In late spring of last year I went to my GP doctor to ask about problems urinating. He diagnosed me with prostititus and chalked up my excessive urination to my recent diabetes diagnosis. He prescribe some medications for the prostititus and told me not to worry. Since I was only 48 he did consider me at risk for prostate cancer so he didn't order a PSA test
A few months later, with no relief for my symptoms he finally did a PSA test and refereed me to a urologists. My first PSA came back in the fall of 2016 as a 36. My urologist scheduled me for a biopsy in January of this year. It came back 12 for 12 positive for cancer. We decided on a treatment path of radiation therapy along with Androgen Deprivation Therapy, Lupron.
My next PSA test in February came back as a 49 and my Gleason was 5/5 for a 10. My urologist recommended a TURP procedure to open up my prostate so I could urinate without the extreme pain I have had for the last 6+ months.
I had the TURP done in late Februrary and that was followed up by another procedure to place seed in my prostate for radiation therapy. After the seed were implanted I started 9 weeks of radiation therapy in late April of this year, finishing in June.
My PSA test 30 day post radiation was very good, undetectable. I was referred to a medical oncologist to discuss further treatments. After reviewing my chart he said I was the perfect candidate to do Taxotere chemotherapy, until he noticed I have peripheral neuropathy in my feet.
We discussed it and he informed me that the chemo would probably exacerbate my neuropathy and could leave me unable to walk.
That is where I am today, 49 years old, lost on how to proceed, scared shirtless, and loosing hope.
Written by
Rollo67
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Hi Rollo, Welcome to the club, You caught it earlier than I did, I was diagnosed at age 49 with also Gleason 10, but I had a psa of 148, I never had early chemo, as that was in 2006 and it was not standard of care then. The excellent news is that you were able to get that psa undetectable, I never did, but this bodes well for how you will do . I am assuming you are still on Lupron, and what else? You have lots of new drugs that work great in the last 10 years and there is lots new coming out all the time. Do Not lose hope, stay focused ,learn all you can, Very likely you have many years, I am 11 years out.I wish you the best, we are all here for you.
I join Dan in saying welcome, and it is great news your PSA is undetectable. PCa is a war and at least you have won one battle. All the best, and to Dan - congrats on your' 11 years winning many battles. Gives us all hope.
Right now I am only on Lupron, and likely will for the foreseeable future. I am supposed to meet with my oncologist to discuss another ADT treatment that shows some promise. Cant remember its name, luckily for me my wife is a Nurse(RN) and she can translate for me.
The hardest thing for me right now is dealing with the side effects of the Lupron. The hot flashes have not been to bad with this second shot, I do take effexor for those. The depression and fatigue are really hitting me hard with this shot though.
Hi dan59, It is interesting to know from past 11 yrs you have managed well. What kind of treatment y have followed? Please let me know as I am aged 55 and in advanced stage with Gleason 8. Mets in my skeletal and pelvic lymph nodes. Currently I am treated with Lipton and bicultamide. Completed 10 cycles of chemo. Initial psa was 23 and now 0.25.
I had no local therapy as I was inoperable stage 4, I think it was mostly prayers! I was on continuous zolodex for about 7 years til my t would not recover, I did high dose casodex (150) for a short time till it made my liver numbers go through the roof, Then switched to Climera Estradiol patch with zolodex 6 X .1mg patch per week with zolodex, I have been on continuous dutasteride since day one and still am, Climera gave me a good response, and did again when I rechallenged with it. Then I used a different antiandrogen caled nilandrom, which did not cause liver numbers to rise, I got time out of High dose ketoconazole (befor zytiga was approved) then I switched to zytiga, and when psa went up I added xtandi, almost 11 years out I did 12 rounds of docetaxol, Currently I am trying some out of the box radiation to lymph massses and spots in bone as well as radiating the prostate, next I will try to get rad223(xofigo) and then on to Cabitaxel. I wish you the best!
Rollo, A fan helps a lot with hot flashes, the Effexor should too, I was prescribed that for hot flashes long ago, though I do not think I took it, It is actually a anti depressant I believe, for me just having the hot flashes meant that the adt was working. You are in a very good group here, lots of very informed patients willing to help all the time. Everybody is happy to do so. For fatigue try to stay active, walk every day, do something everyday, Do things that will take your mind off of this cancer. Likely You will do well for a long time, The other adt is likely Zytiga. Learn all you can, others will respond to this as well. I would like to leave a quote from Stephen Jay Gould on the benefit of a Positive attitude "Attitude clearly matters in fighting cancer. We don't know why (from my old-style materialistic perspective, I suspect that mental states feed back upon the immune system). But match people with the same cancer for age, class, health, socioeconomic status, and, in general, those with positive attitudes, with a strong will and purpose for living, with commitment to struggle, with an active response to aiding their own treatment and not just a passive acceptance of anything doctors say, tend to live longer." phoenix5.org/articles/Gould...
Do not loose hope! We are all here for you. Did you have any scans yet? If not I would strongly recommend them, if for no other reason than to get some t= zero scans.
