I learned on October of this year that I had metastatic prostate cancer. I am currently following an experimental care program in France developed by the Gustave Roussy Institute in Villejuif, named peace 1.
This program combines hormone therapy, chemotherapy, radiotherapy and zytiga. I would like to know if in the United States you have developed other protocols of care in the case that the one I am currently in was not effective.
I am looking for any kind of help, advice and support because I just want to live. My case is apparently very rare, cancers of this type before 40 years are really not frequent.
Thanking you very sincerely for your attention,
Best regards
Chris
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Christophe87
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Hi Chris I am in a similar situation diagnosed this year at 47 Gleason scale of 9 with multiple lymph spread. It’s a difficult time finding out that you have prostate cancer and the initial few months were the most difficult. They appear to have put you on a very aggressive programme which sounds reassuring. The men on this forum are amazing, they help with advice both on the physical and mental battles we face. They made me realise that there are many treatments with new ones being developed which will help over the coming years. A recent study into prostate cancer being treated with tape worm medication is an interesting read. If you want a little more detail in the answers perhaps you could tell us your Gleason scale, PSA and where the cancer has matatisized. I was only just reading a post from a man diagnosed with Gleason 9 cancer in 2002, these men inspire me. I’m in the UK having Zytiga and Zoladex and predistone as my first line treatment. Please keep in touch we are all here for you. If you read my initial post upon diagnosis and see the posts put up from some of the men it will truly lift your spirits and help with your new worries and concerns this diagnosis brings. Your young strong and can use some very aggressive techniques against your cancer. There are many men on here who are still alive and fighting decades after very severe diagnosis, that keeps me walking forward and keeps my positive mental attitude. 👍
Thank you very much for your answer and all your encouragement. i don't know my Gleason scale i never heard about it. I only know that the 12 samples taken at the time of my biospie had a score of 8 or 9 out of 10. My PSA was 724 ng now 83 after one month of treatment. The cancer matatisized in some bones and seemingly in lungs.
I really hope to get well, and have a normal life. For the momet it is too early to know if the treatment will work but the hormone therapy works well since after only one month my PSA rate has passed as I said from 724 ng to 80 ng.
What reassures me is knowing that I am not alone and that there are some people all over the world who have lived this ordeal, who are attentive and who can encourage us. This first answer after this message as a bottle thrown to the sea gives me hope. a huge thank you Apollo13.
Sorry for my english, i was more fluent formely but maybe this situation would be an occasion to improve it
Your current treatment is similar to my husband's. He is 57. Recent studies have shown that using chemotherapy and other drugs early is a very effective approach. It sounds like your doctors are being very aggressive because you are so young. And that is a good thing!
So sorry to hear someone at your age with advanced prostate cancer. I'm glad you found this group. One of hardest things for me when I was first diagnosed was feeling alone so it's so good to be around others in the same situation for support.
I'm glad you are on an agressive treatment approach because the recent trials have shown hitting it early and aggressively gives you the best survial times. I did early chemotherapy with a good result. My last PSA was 0.19.
I'm curious, have you had genetic testing to see if you have any mutations? There are a number of "targeted treatments" available if you do. Also, did they see any neuroendocrine cells in your biopsy? That would also impact the direction of your treatment plan.
Hi Chris , Welcome to the group. The 8 or 9 out of 10 score was most likely the Gleason score. It is good that you have found such aggressive treatment, I wish you the best, are you having any side effects from chemo?
I was dxed in 2006 at 49 years old with stage 4 and widespread mets, they thought they saw it in my lung too, but after a while that was determined to be an unrelated benign event, we will hope that for you too. I want to say as others have said, You are not alone , we are all here for you.
It is early to see the results, but I'm glad to see your doctors have chosen an aggressive approach. When I was diagnosed in 2007 at age 43, the treatment standard was different, and I'm sill kicking. I'm especially glad to see the early use of chemo, as studies have suggested using it early and in combination can yield good results. Hang in there!
BTW, there is also a group here for gay men. Many of us are concerned about how PCA interacts with gay identity. If you want to pop in there, too, you will likely find supportive and honest conversation about dating, sex and other issues.
