Father, 76, just diagnosed with Advanced PC. Any wisdom appreciated

User

Posted 16 Jul 2019 at 21:23

Hi Alun

just to let you know that my hubby was diagnosed more than eight years ago, Gleason 10 and mets in many bones and Lymph nodes. He’s still with us (though things are difficult now). We were told around two years as a prognosis but what a load of rubbish that was. John had chemo last year and was fine really, just one episode of flu that led to him being hospitalised. John was 61 when diagnosed and swore he’d make 70, and he has.

good luck for your dad,

love Devonmaid xxx

User

Posted 18 Jul 2019 at 15:50

Hi Alun,

I was diagnosed in Aug 2016 with advanced PCa and a PSA of 529 at the age of 75. I had damage to the lymph nodes which has led to Lymphoedema. I had early chemo which was not too bad- the worst part was constipation at the start! You do need to check your temperature several times a day to guard against sepsis. I felt weak but managed short level walks on most days. Since the chemo, I have carried on cycling and sailing and have just done an 800-mile charity bike ride. I would certainly recommend early chemo. I am also on Arm K of the Stampede trial (taking Metformin twice a day).

I wish your Dad all the best,

Gromit.

User

Posted 28 Jul 2019 at 14:30

Hi all, I am 76 and was diagnosed with Advanced Prostate Cancer in August 2018. I thought I would share my experiences over the last year to help (maybe) others in coming to terms with this unwelcome event in our lives.

My details are: DRE, Biopsy, CT & Bone Scans and various blood tests, PSA 564.4, Gleason 5+4 in 10/11 cores and bone mets (skull to pelvis). My general health was good being active, non-smoker for life, not obese, without heart, asthma or diabetic issues, not on any drugs; do like a drink though !!. Following a meeting with various professionals and weighing up the Stampede research, I decided to go ahead with chemotherapy.

I was started on Hormone treatment (Bicalutamide) followed quickly by Zoladex injections, with the first of 6 chemotherapy (Docetaxel) sessions started on 3rd October. I kept a fairly detailed log of my progress which it has to be said is pretty boring and really minor. Was I lucky or what ??!!

The hormone treatment gave me hot flushes, slightly enlarged breasts and thinning hair. I must point out at this time I had decided that if I was going to have hair loss issues then I would control them, so I had a number 2 crew cut, so the thinning hair never seemed so bad but I never lost it all. To this day it is growing strongly although I have decided to keep it short; one thing "IT'S GROWING BACK CURLY"

One thing that I didn't mention earlier was that I had had a reflux problem some years back and this erupted again but was kept under control with Lansoprazole and I'm now coming back off this.

Over the period of the treatment the night time pees has come down from 4 to 0/1 and diarrhoea and sickness have never been more than an irritation, apart from my first session on returning home, I suffered some pretty severe diarrhoea and sickness and over the following few days was "loose" but it didn't last and didn't happen again. Only on one day over the whole treatment period did I feel so tired that I went to sleep on my return. I have slept well eaten everything as normal although it is fair to say that during the treatment the taste buds were shot to bits; OK now.

Over the treatment period the fitness and stamina dropped off dramatically, but they are virtually back to where they were pre C. Finger and toe nails didn't actually come off but they were bit sensitive and looked pretty horrible. I also had puffy legs and sensitive ankles but no real pain, just minor discomfort; this is still present as are the aches in the lower back, shoulders, arms and hands which had dropped off during the treatment.

So during the treatment period the side effects really didn't amount to much and didn't seriously affect my life which brings us to the first proper review with blood tests and CT & Bone scans in February 2019. Well this was a real eureka moment the PSA was down to 1 and everything else looked hunky dory and I felt pretty good.

At the next review (blood test only) 27th June the results were not so good the PSA had gone back up to 18 and there was minor movement on the bone results but everything else was OK. Well I have to say this was real bummer after the previous review, but the consultant didn't seem too perturbed and put me on an additional hormone tablet (Bicalutamide again) to assess progress later - next review 15th August - fingers crossed.

Sorry for this rather long item, but it tells my story and it might help or comfort others. One piece of advice I was given early in this process "record the interviews" because believe me you will not remember everything you are hearing. All through this experience the NHS has performed impeccably which is more than can be said for the parking arrangements which turned out to be more stressful than the treatment.

Clive

User

Posted 31 Jul 2019 at 19:25

Just diagnosed aged 83. My psa was 134. I had MRI and bone scan which sowed local spread to seminal vesicles but none to bone or organs. I have only been offered Zoladex injections as I also have ulcerative colitis. My second injection is tomorrow.

My wife had docetaxol for breast cancer some years ago. She has been well ever since.

User

Posted 12 Sep 2019 at 17:25

My Husband was diagnosed in 2015 with Advanced Prostate Cancer with mets in his lymph nodes and aorta. It is not curable. His Psa was 2315. His Gleason was 8. He had more or less immediate hormone treatment with decapeptyl and was due 6 rounds of Chemo. He was 71 at the time. He was scanned and it had not spread to his bones. He was not given any time scale for survival as I suspect they thought that although they would try treatment it would be a long shot.

