I had 10 infusions of Doxytaxel. I started reading about the consequences of CDK12 and was concerned that since I have this mutation doxy was not a treatment of choice. After giving time for the PSA to settle I had a test which showed that it doubled in close to 3 months. In preparation for a CT and bone scan to see if there is progression I had blood work done today and figured I might as well have a PSA test as well. My PSA has increased from 9/11/2023 at 9.2 to 10/10/2023 to 19.2 or a doubling time of .9 months To me this suggests that the doxy was ineffective. I previously did ADT then orchiectomy and when PSA began to rise again it was decided that I was castrate resistant.
I have an appointment with Dr Aggerwal at UCSF in a little more than a month and CT and bone scans on the 16th of this month.
Any ideas on what to expect and or learn about in advance of the appointment? I plan to ask why doxy was recommended if I have the CDK12 mutation. CDK12 is a little difficult to understand. There are many types of mutations. I do not have any more details but maybe they do exist.
Needless to say I am not real happy about the current situation.
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spencoid2
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it it your opinion that the quick doubling together with the fact that i have a cdk12 mutation suggests that the 10 cycles of doxy was pretty much a waste? i could have been pursuing treatment that would be potentially more effective. i knew about the cdk 12 for something like 2 years but did not really know the implications and when doxy was suggested i did not remember the cdk nor the implications. i sort of thought that doxy was suggested because it was the logical next step and two MOs agreed on it. I guess i have learned another hard lesson. you can not depend on doctors to understand your specific medical situation and that you need to do pretty much all the research yourself and run it by the pros because they are not going to take the same interest in your particular case that you should.
how do i decide what trials to pursue? i have looked on trials.gov but did not see anything that struck me as appropriate
i see him in about a month should i just pass on trying to find anything myself? this stuff a a bit confusing and a bit distressing too. will see what the scans say in about a week
yes he is on the forefront and specializes in just this narrow region of cancer. i have spoken to him several times and like his style and obvious command of facts etc. any reason to try to accelerate the appointment? it is a month from now. i am starting to get pains in places i never had them before. not debilitating but ???
yes cdk 12 is the only one found yes still under Dr. Aggarwal's care and i feel confident in his plan. he probably knows more about this than anyone else.
Great! I think we are under the best possible care, with due consideration to the available possible treatment treatments. I feel like I am being considered as an individual not just another opportunity to provide income to the cancer business.
My husband has the CDK12 mutation. We live in TEXAS but Dr. Aggarwal is his main oncologist. He is on Lupron & NUBEQA. Castrate Resistant too, yet this combo seems to be working pretty well. Had PSMA scan 2 weeks ago and was all clear. He had RP in 2017. No Mets thus far. PTL. We have been told Immunotherapy will probably be next step.
Castrate resistant and Lupron and Nubeqa still working? I am on triplet therapy (as per arasens trial) decapeptyl (triptorelin) + 6 chemo (docetaxel) + Nubeqa as it looks like it gives great chances for prolonged OS and also time to castration resistance, but you are giving me great news if ADT + darolutamide can still work once CR! Ok, I am metastatic and that makes a difference, but still....
yes i believe you alerted me to that fact that i did mention this 2 years ago. i just had a video visit with a new nuc med doctor. i am almost certainly going to do Pluvicto starting soon. i mentioned the CDK12 and he said that they really do not have much data about how effective various treatments are with the CDK12 to the point that it can predict better treatment options. He went in to a bit of details but i forget most of what he said because he said a couple of things that clarified some of my nervous thinking. for example he said that the 10 doses of doxytaxel were not a waste and that they did forestall progression as hoped for. that Pluvicto is the next obvious choice especially considering my complete history and current situation. What was a bit distressing is the prognosis. Based of course on average and something new can always come up but i am thinking of working harder on the bucket list and also working on a bit of a legacy that I need to improve if others are to benefit from it When a friend died a few years ago from pancreatic cancer he left his very useful body of work int he wrong hands where it lingered and nothing will ever come of it. The interest in what I am doing is very limited but somewhat important to the few people who give a shit. And then there is some software I spent the past few months writing that is being very well received but again but a very small number of people.
Dr Aggarwall agreed that it made sense to try chemo before pluvicto partly because at that time only trials were available for pluvicto with chemo naive patients. I think that might have changed. He also agreed that Pluvicto is a good choice now.
lupron will not work for me. i have had orchiectomy so there is no testosterone to reduce last t level was virtually 0 if castrate resistant (cancer progressing with no T) i don't think that any of the drugs that reduce testosterone will do anything. if they have other side effects as well then maybe?
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When a friend died a few years ago from pancreatic cancer he left his very useful body of work int he wrong hands where it lingered and nothing will ever come of it. The interest in what I am doing is very limited but somewhat important to the few people who give a shit. And then there is some software I spent the past few months writing that is being very well received but again but a very small number of people. 
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