Hello everyone. I am reaching out for some advice and info so anything you can offer would be wonderful! My dear friend was diagnosed with Stage 4 Metastatic Prostate Cancer roughly 1 year ago. Original PSA was 1800 with 2 rounds of chemo and the hormone shot every 3 months his psa averaged between 4 and 12... until recently... it was 158 which resulted in a bone scan which at that time it was discovered he developed many kther lesions all over his body however the worst was the shoulder and femurs. He is scheduled for surgery on both femurs for rods to be placed next week. He now continuesthe 3 month shot but also takes a hormone pill daily and gets blood work every 2 weeks. Im scared and aggregated because there is no time limit to give and he is so young and healthy other than this terrible monster growing all over. I guess what I am looking for are success stories. Words of encouragement... is it to late? The doctors say in 3 months they will reevaluate to see if we need chemo or radiation... I am tired and scared... can someone give me something please?
Stage 4 advanced prostate cancer - Advanced Prostate...
Stage 4 advanced prostate cancer
A few things to discuss with his doctors. If he is going to have bone surgery in areas affected by the cancer they should get a biopsy and do a genetic study to determine if there are mutations which could be treated with specific drugs.
If he is not taking Zytiga and he does not have visceral metastases he could be treated with Xofigo, a radioactive substance specific to treat bone mestastases. At the same time he coud get a vaccine called Provenge which could help to prolong survival.
There are other possible treatments with radiopharmaceuticals, Lu 177 PSMA and Ac 225 PSMA wich are systemic therapies and they can kill cancer cells in the bones and other tissues . There clincal trials in the USA for these treatments or he can get treated in Germany or in Australia. if he can afford the cost of the treatments.
clinicaltrials.gov/ct2/resu...
clinicaltrials.gov/ct2/resu...
He just starter zytiga last week with steroids. They are placing rods on his femurs to prevent them from breaking. The doc said this is not uncommon and this is the best course of treatment. Good news is we didnt get sent home to put affairs in order. Any recommendation on special diets, foods, etc that could help with fighting or bine strength? We are going to see if vitamin d or calcium is needed as it may not be. We are ready for the fight but the fear of the unknown is terrifying!
There are lots of different opinions on diet for prostate cancer. The one I am trying to follow is a mostly plant based low sugar and carbohydrate diet (high in Polyphenols) organic as much as possible, mostly nuts, seeds and pulses for protein but also fish, especially fish high in omega 3.
Thank you for this information. After speaking with hos ortho team they said the purpose of this surgery is to improve quality of life and reduce the risk of a fracture. They stated this is by no means a surgery that is needed to extend life etc. It is more so to assist the femur itself. His oncology team is stating thw current treatment he is on is the best they would offer in terms of aggressive therapy. I trust them however after reading all of these replies and learning SO MUCH this treatment, while may be aggressive and their recommendations I feelas if we should get another opionion and not put all of our eggs in one basket here. He is very young to have this and there is not much data forhis age but one thing I have learned is while heis young and healthy this cancer is going haywire and wants to eat up every bit of him as it can. Good news is it has not attacked lymph nodes or the organs. I wont minimize his diagnosis because its aggressive but I find some sort of comfort in that assessment. What we need to do now is get answers, other opinions from the best. We are working to get him into MSK in NYC and Roswell in Buffalo just to see if there is another recommendation or trial out there. One question I want to ask is what foods or items should he stay away from? Does this cancer thrive off any particular foods, ingreds? Should we up something else? We are working to get him in with a nutritionist to put a plan together but id love to have my life of questions based on everyone's responses. Thank you so much!
Bone surgery is unusual with prostate cancer - radiation usually lessens the bone pain and prevents fractures. I wonder if the bone mets are lytic, indicating neuroendocrine PC?
How old is your friend ? The leg surgery is very unusual and I'm thinking his insurance company might refuse to pay for it. Also, recovering from the bone surgery will be a big hit to his quality of life and reduce his mobility considerably.. As TA pointed out, there are other means to reduce the fracture risk..Where is he being treated ?
Wilmont Cancer Center and he is 43
Most of the men in this situation are 60-70 years old..But at 43, they will take a completely different treatment approach..Best of luck to you both..For a second opinion, you might want to go into NYC and consult with the experts at MSK , one of the top cancer treatment centers...
