I am currently on 1000mg aberaterone and 5mg steroid daily. Lupron every six months. Diagnosed in January 2024. Gleson 4+5=9. Metastatic. L2 and T2 bones mets treated with EBRT. PSA was 466 in February when I started triplet therapy. Have had a great response with PSA now at <.10. Tried docetaxel chemo two weeks ago and lasted 7cc/2mins. Horrible reaction that docs say was not allergic given my vitals and they don't know what it was. I guess <5% have a similar reaction. Taxanes are out for now. So, standing on two legs of the triplet therapy stool, with good results!
I hear several on these threads mention a drug holiday, or actually stopping therapy. What are the circumstances of being able to do that? Is that in the cards for me one day? MO said initially I will be on these meds 'forever', which we know will change in time.
Just curious as to how one gets to a point where they can stop taking this stuff?
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Saw stars and then went into what I would think was anaphylactic shock, but docs said it wasn't. Turned bright red head to toe, profuse sweating, chest tightness/difficulty breathing, could not lift arms or legs. Entered a bit of a stupor. Never lost consciousness, but felt I would. Flushed the IV and administered hydrocortisone and Benadryl. Severe reaction took probably 20 minutes to subside. I walked out after 2 hours but pretty banged up as a result, probably due to all the meds still in my system. Took three days to feel 'normal'.
They have decided that since vitals did not indicate an allergic reaction they do not know what happened. Possibly vasovagal. Possibly vascular (per my retired M.D. brother). So, I was willing to try again with pretreat guardrails but both teams (local MO and MO at NIH conducting trial) advised against it. They don't know what it was and thus don't know how to pretreat and didn't want to put me through that again. I'm ok with it. Saving chemo for another day.
Thanks for sharing the background 4T on your Docetaxel infusion reaction. It must have been terrifying! Or at least I would have found it that way. Thank heaven it seems you got through it.
Your report got me thinking because I'm also doing triplet and finished the chemo Docetaxel a year and a half ago successfully. It's really great if you can do the chemo!
Very important that apparently you did not have anaphylactic shock. I was interested in your incident and reviewed some of the literature. I had done reading previously during my own infusions.
During one of my six infusions it was clear in retrospect that that one particular administration had resulted in leakage of the Docetaxel outside of the blood vessel in my arm. It was very painful and I had long wiggly scar that is mostly gone now.
We know that there are so many things that have to be perfectly managed in a medical setting and it's very hard to be perfect all the time. I wonder if it is possible that the infusion was somehow mishandled?
Maybe not at the injection site but there are other things such as timely and correct preparation etc. I think about this in part because of a personal experience related to ADT injections. I have Degarelix ADT injections every 30 days. They must be done absolutely correctly.
My experience of many ADT injections is that there is a lot of inconsistency. And sometimes much more pain than other times. And I switched services because of this and the experiences now totally different and better and consistent.
Forgive me for asking this, but to be offered triplet therapy is fantastic. And if a certain percentage of patients can't handle it not because of any own reactions but because of administration errors, then that would be worth figuring out.
From a brief check today I did not find any literature on this topic. There were two cases where erroneously high dosages resulted in serious problems; in both cases there was full recovery. But there doesn't seem to be documentation that this is an ongoing issue.
I do not expect you to say that there's anything to this but I thought I'd ask anyway.
And a big success ongoing for the best results from your therapy program!
I have no reason to think the infusion was mishandled at all. The NIH nurse was fantastic and I messaged her after I was home on how professional and caring she was. No problem in your asking as we are all here to explore, learn and most importantly to share.
Diagnosed early 2022 Gleason 9, BRCA2, metastatic enough so no surgery or radiation indicated then (did have RO consult), PSA went after a few Docetaxel sessions from starting 6.5 down to now <0.01. Started A-Dream clinical trial (drug holiday from my Eligard/Zytiga/prednisone) early Jan 2024 and will be scanned (CT & bone scan as part of trial) and labs in June with MO visit July 2nd. Why did I sign up? MO (and myself) was all for it essentially for a few reasons. One is the degradation to our organs, etc, that the ADT drugs (including prednisone) can do to our "innards". Also, some reasonable studies seem to suggest overall survival not much different (a few months) between continuous vs intermittent ADT. Another issue is QOL although if my testosterone doesn't kick back in I'm questioning this aspect. Life very tolerable either way. One big concern...at some point I want another PSMA scan as it has been almost a year since last one. Peace of mind. That's me in a nutshell. Active 71 yr old 3 times a week golfer, try to get to the gym occasionally when not in golf season, and being pushed by a knowledgeable buddy to get a darn 2nd RO opinion up at Mayo as my metastatic situation seems "calmer" now after my triplet therapy compared to first scans. #KFG
From all available scans, the metastatic sites that showed on first scans over 2 yrs ago appear to be "calm" when being scanned now. Will wait on new scan results in June but if they also show no evidence of new disease and in general my insides appear calm, I may want to discuss gain whether any targeted radiation (lymph nodes near prostate, etc) might be of potential value. I've never had surgery nor any radiation therapy. I know Dr Kwon at Mayo appears to be more aggressive in his approach (compared to some other MO's) and while deep down I'm not convinced that RT might be of help, I still might like to hear another opinion about my situation. Would radiating the mothership be of any potential value at this point? Questions like this. I'm not rabid about "seeking a cure" but rather want to do my due diligence. I love my MO, he's grounded in science (I certainly believe), but also might be "conservative" which I believe Dr Kwon is not. Hope this makes sense.
I didn't rush myself with radiation. If you are not curable than I would radiate myself as needed. You would delay side effects. There is no point to radiate anything if your scans are clear. Certainly ask for second opinion. We are not experts here but you should still have a nice warm feeling about what you are doing.
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