Dad recently diagnosed

[Clarejb]

Hello,

I'm here on behalf of my lovely dad (aged 70) who was diagnosed with advanced prostate cancer in October 2017 . The cancer has spread to the seminal vesicles and he has bone mets (pubic bone and rib). He was offered a radical prostatectomy (Trombone trial) as he has limited metastasis but has opted not to have this.

The results of his Trus biopsy were inconclusive so he was sent for a template biopsy. His Gleasons score is 8 and his staging T3N0M1. His PSA was 48 at the time of diagnosis and hasn't been checked again since.

So far he has been receiving hormone therapy (started monthly injections and has now switched to every 3 months)

At the last hospital appointment he has been offered Chemo and also clinical trial (Arm K- Metformin) and I think he will opt in for both.

It came as a massive shock to us as aside from mild emphysema he is a healthy, happy 70 year old enjoying life. He has a healthy, vegetarian (pescatarian) diet (also eats fish/seafood) but does enjoy a few ales every weekend.

He had some pain in his pelvis/groin area over 18 months prior to diagnosis and was sent for physio (no scans were taken at this time). It eventually subsided and was not investigated any further. Aside from the odd niggle, it hasn't really affected him but has seemed to flare up since starting on the hormone therapy. I wondered if anyone else had experienced anything similar?

I also wondered how long other men have suffered with bone pain before being diagnosed?

I would love to hear from anyone with a similar diagnosis or who has already been through chemo or from anyone who is on the clinical trial taking metformin.

Thanks in advance to all you brave men out there who are able to share your knowledge and personal experiences of this disease.

[Hidden]

I went through chemo after being diagnosed stage 4. PSA 850. I also had,(have bone mets). It was a breeze. I know that others on this site are tired of seeing me post the following but whatever. At age 64, I started the chemo thing. I did six courses three weeks apart. While going through the six courses, I continued to run 4 times a week, 5 miles per run in 80 degree heat on shadeless, country roads. Yes it was rough. No I didn't puke. The worst thing that happened to me was the fact that my armpit hair didn't grow back. Tell your dad to dig and get ready for the long haul because more than likely he has a long way to go. Final note, don't Google the life expectancy charts. They are outdated. According to the charts, my carbon should be drifting through the cosmos by now. I feel great. Current PSA is 0.1 Disclaimer, I'm not a doctor.

Oh, almost forgot, follow a member here who goes by the name pjoshea13. The guy is a prostate cancer genius. I wish he was my oncologist.

Of course what do I know?

[AlanMeyer in reply to Hidden]

Nameless9999 wrote:

> "I know that others on this site are tired of seeing me post the following but ..."

Speaking for myself, I never get tired of reading success stories. I think you should continue posting it whenever someone (like Clare I think) could benefit from hearing it.

Alan

[Hidden in reply to AlanMeyer]

AlanMeyer - It's just being me and my smart alex self. But you have given me food for thought. Thank you sir.

[Dan59 in reply to Hidden]

Every time you post it inspires me to keep going, don’t stop. I wish Patrick was my Oncologist too, We are lucky he post so much info here.

[Clarejb in reply to Hidden]

Thanks so much for your response, I'm so glad to hear that you are doing so well and that you remain really positive and are living life to the fullest .That's definitely what we need to hear right now. After the initial blow, dad is starting to talk about the future, hopefully he has many years ahead of him. I will look up the man you mentioned. Thanks again

[Hidden in reply to Clarejb]

Clarejb - Your father should be talking about the future because he has one. Tell him to start planning his 2019 vacation while the prices are still low. Btw, I'm a vegan, maybe your father and me can share a head of organic cabbage someday. Now chill, relax, and smile again. Your fathers life is different now, he needs to adapt. I did and it's not all that bad. I still dance to old Led Zeppelin songs when my wife is gone. (I'm pretty good) !

[Roland632017 in reply to Hidden]

Hi nameless9999

I would encourage you keep encouraging our new members. I am glad to sneak in to spy on you. No offence intended.

It's great to recognise your extremely low PSA. I had a reading of 10.13 from my blood drawn on 10 Dec 17 in between 2x9 holes golf and a lovely ejaculation which today I found out it is strictly not s recommended practice.

[AlanMeyer]

Hello Clare,

I'm sorry to hear of your Dad's diagnosis.