Hang in there, Chris. I was just diagnosed recently and have a Gleason 9/high risk. I'm 54 which also seems a bit young for aggressive prostate cancer. I can't help you with your question as I am quite new to this whole thing as well but I wanted you to know that I understand the fear and trepidation you are going through. It seems like there are lots of answers here. I'm sure one of the vets will share their experience with you. France is an amazing country.
Hello. I can talk to you by Skype later this week ( I'm the clinician that developed the field of LGBT psycho-oncology and gay prostate cancer research). Message me here or at darrylm@malecare.org. FYI mon francais est merde
I am very sorry to hear of a man with prostate cancer at age 37. You are not the only man to be diagnosed that young, but there are very few. You are very unlucky to have the disease at that age. However, you are very lucky to be getting treatment at Gustave Roussy Institute. It sounds like you are being treated with the most advanced possible treatments. These may keep you alive for many, many years.
The science of cancer treatment is advancing more quickly than ever before. The treatment you are receiving is far more advanced than the treatment many of us had 5, 10, or 20 years ago and yet many of us are still alive. More new treatments are arriving at a regular pace. A lot of work is being done on immunotherapy attempting to get your own immune system to fight the cancer. That did not exist until a few years ago and the science is advancing rapidly. There are also new experimental "targeted therapies". They use "monoclonal antibodies", molecules that seek out tumor cells and deliver chemotherapy drugs, radiation, or other treatments just to those cells. Already some of these treatments are starting to be in regular use and more are in development.
Every one of the treatments you are getting now is a proven killer of prostate tumor cells. Newer treatments are already in clinical trials and the ones that work will probably be identified by the time you need them. 20 years ago, and maybe less, your cancer would definitely have been fatal. Now however there is a chance that you will live to old age. Every year that you live will increase that chance.
It is hard not to be depressed. Your life has changed and it is a shock. Sometimes you will not be able to sleep and sometimes you may cry. That is normal. Don't let it discourage you. It happens to us all. Fight against depression! Stay strong! Exercise! Eat properly! Sleep 8 or 9 hours each night! Listen to music! Spend time with your friends! As we say in English, "Be of good cheer!" These will all help you to conquer this disease.
Salut Chris! Ne t'inquiète pas; ton anglais est beaucoup mieux que tu penses, mieux que mon français, j'en suis sûr. But I should speak English for everyone else--I too recommend the gay men's group as well as this one, it was very helpful to me. Sorry to hear of your diagnosis, and I wish you the best in beating the hell out of the disease!
Tres ravie de s'avoir qu'il y a une communite francophone sur ce site! Je suis francaise et mon mari est americain! Ton francais est impececcable btw...
Oui, enfin, je suis la femme de mom mari AnthonyQ. C'est lui qui a le cancer. Mais nous sommes tres reconnaisant pour ce forum! Ravie de faire ta connaisance! J'espre que tout vas bien pour toi aussi.
Good luck with the care you are receiving! There is a lot of knowledge on here. I was 52 when diagnosed which started in a PSA test for a life insurance application. I would have not had a diagnostic test at your age, even though I had frequent prostate infections around then. Aggressive treatment coming your way. Look for it to be effective!
Hey guy!! You’re just a kid. I feel your pain brother. I heard of a 16 yr old with APC. Brutal for that young man. I was 54 and I felt early to this old mans party. Heavy at 37 I can imagine. Your youth should help you somewhat in treatments. You will endure young man. Most important to keep your sanity and a positive spirit. Peace to you.
My programme in England began with 11 months of ADT followed by 8 months of chemo with ADT continuing. 4/5 month break from chemo for body to readjust then Zytiga which I have had for 15 months...still with ADT. Great results as I was stage 4 @ diagnosis when diagnosed with 40+ bone Mets, lymphs gone from pelvic girdle, seminal vesicles both cancer. Could not have radiotherapy, surgery, or chemo at start.PSA. 200 now regular 0.03 or 0.04 monthly. Mets gone after chemo. Hit the cancer hard as early as possible. Good luck. David.
Are you aware there is a sister site specifically for gay people?
I hope you have access to Karim Fizazi at Villejuif, he is well known internationally and a top researcher in our disease. If you have him on your side you have the best. The treatment you describe is certainly the current standard for your case, as I understand it.
