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.

User
Posted 03 May 2017 at 08:17

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

User
Posted 03 May 2017 at 08:41

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.

User
Posted 03 May 2017 at 17:38
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.

User
Posted 03 May 2017 at 21:19

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--

User
Posted 03 May 2017 at 21:54
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
Posted 03 May 2017 at 22:08

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!

User
Posted 03 May 2017 at 22:55

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?

User
Posted 03 May 2017 at 23:08

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.

User
Posted 04 May 2017 at 04:01

Originally Posted by: Online Community Member
I was just wondering how "AC" seems to be getting his PSA results with every cycle?

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.

User
Posted 04 May 2017 at 07:15
Originally Posted by: Online Community Member

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.

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"
User
Posted 04 May 2017 at 15:16

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!!!!!!

User
Posted 04 May 2017 at 18:19

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

User
Posted 04 May 2017 at 20:09

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?

User
Posted 05 May 2017 at 17:39

Urea and Electrolytes, Liver Function Tests, Full Blood Count. With PSA, same as mine. AC

User
Posted 10 May 2017 at 08:01

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.

User
Posted 23 May 2017 at 06:32

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.

User
Posted 26 May 2017 at 20:25

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"!!!!!

User
Posted 26 May 2017 at 21:31

Nice one - tough breed you Valley boys!

E

x

User
Posted 01 Jun 2017 at 15:30

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.

User
Posted 08 Jun 2017 at 14:43

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.

User
Posted 14 Jun 2017 at 12:49

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.

 
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