There were some exciting papers published last June that offer hope to those who do not want chemo. One of them, the Stampede trial, found amazing results when you use Lupron with Zytiga (both hormonal therapies). I had been on Lupron for about a year when my MO added Zytiga to my current treatment about three weeks ago. A link to this is listed below. Please note that my medical oncologist added Zytiga even though I was already on Lupron for a year.
Sorry you have to be in this club, but you're in good company here at least.
It sounds like you've responded really well to treatments and just have to stay the current course. As long as your PSA stays low and you don't have disease progression you shouldn't have to do anything different. You could go quite a long time on just Lupron before you have to do anything else. Or you could add Zytiga since that has recently proven to add to life expectancy when done early. I agree that it would also be good to do chemo, but the neuropathy is a big concern. I'm getting it now after cycle 5 and didn't have it to start with. But mine is mild and I do expect it to go away. How bad is your neuropathy? Has it been graded? When you do chemo they grade your neuropathy and depending on what grade it is, they may reduce the dose or if bad enough, stop the chemo entirely.
I would also recommend getting some base line imagining done for future reference purposes. PSA alone doesn't tell the whole story as far as diseases progression goes so it's good to have a starting point for comparison purposes.
Good luck with your treatment and keep us posted. We are here to help and support all of our prostate cancer brothers and sisters.
Please try timed release alpha lipoic acid for your neuropathy. Very successful experience with this product. It is a fairly inexpensive supplement which helps this condition.
My doctor said we had to work hard to get me 5 years; that was 19 years ago. I agree with many of the previous comments. Read all you can, and have a prostate cancer MO, and you should be find. New drugs are being developed, and there are couple of drugs available now when, and if you need them. You have future options. The more informed you become, the better you will, with your doctors, be able manage your disease for many years into the future
Being diagnosed for high grade PCa of GS : 10 at a relatively young age of 48 is obviously worrisome at the start. But certainly you are not at all lost so long as you are with us. Your initial treatments have proved to be of great success and I believe from their onward you should be able to manage your decease well if you make your choices intelligently. You have already gathered some very useful guidelines as regards treatments and prognosis. Look for excellent hospitals and excellent oncologists who specialize in treating PCa right from the start. Do your own research, read and learn as much as possible. Be the Manager of your own case and maintain a positive attitude at all times. Pay attention to the Trials STAMPEDE, CHAARTED and LATITUDE which were concluded recently when you discuss treatment options with your doctors.
Sorry to see you here... but you've come to the right place for help...
I've been taking 1 tablet of prescribed Neurontin/Gabapentin 600mg for my peripheral neuropathy twice a day (morning and evening) for many years and it's been a miracle for me.
I am currently taking 900Mg Gab 3 times a day, with very little affect. Neurologist and I are going to try Lyrica again. If that doesnt work, then it is just pain management.
Ok, met with my Neurologist today to discuss treatment options and affects of Chemo on my Neuropathy. She informed me that the type of Neuropathy I have should not be affected by the Chemo so I am cleared to go that way if I choose.
UPDATE: Met with my Neurologist last week and she said the type of Neuropathy that I have should not be affected by doing Chemo. So this week I met with my Oncologist and we agreed to move ahead with Taxotere Chemotherapy, 6 treatments over 18 weeks. I start next Tuesday. He is also going to be adding Zytiga to my regiment.
I want to thank you all for the great information and support. Feeling pretty positive and motivated. I told some friends I was going to have my barber give me a Mohawk before my hair all falls out, now they are going to do the same in support of me. Having a ChemoHawk party this Sunday. Ill try and post pics if I can.
Welcome to the club, Rollo. Sorry you have to join us, but you are among some very supportive and caring people who share experiences similar to yours. As I have said before, we are all riding the same train, but in different cars since each of our experiences is unique.
The great news is that your PSA is undetectable, and could stay that way for many years.
I was Stage 4 at diagnosis 3 years ago. Lupron and bicalutamide has kept my PSA undetectable since then, and the side effects have been tolerable. At that time, docetaxel was not an option for hormone sensitive PCa patients, but I recently added it, and have completed 5 of 6 cycles. There are a lot of other treatment options out there that weren’t available 3 years ago, and more on the way. Keep the faith,! Best wishes to you as you continue your journey. You will find plenty of support here.
Supp, Rollo? Just a few comments to add to all the good friends helping you out here. Lots of good advice. Especially prayer, hope and good attitude. After 22 years of cancer fighting those three items are not only crucial but effective , cost free and under your control. Read my post under POKERAGAIN. I was a professional poker player, thus my username. I would suggest a bit more info to narrow down the advice of our helpful and caring brothers on this site. For instance. Do you have insurance? Are you working, if so, what do you do? Are some or many of the suggestions financially impossible for you? Just to narrow down the suggestions . I was fortunate enough to be able to have cost free treatment from the VA. Before I went to the VA I purchased my Lupron from Canada, Half the cost as U.S. My daughter is a nurse who administered it. Another option I did was have a Lupron capsule implanted in my upper arm at the VA. It self administered for a year. My primary doctor asked me what that was in my arm. I told him I was abducted by aliens and they're tracking me. You should've seen the look on his face. Don't hesitate to get a second or even a third opinion, if that is feasible. Stay tough, hang in there and if the Grimm reaper shows up at your door, smile and tell him to go f--k himself you got a life to live.
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