I am so sorry you have this. It is not fun at any age. This is a great site with a wonderful bunch of guys who have a lot of good advice. You are in good hands here. My husband and I have started a practice of meditation and have found it to be very helpful with dealing with the stress of disease. It helps us to focus and live in the present. It is my one main recommendation.
Bonnie chance, mon ami. 37, ç'est bien jeune (j'avais 52 ans), mais Villejuif est bien connu et bien respecté. Et il y a toujours des nouvelles traitements. Ça me donne de l'espoir. And by the way, your English is excellent. Mon français-- un peu roulli!
If you haven't already tested I recommend that you check for a BRCA1 or BRCA2 gene mutation.
These mutations also manifest in men as breast and prostate cancer even though they are primarily associated with women's breast and ovarian cancer.
If you are young with aggresive PC this could well be the reason. If this is the case you will find that you have a few additional tools at your disposal.
In the USA this test is cheap (around $100). If you pay yourself, this information will not be shared with others.
Well, i don’t Know what to say except a big thanks to everyone. I am going to fight, they are so many things to live to do, to hope. Hugs !!! Thanks !!
Me-diagnosed at 49, will be 70 in a few weeks. My disease was less, and not metastatic, so very different. I'm also gay, a health care person, dealing with prostate cancer in many ways. Recently retired, but still professionally active. I have seen many of the replies you have received, all supportive, and I'm sure welcomed.
I did see much advice, as well as someone stating how very individual the disease is and treatment options are-so very true!! Your PSA results are a measuring stick enabling you to gauge the progress you are making on treatment-good job, by the way!! Many men don't realize the PSA is an infinite number, and I have treated a man who initially started with a PSA of 3800-(not trying to minimize your number, but trying to give you background and a comparison). I have seen diet recommendations, and as yet, nothing is concrete for prostate cancer health or prevention. There have been trials, but no cigar yet! That being said, more fruits, veggies, grains, less red meat, more fish can only help with your wellness in general. Fine tune all you can it all helps, and it's something you can control and manage. Be good to yourself-try to eat well, rest well, and reduce your stressors (I know I sound like an ass saying this), but we should all be doing this. Be pro active with your heal team. Challenge them, ask questions, get answers, make your decisions when you understand your options, and be fierce and involved. Don't sell yourself short, or let anyone else do so!
I specifically joined this site to reply to you and be one of many who are on your supportive team-I send you only positive energies, and good wishes as you move forward with your treatment.
Thanks you so much for your answer. I am following my treatment and now my PSA is 32, i suppose it means that my body reacts well. I have heard about a new molecule develop in USA for treating cancer, but i don't have exact and clear information about it.
I am doing my best to get well. Life is strange, before to know i have a cancer, i never realised how much life is important, and it is more true since i fall in love with my boyfriend. My biggest fear is to loose him.
Not sure what your speaking of (molecule), but will keep my eyes/ears open for it. If you use the net to check for clinical trials for prostate cancer it will keep you current-I do the same.
Yes, life is important and a cancer diagnosis changes our perspective and priorities.... but think of those who die at 100 years old and haven't lived a day in their lives, were ever loved, or loved anyone......keep on keeping on!
No one knows their expiration date, you are not a number or statistic-you remain Chris, continue to be who you are enjoying the experience.
