"The road ahead"!

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

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

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

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?

Thanks

Keep going strong Valley boy,

There are many years ahead for you

Regards

Dave

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.

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. 😀

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

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.

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.

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.

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.

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

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

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)!!!!

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

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.

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

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.

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.

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.

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

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.

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.

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

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

Enjoy

Good on you! I'll raise a glass to you (any excuse).

R

Cheers

Devonmaid

It's great to read some positive news. Lets hope for even better by December.

Happy to hear so.
Good news are always welcome. Made my evening a bit better 👍.
Xx
Lola

Great news

Dave

All in all side effects have been manageable so far.

Hope that helps

A

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 

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

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

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”!!😀

Good luck Valley boy wish you well with your treatment.

John.

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.

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!,! 😂😜

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

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

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.

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.

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

 Thanks for the support yes YM is the flat bit

onward and upwards!!

Ian

All the best.

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

Keep the Faith

J.

All sounds good enjoy the holiday and a happy new year  R

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

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

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

Great to hear you have lost severe aches and can golf etc.

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.

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 ...

A very mixed bag Valleyboy. Hope blood transfusion gives you a boost.

Ian

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

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.

My very best wishes Valleyboy.

Regards

Dave

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.  

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

Hope all goes well. Brilliant amount raised, well done on that.

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

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

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

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

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.

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

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

Good Luck, I hope it all goes well for you.

All the best Valleyboy. Hope the treatment works in your case.

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

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

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

As you say your having a rough ride valley boy hope all this settled down for you soon 

keep the faith 

best wishes 

R

Thanks for sharing this Valleyboy. Hope this treatment works for you despite the rough ride. 

Hi Valleyboy

Sounds like your dealing with the side effects as best you can, I get really hot in the night  nothing compared to what your experiencing but leads to interrupted sleep anyway big game tomorrow early start for us so looking forward to an England Wales final .

keep the faith

R

As with my previous treatment I had 1 x sweat last night, but on checking my diary I notice that was very similar to how it went last time as my main heavy sweats started after approx day 3 post treatment.

I queried all off my side effects with my consultant and at the moment he’s not too concerned with those, as he is hoping that it’s a sign that the treatment is working?? However he’s reserving his judgement until after my 2nd PSMA/PET/CT scan on the 20th December, when he ll have a full picture of what’s happened between October and December.

Also Spoke to quite a well informed nurse there who also answered loads of my queries on this issue, and again put my mind at rest on a lot of issues.

Anyway regular bloods to be taken every two weeks to keep and eye on my kidney, liver and red blood cell counts so it’s onwards and upwards and let’s see what happens over the next few weeks.

Keep the Faith

J.

Then another PSMA/PET/CT scan on 20th December will allow my specialist to compare that scan with the original one I had in October, again to see if there’s any change in tumour size/bone activity etc.

Telephone consultation also being booked with my Bristol consultant for early next week, so dependant on his views then I ll update accordingly.

Keep the Faith

J.

Well I am pretty sure it is working for you. The lack of pain is a massive clue, but it will the PSA drop and the next PSMA Scan that will be the proof

Fingers crossed for you Vallleyboy.

Keep  the faith

Dave

Keep the Faith

J.

Have a good Christmas Valleyboy, hope all goes well today.

Merry Christmas Valleyboy.

Keep the faith

Regards

Dave

Yep a really good start to the new year for you, hoping it gets better along the way. 

Met with oncologist today and that's my PSA down to 1.2 now after 8 weeks on enzalutamide so quietly happy too. 

Cheers

Sandy

Lutetium 177 appears to be working well.

Brilliant

Regards

Dave