After some advice please; my husband was diagnosed last November with a PSA of 167 and Gleason 9. Bone scan and CT showed T3a and one solitary pelvic lymph node.
We are in the UK and he's been offered chemo (currently completed 3 cycles) and afterwards they'll consider pelvic radiotherapy.
The oncologist stated on last visit PSA is 0.2 and plan is hopefully to have a short break after chemo before disease progression and then they'll consider something else; either another chemo or Zytiga. I don't like this plan!! I'd rather prevent the progression than wait for it.
So I wonder if anyone has any thoughts on when is best to add Zytiga bearing in mind we'll have to pay to go private which will mean thousands every month and the NHS won't allow some private some NHS so is it best to wait until he finishes chemo and radiotherapy on the NHS and then get Zytiga privately?
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Fdccs
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What kind of radiotherapy?- Whole pelvic external beam with a brachytherapy boost to the prostate? Has he been taking hormone therapy? has he had PSA progression while on hormone therapy?
Hi, he is currently on Zoladex and that's taken PSA from 167 to 0.2. Chemo seems to be keeping it there, not lower or higher so far.
Radiotherapy is external beam. I just really don't like the oncologists plan of waiting for progression and I know no gaurantees but all the positive stories I read are from early Zytiga
What might help in your decision making is to have genetic testing. I had a simple low cost saliva test from Color Genomics, which resulted in my diagnosis of having BRCA2. I am now on a PARP inhibitor Olaparib as a result, after having been on Zytiga for just 6 months. PSA now down to 0.13. Another more comprehensive and potentially expensive genetic test is from Foundation Medicine, which uses tissue sample
You are entirely correct that studies with early Zytiga show that, when coupled early with ADT, this combination significantly extends lives. There is very strong advocacy in the UK, but as you know, the NHS has not adopted this regimen.
(Unfortunately?) my experience supports the NHS (and most American insurance companies). My bone tumor burden was relatively high (+10 confirmed bone mets and many shadows, and 2 pelvic region lymph nodes involved). I was placed on standard ADT and underwent 6 rounds of chemo with external beam therapy to my spinal tumors. My PSA nadir after this time was 0.02.
So by all accounts, this standard treatment was "working." I was just put on Zytiga this February after steady, but small, PSA increases over the previous year that raised my PSA to 1.24. My last PSA was 0.74.
I would ask your oncologist why your husband does not fit the profile for early Zytiga addition. I would also press him/her on when it WOULD be considered for addition - remember the PSA number is not important, but the PSA "velocity" is (how rapidly the PSA is increasing as a proportion, e.g., "doubling" or "tripling").
As an aside, Zytiga has amplified my fatigue by a significant amount. I doubt that I personally would have been able to be on ADT and Zytiga during chemo and radiation.
Keep on 'em, Fdccs! I would also ask about Tall_Allen's suggestion about brachytherapy boost if they recommend pelvic radiotherapy! Good luck! - Joe M.
Sure... Terms like PSA “velocity” or “kinetics” or “doubling time” refer to how PSA values are seen to change over time. As with many metrics in our world, it is a possible (note the term “possible”) indicator of changes in our cancer’s activity. In my instance, although my PSA was very low a year ago, I could chart its rise and even eventually put an equation to it (I’m an environmental engineer, so.... naturally). In any case, I knew that if the trend continued, I would need to discuss new treatment options. I really didn’t care about the total PSA, but was concerned with how fast it was changing.
You’ll find men in this forum that may have relatively concerning PSA levels on ADT (say, >4), but their PSA kinetics are very stable over time, which often indicates some sort of condition stability. It is definitely a topic to discuss with your docs.
That’s the beauty and the curse, Fdccs - everybody’s experience with their lowest point (“nadir”) is different. Looking around this forum, some men have been stable for years. I took about 8 months to reach my nadir, was at nadir for another 8, and then the rise started.
I am on Zytiga free with NHS why will you have to pay for this? It seems to have controlled my PSA alongside Zoladex I am advanced PCA with metastic site in pelvic bone.
That is strange are you on a trial? Otherwise we can get Zytiga but have to wait for progression after chemo before they'll consider it but I would like it now for my husband
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