There is disagreement now about whether a prostatectomy can help a man in your Dad's situation and a clinical trial is starting up to try to find out who can be helped by it, but I think the majority opinion is that, with "distant metastases" (i.e., away from the prostate, such as the rib metastases), there is no real benefit from the surgery while there is a definite harm done by the surgery itself. I'm not sure but I think that if I were in your Dad's situation I would have made the same decision he did.

Regarding the bone pain, since no one ever found the cause and no scans were done, it's hard to know whether the cancer was the cause. It could have been, but the fact that the pain subsided over time could also mean that it was something else. I haven't had bone pain myself but it seems like most of the reports of it that I see on this forum are of pain that gets steadily worse, not pain that goes away for any significant time. But, either way, I guess that's all water under the bridge now.

I will be surprised if he is accepted for both the chemo trial and the metformin trial. The problem with being in both trials at once is that, when the trial investigators see changes in his condition, they can't be sure which drug caused the change. That makes it impossible for them to say which trial procedure worked for him.

I'm no expert but, as a layman, I'm thinking about the situation this way: Chemotherapy with docetaxel is a more powerful treatment than metformin but also has more adverse side effects. We know from already completed trials that docetaxel given with the standard hormone therapy drugs (Lupron, Zoladex, Eligard - they're different brands of what is very close to the same drug), provides significantly longer life on average than one drug followed by the other. As an otherwise healthy 70 year old, he could live another decade or even two if he can beat the cancer. So I'd kinda, sorta lean toward the aggressive treatment. It won't cure his cancer but it might beat it down so that, with standard hormone therapy, he could get his decade or two, or at least last until the next generation of drugs comes out - which I think may only take a few years. However I'd want to get the opinion of a really good specialist before making a decision. To get such an opinion, your Dad needs to talk to a medical oncologist (not a urologist) who specializes in prostate and related cancers. There are 300 kinds of cancer, each of which often has many subtypes, and no human being can keep up with the latest research in all 300 kinds. That's why you want someone who is a prostate cancer specialist. Often they can be found in the teaching and research hospitals. See for example this list: cancer.gov/research/nci-rol...

You're doing good work to research this kind of information for your Dad. I wish him the best of luck and good luck to you and the rest of your family.

Alan

[AlanMeyer in reply to AlanMeyer]

Here's another idea about talking to a specialist. Your Dad can call one of the trial location phone numbers. If he doesn't have the number, it can be found by locating the trial in clinicaltrials.gov or in cancer.gov . He can probably get an appointment with the trial investigator or one of his interns or residents. They should know a lot about the treatment and can discuss it knowledgeably and, hopefully, render a useful opinion about the other trial too (print out the description of the other trial before going.) It's very possible that there will be no charge for this consultation since it's needed for entrance to the trial anyway.

Alan

[Clarejb in reply to AlanMeyer]

Thanks Alan

[Clarejb in reply to AlanMeyer]

Thanks so much for all you information and for taking the time to write such an in depth response. I sincerely appreciate it. I know that my dad did see an oncologist on his last visit and a quick internet search shows that she specialises in prostate cancer so that's a big bonus. From what I gathered it seems that the chemo has been offered along with the standard hormone treatment and the metformin in part of the stampede clinical trial which is presumably why he can have both. He is keen to go down the aggressive treatment route to try and hit it hard. If he does also decide on taking part in the the clinical trial, i've heard that metformin is (fingers crossed) well tolerated with minimal side effects.

Thanks again for your reply, I will rely the info into my Dad. Cheers!

[Dan59]

If I understand , Your Dad has not had a psa, nor a testosterone test since being on hormone shots, He should be getting his psa tested to monitor progression as well as testosterone to know if hormone shot is reducing testosterone to castrate level.

My first thought on trial is that Patrick on this site has studies showing clear benefit for Men on Hormone shots taking metformin, Hormone shots heretofore known as Androgen deprivation Therapy Or ADT. Metformin is cheap and I do not think you need a trial for that. I am sure there are others tired of me posting my stats here, but as a message of hope.I was dxed stage 4 Gleason5,5 10 bpsa 148 with widespead bone mets and Ln back in 2006 I was 49 , am now 61. I did 12 rounds of chemo last year, made it through fine, you can read my post during that time on my page. I think Alan Myer had an excellent post here. From what I know of cancer pain it does not just go away ,can be relieved with therapy,ADT or other. I think when we find out we have bone disease ,we often attribute every pain we Feel to the bone mets and often it is not related. Keep us posted.

