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Posted 7/22/2014 2:09 AM (GMT 0)
My husband has been on 3-month lupron injections for about a year now. Initial PSA was 292, down to 72 after first injection, then 40, then it was 16, 15 in April and today it was 18. His testosterone level was <10. I was concerned in April when it only dropped l point but the Dr was not concerned and said as long as it wasn't going up not to worry. Today it's up and again "don't worry it isn't up that much" Ugh! I feel that his PSA should be closer to zero by this time and since it isn't the Dr should be addressing whatever is keeping it this high. Unfortunately his original Dr has been off on maternity leave the last 2 visits-I think she would be more aggressive. He does have bone mets to the lower spine and pelvic area. Is this why the PSA is staying where it is? I see others on here with bone mets & PSA results near zero. We are getting another opinion with MDAnderson on Aug 4. Feeling frustrated.
Posted 7/22/2014 2:58 AM (GMT 0)
Since he has only recently begun ADT (a year is relatively recent as ADT goes) and has bone mets, he would seem to be a good candidate for Taxotere now. This was discovered only last year from the CHAARTED study. You might want to bring this study to his oncologist's attention and talk to him about whether your husband is a good candidate.

NIH-funded study shows increased survival in men with metastatic prostate cancer who receive chemotherapy when starting hormone therapy

If his Lupron injections are bringing his testosterone low, as it is, it may be that his cancer is feeding on other androgens or making its own. The first thing he can add to his hormone cocktail would be Casodex. Some add Avodart too. If that doesn't work, and his PSA continues to rise, he can try Zytiga or Xtandi.

His bone mets can be treated with single doses of radiation now, or with Xofigo if his PSA continues to rise. Xgeva may delay fractures or other skeletal events.

Let your Onc know if he'd be interested in clinical trials. There are a lot of great new meds in the pipeline. MD Anderson has several clinical trials going.
Posted 7/22/2014 4:03 PM (GMT 0)
Thanks TallAllen for your reply, I did ask the Dr about the taxotere and this study, he said that Charlie isn't a candidate for that option since he has been on Lupron for a year now. I feel better after reading your post & I know we still have options. I was just feeling frustrated and exhausted yesterday. Thanks again.
Posted 7/22/2014 4:55 PM (GMT 0)
The CHAARTED study actually allowed men into the study who had been on ADT for up to 120 days. I think it should be regarded as a proof-of-concept. It seems to me that we have learned that docetaxel extends survival in men with mets who are still hormone sensitive. While I can't prove it, I can't think why it would make a difference if he has been proven to be hormone sensitive for 4 months or for 12 months. But neither can anyone prove that it would not make a difference. The value of docetaxel has been well established for castrate-resistant men. It makes sense then that it would be an effective therapy in the interim between the start of ADT and the start of castrate resistance.

I hope you will bring this up at MD Anderson.

- Allen
Posted 7/23/2014 11:51 PM (GMT 0)
Nell79,

I had a similar experience with my local onco and was also frustrated. My PSA before ADT was 101 and within a few months it got down to a NADIR of 0.2, which was encouraging, as I had seen varying studies about the NADIR value being a prognostic indicator of ADT duration. Some studies referenced a value of <0.2 as being a good indication and other studies said < 0.05 as a desirable number, and then another study showed that a low number was good, as long as you did not get to the low number too fast. Interesting studies, but what would it mean for me.

My ADT was a combined androgen blockade (CAB), having both Lupron and Casodex, so maybe that helped me reach the .2 level, but since I got both from the beginning, I'll never know how the Casodex contributed to the results.

For me, the .2 NADIR didn't mean much, as the very next month it went up to .3 and my onco said it could be just a bump in the measurement. The next month it was up to .8 and my onco said no need to panic, there is no clear trend and remember where it was when you started. Next month up to 1.3 and then he said still no time to panic, but we might start talking about what we could do next.

Because of this forum, I knew better than to accept this kind of rise, and given the apparent aggressiveness of my cancer, I refocused on getting into see Dr Myers. I did get an appointment with Myers, but because it was so many months out, I also started looking at clinical trials.

Started Xtandi w/ Prostvac vaccine trial at NIH (with Myers concurrence), but unfortunately my cancer did not respond to Xtandi and within 3mo's the cancer progressed, with new spots on kidneys and liver. Not all meds will work on all cancer variances, and unfortunately the science of determining which will work ahead of time is not there yet. Pretty much try them, monitor results, hope they work and adjust as necessary. They are making some progress identify various markers to help determine effectiveness, but more work is needed in this area.

I'm now on a docetaxel (chemo) with xl-184 trial at NIH (again supported by Myers). Had my 5th chemo cycle yesterday and you can see from my signature some of the results thus far. I'm hopeful that the combination of these two powerful drugs will beat the beast back for some decent duration, but if not, I have Myers on call to take over. PSA today was down to 12.14, still moving in the right direction, but I will wonder what it means if it does not keep going lower! For some treatments PSA is not a good measure of effectiveness, so Myers and others rely more on scans.

It's really good that you are getting a 2nd opinion from MD Anderson and it will be interesting to see how they want to treat the beast. Please let us know how that consultation goes.

All my best
Posted 7/24/2014 12:56 AM (GMT 0)
adjust-
I think that's a fantastic clinical trial you're on. Do they monitor your mets with periodic bone scans? Any evidence of shrinkage yet? Your PSA regression looks great! How are the SEs?

- Allen
Posted 7/24/2014 2:07 AM (GMT 0)
Thank you for the info Adjust appreciate your reply. I'm looking forward to getting to MDA and see what they think and will definitely post what we learn from them. I have learned so much from this forum. I think one of the most important things I have come to realize is you have to be your own advocate in this journey!
Posted 7/25/2014 12:35 AM (GMT 0)
Allen,

Thanks, I'm pretty hopeful about this trial. I'm getting bone/CT scans every 3 months. After the first 3 months the CT scan showed some decent reduction in Lymph nodes, which was supported by some symptomatic relief of my right leg swelling going down completely. Also saw nice reduction on the Liver, Kidney and Adrenal gland, which were of the most concern. Bone scans were mixed, as some spots appeared to reduce in intensity but the left hip showed some increase (which I had not seen since first bone scan / diagnosis over a year ago). Based upon all of the other positive indicators, they felt this 1st bone scan was not reflective of cancer progression. Will get another look the end of Sept. SE's have been very tolerable and my Quality of Life has improved significantly since beginning this treatment. Don't want to hijack Nell's thread, so I think I'll start a new thread shortly here on HW to share my experiences on this trial.

I do owe you a BIG Thanks. Shortly after I joined the new NIH trial I was seeing a lot of negativity here towards chemo, and even though Myers approved, I started having my doubts about it until I read your opinion concerning chemo in this thread www.healingwell.com/community/default.aspx?f=35&m=3074428. It was just the dose of mental medicine that I needed at the time! I think the latest news concerning early chemo w/HT has since changed the opinions of many. You are very much appreciated!

Nell, exactly! We do need to be our best advocate, respectfully questioning and sometimes challenging the road we are being asked to take.
Posted 7/25/2014 1:46 AM (GMT 0)
adjust - thanks for mentioning that. It really encourages me to keep learning, transmitting, and encouraging patient advocacy. It's a shame that so many put off chemo for PC. I am also an advocate of just the kind of "cocktail" you are getting now. Your early results with chemo+cabozantanib and willingness to participate in a clinical trial will be a huge benefit to many. I look forward to your new thread.

- Allen
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