Hello Frenchy Bud - welcome.....my story is comprehensive but boring....what is important to note, as you get feedback from many guys, is that every case is different, and what one doc recommends may not match or help someone else....fortunately, lots of ways to treat prostate cancer, with at least 10 different treatments. I was diagnosed in 2008 at age 60, so 70 years old now, Gleason was the typical 7 which is very common and means "average" cancer. Had focused beam radiation called CYBERKNIFE (Google the terms in caps for more info) and it originally reduced PSA to below one. But then PSA crept up to 15 and 20 after 3 years, and so was treated in succession with LUPRON (called ADT hormone treatment) and then CASODEX, and then XTANDI, and ZYTIGA. All worked for a while, but then stopped working. Last month I finished a 6-week treatment with PROVENGE called an immunotherapy treatment. This is often a last, or second to the last treatment. My doc says I should start chemo soon for first time. Right now I have mets to lymph nodes in chest, pelvis, stomach, and mets to bones hip, skull, ribs, back, feet. Because of the recently developed bone mets, just had my first XGEVA injection to help the bones. Been on the ADT/LUPRON injections for about seven years, and it has worked to reduce my testosterone to below five which is very good, Prostate cancer feeds off testosterone. Have also been going to a naturopath doc for 9 months, getting vitamin supplements to improve my immune system, but not sure if it is doing any good. From everything I have read, I would say that the following diet and stuff could be helpful for most people: lots of fruits and vegetables, especially tomatoes, red wine (they should have some of that over where you are), pomegranet juice, sleep, exercise, support network like this one, and try to enjoy your current good health and activities. I still work part time to bring in more money for a young relative who is a single mom and needs money, but otherwise I am still active playing golf weekly, driving my car, doing volunteer work. I console myself by realizing I have had a very good life with many family and friends, have visited France about 4 times (favorite place is the Lourve museum) and finally, I truly feel and believe I am spiritually, emotionally, financially, and legally ready for whatever might happen to me. No worries. Good luck to all.
Hello, Here is how I found the Gay site. At the top of the page is "My Communities". If you can not find My Communities click the round smiley face. Click that then click "+Browse Communities". Go down past all the Popular Communities to the alphabetical section called "All Communities". Find the P section, then click "Prostate Cancer And Gay Men". There is also a site for "Gay/Bisexual Men".
I am surviving PCa for 6 years now, am 72 years old, used radiation (72) and Lupron shot every 3 months. The main side effect of no more sex drive was hard at first, but I use other things like massages doing loving things instead of "getting off". My PSA is 0.00 for 6 years which means my metastatic cancer can not start growing tumors all over my body. Lupron stops the cell division in normal and cancerous prostate cells, because the cells require androgens to subdivide. If you want to know more let me know. My life is pretty normal and I can do most things. I am happier because I'm out to get laid all the time! For me it is a good trade off. So listen to your doctors and enjoy life.
Hi Chris, welcome. We're sorry you had to join us but we are glad you found us. I was diagnosed at 50 and thought I was young. I agree with what most here have said, when you are young and otherwise healthy, there are more aggressive treatments that your body will tolerate so you'll have a good chance of beating this damn thing. Most, if not all of us are also Stage 4, with varying degrees of mets. You'll find multiple people on here who are currently undergoing a treatment you are considering. You'll get excellent advice. No one knows exactly what you are going through, and how you are dealing with it, but you can bet that most of us go through the same stuff so please don't be afraid to ask questions. You'll get sick of hearing "live for today" but you know, it's pretty good advice. Focus on things that bring you joy. Spend time on this site, read the posts, search for keywords. Many of our brethren are pretty inspirational. We just need to live long enough until the next treatment. They are going to find a cure for this thing, I'm confident of that. Stick with us until then.
Some news. As i have explained i am following the clinical test named "Getu Peace 1" developed by the Gustave Roussy institute.
I received :
- 2 hormone therapy included Zytiga
- Chemotherapy
- Radiotherapy
When my cancer was diagnosed my PSA rate was : 724 ng, today 13 ng seemingly my body is receptive.
I have lost a great part of my hair and my beard. I lost likewise some weight.
I will finished my chemotherapy at the beginning of march then i will start after 8 weeks the radiotherapy of my prostate.
Because of chemo it is really hard for my when the night comes to sleep, i have tried many kind of medicine and they are not effective. So i have decided to use weed and now it is working.
About private life, it is not easy because of the hormone therapy with is a chemical castration. it is really a question of willingness. Sometimes it is walking sometimes no.
To conclude i have heard about a Canadian treatment (radium 223), for really advanced cancer of the prostate. I have took contact with the professor leading this program and he told me it wasn't for me and to trust in the clinical essay i am following.
I wish you for this new year the best to everyone hoping we will win against this shit.
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They are going to find a cure for this thing, I'm confident of that. Stick with us until then.
"Advanced Prostate Cancer"
Advanced prostate cancer
Advanced prostate cancer
Stage 4 advanced prostate cancer