That is exactly what they said to us. They say there is not really any stats data on a 43 year old as the stats are for men in their 70s. Pro for us is he is strong and healthy to fight. The biggest fear and battle is one min yayyy PSA is done and then the next min wait the lurpon didnt attack it the way we anticipated... phase two... lupron and that z something pill. Ortho recommends the rods in the femurs to lessen pain and avoid fractures. This is the most aggressive way they want to treat it but monitor very closely every 2 weeks. I know there are plenty of other options and treatments its just frustrating.... cant onejust do the trick for everyone!! I just pray that god is driving this bus to victory and not to him. Its been one hell of a road... he went in for back pain and walked out with stage 4 cancer... no other symptoms at all!! Its insaine...
how old is yourf friend? how come his psa was so high and thats not good. when i got my routine test after 55 i found out 10 years ago my psa had gotten to 5.7 then a biopsy and found 7 out of 12 was cancerous. then i got my first lupron/eliguard shot after the month period my psa climbed to 8 Gleason score was 10 and since i didn't want invasive surgery i went 28 days on radiation and the rest is trial and error by drugs until recently where i had the PROVENGE treatment. been hard getting a wholed of zytiga and now i have some for who knows????.
They don’t test men for PSA at 40 anymore. They don’t even want to test 50 year olds. It seems we men cannot be trusted to make treatment decisions on our own anymore so they quit screening.
will as for testing for psa i have no idea where u live but its very backward area. once your psa gets 500-600 its all down hill. my doc must have been old school because a small blood test solves the problem if there is. remember men most are stupid they don't care or figure its not me. in this culture,area,or age one must be always pro health.
charlie
Hi there, my husband had some success for awhile with Radium 223. You may want to check that out. It was a trial only so he was only able to get 6 treatments.
Jail Jam,
Good that he’s is young and strong as this disease is tough but many of us on this site have been fighting the good fight for a number of years with good quality of life.
There are clinical trials that you should inquire about to see if he can get in. I’m currently in a trial for LU177 PSMA and having good results. This treatment is available in Germany and Australia but can be costly. Get an oncologist that is aggressive at center that specializes in PC.
Be a strong patient advocate and don’t settle for standard of care.
its not even offered in the town i live in and who knows what the cost and prognosesis.
charlie
Charles,
You are correct that smaller or rual areas will not have a lot of the newer treatments, I know I live 20 miles to the nearest town but I drive 200 miles each way to the Mayo for treatment. Not fun or cheap but I figure my life depends on getting good treatment and so I drive.
I’m 5 years in stage four and scans look like I’m a Christmas tree. I was able to get in a trial for LU177 which seems to be working for now. No treatment is a cure yet but I stay positive, search for new treatments that may not be available in the US.
I’ve blown through most standard treatments so looking for new options is one of the few things I can do.
Hi JaimJam
All I can offer you is a fragment of hope. Your friends cancer is bad in the way it is attacking his bones. His age and high PSA is troubling. If I were in his shoes I would opt for removal of the testicles. It would permanently stop the production of testosterone. Did you mention if he started a pill such as casadex or zoladex prior to Lupron. Lupron can cause a testosterone flare that causes the cancer to go nuts for a short time. Now..... about that hope. I was 42 years old. My PSA was 3216.29 I had Metastasis in my Lungs, my Pelvic Bone, and My Lymphatic system. I also had Metastasis in my brain. I had a tumor growing out of the prostate and into my bladder. I was given a year to live. I will be 55 years old December 2nd. I am currently not on treatment as of 2 days ago. My PSA is currently<0.01
I have faith in God as I understand him. My Mantra is Psalms 103 bs. 2-3 I am not cured. I am still terminal. We all are. Go to the best Prostate Cancer Oncologist you can find. Don’t settle for second best. God bless, Todd
hey read about loosing ones balls it makes no difference its only temporary relief.
It is just as temporary as Lupron or ADT. Simply no shots or pills. Same effect. Studies have shown that men do better with an orchiectomy than ADT
To echo Fairwind:
For a second opinion, you might want to go into NYC and consult with the experts at MSK , one of the top cancer treatment centers...
If you can do this ASAP!!! You're a great friend.
Good Luck, Good Health and Good Humor.
j-o-h-n Wednesday 11/28/2018 6:29 PM EST
what is ADT?
I was faced with metastatic prostate cancer in 2004 at age 57. I opted fir six months of chemotherapy and hormone therapy. In 2003, I had Brachytherapy and IMRT which failed within a year.
My best advice, considering that metastatic cells spread via the vascular and lymphatic systems, is to kill the little bastards through systemic treatment; which means chemotherapy. The hormone therapy delays spread. With this said, there are a lot of people that disagree. However, I can only point to a consistency of undetectable PSA and clean bone scans that I have experienced; all the while without any treatment or supplements since 2010. Everyone’s mileage is different as well that strength of body and tumor burden. Get to a PCa researching medical oncologist associated with a medical school with research facilities and Pray that he can keep the cancer in check.
GD
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