Dan

[Clarejb in reply to Dan59]

Hi Dan,

Thank you for your reply and for sharing your stats. I doubt anyone is getting tired of you posting your stats, especially for people that are new to the discussion. Its so great to hear you are doing so well after being diagnosed such a long time ago. This really does give those who have been diagnosed and their families great hope.

I will speak to my dad tomorrow about when he will next have his PSA checked as its been two months since his first zoladex shot.

I am hoping that the pain he was having may now be unrelated to the bone mets. I will read your post regarding the chemo. Thanks for sharing.

All the best

Clare

[Break60 in reply to Dan59]

I’ve been taking metformin since 2015 and don’t see why it needs to be taken in the context of a CT.

Bob

[Clarejb in reply to Break60]

Hi Bob,

It's what they are now offering as part of the STAMPEDE trial. We are in the UK so I'm unsure if this may be being used more commonly elsewhere to treat PC? I know that's it's a drug taken to lower blood sugar levels in diabetes

[Hidden in reply to Dan59]

As always I admire your post.. didn’t realize that you’ve been fighting this that long. Wow since 2006 ..That’s quite a feet.. Aamazing.

[E2-Guy]

Question for you PCa gurus out there? I read somewhere (can't recall where) that age is actually on our side since metabolism rates slow down, consequently slowing down everything including abnormal cell growth. Any validity to this statement?

[tonmead]

Hello Clare,

My journey is very similar to your fathers. I was diagnosed in Oct 2016, after an attack of gout and quite severe back pain. Had an MRI and TRUS sample taken. PSA at this time was 1096 with a Gleason score of 3+4. Started on 3 monthly hormone jab in Nov 16 ,bone pain gone by Jan 17. Started docetaxel chemo in Feb 17. Tolerated chemo well, loss of hair only side effect plus feeling yuk for two to three days after infusion. I am in UK also and was offered Metformin on the STAMPEDE trial, which I went for. It made me feel a little sick to start with but now its just another two pills a day. Chemo finished at the of May 17. Have now recovered hair and am feeling well. PSA is now 2.6 and MRI, taken Oct, shows shrinkage of lymph nodes, which were implicated at previous MRI. I am 70 this Friday and also enjoy a weekend beer or three. Holiday booked for March, till then am carrying on as normal. Best of luck with your Dads treatment.

Tony

[Clarejb in reply to tonmead]

Hi Tony,

Thank you so much for your reply, i'm blown away by all the support and responses to my post on here and am so grateful that you have shared your story as it looks like my dads treatment will be almost identical to yours. I feel like i'm learning so much from all the people that have posted and it really is a great comfort. I am so happy to hear that the treatment is working well for you. My dad lost all his hair many years ago so at least thats one side effect he wont have to worry to much about! Wishing you a very happy 70th birthday on Friday and hope you have something special planned.

All the best,

Clare

[Hidden in reply to tonmead]

Congratulation on shrinking those lymph nodes..

[Sisira]

Salute to all of you in a row ! - pjoshea13, AlanMeyer, Dan59, and nameless9999 ( Hi friend ).

Clare, excellent rescue operation for your dad by these captains. All of us too are pulling for you. Admire your being a wonderful daughter for your dad! Hope for the best!

Sisira

[Clarejb in reply to Sisira]

Hi Sisira,

Thank you so much for your kind message, I am so glad I found this site and am so grateful for all the responses. Feeling much more optimistic about dads future treatments having now heard from many men who have shared their own stories on here or have offered their knowledge and support.

We are a small family, i'm an only child and would literally do anything to make my dad well again. I think being as well informed as possible is key and this is an opportunity to learn as much as I can from all the wonderful people on here.

Best wishes,

Clare

[Lunbo]

Hi, I'm 80 and have been fighting the beast for 16 years without a lot of life altering effects having been thru radiation, ADT, newer drugs like ZYtiga and Xtandi. So tell him to stay positive, keep doing what he's doing and get an aggressive MO to work with him in managing the disease and he will have another 20 years of fun.

[Clarejb in reply to Lunbo]

Thank you so much for your positive response. It is genuinely so great hear that you have been kicking the beasts butt for so long even after so many different treatments. I am starting to feel much more confident that i'll have my dad around for many years yet.

All the best to you

Clare x

[Hidden in reply to Lunbo]

Great inspiration to all of us. Thank you !