We need to call back MD Anderson about setting an appointment with them for 2nd opinion /options available, etc
I follow this site and there are so many treatments, drugs, talked about that is fine it beyond my comprehension. I know there are things in should be asking but haven't got a clue what they should be. Any hints on how to start this? I want to get it right for him
Ask what treatment plan they would recommend and anything that pops into your head. I carried a small note pad and jotted things down as they occurred to me. Could also be done on a phone
Ask "what options are available", write them down. Also let us know a little about you medical history, when diagnosed, mets if any, past treatments if any, general health, etc.
Prostate cancer, stage IV with bone metastases. Germline/somatic mutational testing negative for BRCA1/2 and MSI stable. TMB not evaluated. PSA rising with a doubling time of 4.5 months on darolutamide. New focus of increased uptake in the right ninth posterior rib, consistent with metastatic disease seen on bone scan 11/9/22. No new metastatic lesion seen on CT of the chest/abdomen/pelvis on the same day.
Prostate cancer 6/2020 stage IV (cT2a cN0 cM1b), Gleason 4+4, PSA 110, multiple bone mets
-ADT with Lupron 7/2020 (Allen), PSA declined from 110 to 8, increasing to 25 in 12/2020.
-rising PSA and declining urinary function 1/2021, enzalutamide instituted with excellent initial PSA response but cognitive decline necessitating 50% dose reduction. PSA rising late 2021.
-denosumab 60 mg every 3 months 2021
-transition 1/2022 to darolutamide 600 mg twice daily due to cognitive dysfunction and tremors on enzalutamide. Darolutamide better tolerated but intermittent right arm tremors.
- Germline/somatic mutational testing negative for BRCA1/2 and MSI stable. TMB not evaluated. Variants of uncertain clinical significance include EZH2 C289Y and MET H542H.
Add your details to your bio (voluntary but it will help you and help us). Thank you.
j-o-h-n <===<<< Senior management is about to spike my spikes....
Good Luck, Good Health and Good Humor.
j-o-h-n Wednesday 04/05/2023 3:58 PM DST
Some options you may consider are Zytiga, Casodex and Xofigo. Not together but individually. I mentioned Casodex because it has fewer side effects.
I have had good luck with all of these.
Here is my 'woulda-coulda-shoulda' list of what I would do, if by some miracle I could do this over again...see if anything here helps your decisions going forward;
healthunlocked.com/active-s...
I asked for and was rebuffed on genomic testing; my surgeon wanted to operate and my radiologist wanted to radiate and I was asking them to do neither, so why was I surprised none of these procedures interested them...but, take a look at this mapping. See if there are not some tests that you can take to really see what type of disease, what manner of PCa cell, you are dealing with! Not all of our PCa cells were created equal...the key is knowing if your cell type is lethal or not...it makes need for aggressive treatment necessary or surveillance a better choice. Once you go forward there is no backing up in this disease...you give up QOL and function (incontinence + ED) and you cant back up...but your alive! So its key to try pick the treatment like Goldilocks would and get it 'just right.' You know you have done it right when, even if your outcome was not ideal you are satisfied you moved forward with knowledge and not just on whim and hope...check out this mapping on genomics, plus the podcast on tools and see if you cant find 2-3 tests that you can ask for, and others that may be needed, along the way...
healthunlocked.com/active-s...
healthunlocked.com/active-s...
Know this...its very likely that, with good treatment and sound decisions, some (I hope most) will pass away with this disease, not from it so watch out and dont try to 'kill flies with hammers.' It works but its hard on the furniture...I did that, was very aggressive and regret some of my decisions now as they may not have been needed...BUT take great care. Find out what type of cell you have, if its of lethal grade (GS does not give you this). Then, if it needs to be hit with a sledge hammer smash it! But, if you dont have to move forward with a treatment, if there are tests to monitor and calibrate your decisions, take that path! Dont take no for an answer...you dont have years to decide but you have some time to study this and make the right choice...let us know what happens...Rick
that was super helpful! Thank you
You're in good hands with MD Anderson. I was assigned an excellent oncologist, Paul Corn. First appointment he introduced himself then he asked me about me. I was blown away. He's really interested in the person. He's a PhD and MD and is well versed in all the current research.
All that to say, of course, don't blindly trust whoever they set you up with but be assured you're at the place where a lot of great research is being done.
If you travel there, consider staying at the Jesse H Jones Rotary House hotel. It's attached to the MD Anderson complex by a series of skywalks so you never have to go outside. Very nice hotel, clean, reasonably priced.
that is great to hear. He is who we asked for since he specializes in cancer that has Mets. I'll have to check out the place to stay 
I would say that number 2 there and not a step down is Dr Ana Aparicio if Corn isn't available. I was very impressed with my visit with her.
if you’re seeing an MO, make sure you also get an opinion form a good radiation oncologist
not to sound stupid but what's an MO?
MO is a medical oncologist
Yes on dr Corn. He will have a plan
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