He responded generally well to the treatment and his psa gradually reduced after 18 months to 1. I won't say it was a walk in the park but we focused on getting him well. For him the combination of Chemo and hormone treatment worked. Luckily there have been many clinical trials which have produced many new treatments and combinations of treatments.

There are side effects but they are different for everyone and my Husband is here 4 years later.

It is important to try to stay positive and take one step at a time. It is very upsetting being diagnosed with cancer. It is always in your mind. It changes over time as you focus on getting them well.

In his case he had no symptoms at all. I do believe there should be some sort of screening as they have for Breast and bowel cancer.

If I can be of any more help please just ask.

Kind Regards

Carol

User

Posted 17 Oct 2019 at 14:18

Well hello again. Sorry for the long delay since my last contribution, but as you will see I've had a lot on my plate.

The August meeting with the consultant showed yet more deterioration in the PSA up to 54. I was still feeling very good in myself with no particular bad side effects. The consultant offered a new treatment plan to move us forward as clearly Zoladex on it's own was losing the battle. I was put back on to Bicalutamide for a month until agreement was sought and approved for me to go onto Zytiga (Aberiterone) and Prednisolone. A further meeting was set up for 8th October which was preceded by CT and Bone scans and Blood tests; I was started on the new programme immediately. Depressingly the Blood tests again showed an increase in the PSA to 64.

Today I saw the specialist oncology nurse and together with another Blood test an initial assessment was made to determine the continuing course of action. Whilst it was accepted there was not enough time to properly evaluate the progress there had been a reduction in the PSA to 45.

The recent scans revealed no particular movement since February apart from the bone scan with two small deteriorations, one in the right shoulder and a new incident by the right eye. Again it has to be said that the new treatment has only just started so progress might be slow and any short term results misleading.

Currently my general health continues to be good with no really bad side effects apart from the hot flushes which do seem to have been worse recently.

Since January 2019 when my chemo finished my wife and I were determined, my fitness permitting, to carry out the plans we had considered before this event took over our world. We tow a caravan and have done so for 30 years and we did not want to see this stop. We live in Horsham West Sussex and had holidays in Sidmouth Devon, North Yorkshire and we have just come back from a 4 week holiday meeting friends in Holland. On none of these trips did I feel under strain from the aPC / treatment. You cannot imagine the tremendous confidence it gives one when you are able to do something like this. One interesting point at the August meeting with the consultant was when we said we had planned a 4 week caravan holiday in Holland, he was positively enthusiastic; my and I both thought he would be against it. Also during this period I have been able to continue my hobby, fishing, and whilst currently booking holidays is difficult because of the bi-weekly supervision regime, I have stolen a weeks fishing away.

Whilst luck has a huge part to play in how we cope, just keep doing what you enjoy for as long as you can.

Clive

User

Posted 14 Dec 2019 at 17:48

HI,

Am currently on my 5th round of chemo. out of 6 planned sessions and side effects not too bad.I am about your dads age (see my bio on here) If he is otherwise in reasonable health he should considerThey give you various meds. to help cope with the treatment (anti nausea sickness tablets etc ) .As others have said with the prospect of another couple of years of good health proved by the Stampede trials its a bit of a no brainer.If he has a terrible reaction to the chemo. they can reduce the dose or take him off it altogether.

Best wishes to you both.

Norm

User

Posted 06 Jan 2020 at 23:56

Hi all, an update on my father...

The good news is that he tolerated his 6 rounds of chemo very well, with little to no side effects. His PSA also responded well, down from 200-300 pre chemo, to now 0.4 after chemo

He responded so well to chemo that he was offered radiotherapy, but here's the bad news...

...On the CT scans post chemo (to determine where radiotherapy would be targeted to) they found >5 but <10 'tiny' 'scattered' mets in the bone, all around the pubic bone, pelvis, base of spine, and was then told his radotherapy is cancelled as it would more harm than good and wouldn't change his outcome. Was told they are likely not new mets, but were previous micro-mets now show up/illuminated post chemo

So now he will remain on Prostap, until it stops working, and then look to Abi or Enza as next treatment option

Dad really scared that bone mets definitely equal short life expectancy, and now planning for the end. Really upsetting

Thanks for sharing any thoughts. Is there hope if you have bone mets? He is 77, advanced mHSPC, Gleason 9, otherwise fit, with no current pain

Edited by member 06 Jan 2020 at 23:57 | Reason: Not specified

User

Posted 07 Jan 2020 at 06:46

We have members here that have done 10 years + more with bone mets. RT would have been pointless with so many mets.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 07 Jan 2020 at 06:53

Thank you. Disappointed that RT not an option now, but I do understand all it would be doing is giving toxicity with no benefits, in my fathers case

Would be really interested in hearing from such members who have bone mets for a long time, and what their journey has been so far

Much appreciated

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