New to site- need advice

[Julson]

New to site- need advice. Husband RP 2005, Gleason 9. TRiple Hormone Therapy 2008, Zytiga 2012, Provenge 2016, Enzalutamide and now on Daralutamide. PSA still rising, 55. Axumin 7/19, diffuse sclerotic foci in osseous structures, Bone scan,Nov., focus of uptake iliac bone. Change uncertain.

Genetic testing last week. No mutations expected. Oncologist suggesting Clinical Trial, chemo, or Radium 223 when husband has symptoms. Husband had been patient of Dr. Meyers, then a urologist, and recently has met with oncologists at cancer center.

Rising PSA scares me since husband’s PSA was only 4.5 at diagnosis and cancer was out of prostate. I have followed this site for sometime and value the advice given. Thanks!

[Dachshundlove]

Hi Julson

I’ve heard many good stories from the Snuffy Meyers patients and your’s is yet another good one!

What a long road with PC, for both of you.

Based on the history you shared, it doesn’t look like your husband has ever done Chemo. That may be what is suggested next. Chemo can re-sensitize people to drugs like Zytiga and Xtandi.

I’m glad your husband is not in pain. I hope you guys find the next treatments to be manageable. Prostate cancer, for the lucky ones (people who respond to treatment and maintain a quality of life) is a long marathon...

Peace to you.

[Julson in reply to Dachshundlove]

Thanks for your encouraging words. We felt in such good hands with Dr. Snuffy Meyers. My husband feels he saved his life and I appreciated all his knowledge and research. Starting Zytiga in 2012 was the magic bullet. We will certainly consider your suggestions. Just communicating with someone who understands the daily struggles is comforting.

[Tall_Allen]

Does he have a medical problem that precludes docetaxel?

[Julson in reply to Tall_Allen]

No, we know of no reason he could not have Docetaxel. The oncologist suggested a clinical trial first but there are so many to consider. She suggested the CART PSMA to start at Jefferson, but I have talked to them and doubt JH will still have a tissue sample. She also suggested a trial to start at Fox Chase. I think the drug was rucaparib.

I am concerned his cancer is progressing while we do nothing. Your advice is appreciated.

[Tall_Allen in reply to Julson]

I think a taxane is a good next step. It has the advantage of being brief - after 15 weeks he can move onto something else. PARP inhibitors only seem to be effective when there is a BRCA mutation (germline or somatic). For somatic genomics, you want a recent biopsy -- things change over time.

[Julson in reply to Tall_Allen]

Your explanation of why my husband does not qualify for the clinical trials is what I need to understand. Your thorough knowledge of PC helps me and so many others. We meet with the oncologist this week and will discuss a taxable treatment. Thanks so much for your advice.

[Tall_Allen in reply to Julson]

I'm not sure which clinical trials you mean. Every clinical trial lists its inclusion and exclusion criteria.

[Julson in reply to Tall_Allen]

Trial at Fox Chase is NCT03840200-Ipatasertib with Rucaparib, and I think he fits the criteria. Trial at Jefferson is NCT04227275 with CART-PSMA. Thanks for the tip about PARP inhibitors being ineffective without BRCA mutation. This is the one where we have no tissue sample , so he would not qualify. I am finding it overwhelming to research clinical trials.

A taxane will definitely be in the conversation with the oncologist.

[Tall_Allen in reply to Julson]

Probably a good idea to ask for a tumor biopsy with staining for PSMA, PSA, androgen receptor, SSTR2, and neuroendocrine markers.

[Julson in reply to Tall_Allen]

My husband had a prostatectomy. I don’t know of any other tumors. Your knowledge is amazing!!

[Tall_Allen in reply to Julson]

Metastases are tumors.

[Julson in reply to Tall_Allen]

I have a lot to learn. Thank you!

[MateoBeach in reply to Julson]

Agree with T_A yet again. Just want to add the consideration that many clinical trials may include a requirement for prior chemo with a taxane, as they often test promising therapies in the more advanced setting first. But this is a side issue. There could be substantial direct benefit from the chemo in spite of the short term "inconvenience".

[Julson in reply to MateoBeach]

Somehow he has escaped chemo until now. He needs a substantial direct benefit, so chemo will be a serious consideration. It is on the list of possible treatments the oncologist gave us. Thanks for your input.

[immunity1]

My story is very similar since Dx in 2010 (see profile) and I am currently on docetaxel and will continue while PC markers are decreasing. All the best. =R

[Julson in reply to immunity1]

Another positive reply for docetaxel. Thanks so much.

[Julson]

Great to hear your PC markers are decreasing and encouragement for us in our decisions. Thank you and all the best to you. I am blown away by this site!

[Judymin]

My husband also was snuffy patient. We miss him. Same basic treatment diagnosed at age 53 psa 22 Gleason 9. Radiation no surgery. Was to have provenge but developed blood clot so it was ruled out. Now on chemotherapy 6 sessions but will need more psa going down but not undetectable. Not sure what is next. Other than hair loss he is doing well. Best of luck to you

[Julson]

We, too, miss Dr. Meyers and our trips to VA. Good to hear your husband is doing well on chemo and his count is going down. I appreciate your response and wish you the best. Chemo seems to be in our near future.