The last reading a month ago has shattered my illusion I had this under control. So as of now looking to do more research and look for options on where to go from here.
Any thoughts, suggestions, opportunities or words of encouragement are greatly appreciated. For those of you further along the path I am more than willing to get into the details of alternatives I have tried so far.
Mike
Written by
spikem
To view profiles and participate in discussions please or .
Sorry to hear about the evolution of your PSA. Most of us had been in the same situation several times. Do not discourage since there are many avenue of treatment for your condition.
Perhaps the first thing is to repeat the PSA and see if it consistently above 0.2 . If it is , proabably the first line of treatment is to do Lupron or similar and Casodex with or without Proscar or similar and see what the response is. Eventually Zytiga or any of the new anti androgen could be used.
Something to discuss with your doctor is to do a PET/CT study to to determine if there are visible metastasis instead of the classical bone scan and CT scan which have very low sensitivity.. The only PET/CT which could work with a PSA around 0.3 is the Ga 68 PSMA PET/CT.
If there were metastasis and the cancer were PSMA positive you could qualify, now or in the future for treatment with Lutetium 177 which is a nuclear medicine therapy developed in Europe mainly in Germany and very effective in some patients with metastatic disease.
There are at least 3 clinical trials going on in the USA for castration resistant metastatic prostate cancer.
Please search for prostate cancer and lutetium 177 on clinicaltrials.gov
The first things is to determine if the metastasis are PSMA positive.
A Gallium 68 PSMA PET/CT will identify metastasis is they are PSMA positive with a PSA of 0.2 or more. There is an ongoing study a UCLA and probably in other centers in the USA.
Please search for Gallium 68 and prostate cancer on clinicaltrials.gov
I was treated with Lu 177. My treatment was in 2016. I had multitude of metastasis in the lymph nodes in the pelvis and abdomen . After 1 treatment the metastasis were gone.
The treatment can kills cancer cells castration resistant and hormone sensitive in the bones and in soft tissues. Very well scientifically documented treatment.
If you cancer were hormone sensitive (most probably) you could be a candidate for treatment with vaccines against the cancer.
I was treated with Prostvac in 2007 (I was in the same condition than you at that time) and the vaccine stopped the cancer for 6 years. There are many other vaccines besides Prostvac in clinical trials. Prostvac seems to work only in hormone sensitive cancer and not in castration resistant.
Please search in clinicaltrials.gov for prostate cancer and vaccines and for prostate cancer and prostvac.
Many avenues of treatment in your condition. It has been 11 years since I was in your shoes. Keep the fight.
Thank you for your experience and path's for research. I will note this and bring up with my oncologist. May be back to you for better resources in that area as I do not have a high level of confidence with my current oncologist.
Hey Mike,
How many lymph nodes were removed and how many of them had cancer?
From all I've read, people with two or fewer nodes have about that same prognosis as those without any nodal involvement, so that's good that there were only two.
Raul had some great suggestions. You still have a lot of treatment options open to you, and lots of years left. Keep the faith, and best wishes for keeping the monster in the bag for a long, long time!
Your numbers are very similar to mine. Since your PSA at diagnosis was low you may want to ask if you have a rare form that does not produce PSA. Ask if you have Ductal or Interductal (not the same).
You need scans. At least a bone and CT scan. See if you can get a Auxium PET scan as it is very accurate. It has been approved for use in cancer recurrence. First make sure you insurance company will pay for it. I made one mistake on how it was filled and now owe ~$11,000.
I would recommend you go on the Stampede and Latitude trial treatment. Ask if you can be on Lupron and Zytiga (with prednisone). It has shown tremendous results and is what I am on. If the cancer is refined to the pelvic area you may want to discuss with your radiologist about external radiation. I had 38 rounds after surgery.
Finally please know that you are now part of our family. You have thousands of fellow warriors and caregivers pulling for you! You will never be alone! People like us we have to stick together!
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
PSA results Lupron + Zytiga working beautifully
Updating my husband's journey, hoping it helps others - any words of encouragement are welcome, but please only positive comments 
mCSPC vs mCRPC? Does my MO have it right?
PSA dropping, yet testosterone rising on Lupron/Zytiga??
My 22 month psa after radiation treatment (SBRT) is 1.25. What should my nadir be? Less than 0.5?
