CDK12 gene mutation

[Decktime]

My husband continues to be hormone sensitive but Sept. 4, 2023 he developed intense and unrelenting pain in his right mandible. The oncologist and palliative care nurse prescribed morphine and dilaudid to help reduce the pain. These pain meds are helping although he can still feel pain and gets breakthrough pain. Ct scan, MRI, bone scan all show something in the mandible so a PSMA PET was also done. Thankfully, what is going on in the bone isn't further spread of the prostate cancer (in fact there were no hot spots!). He will be getting a biopsy of the mandible in 10 days.

My husband also had both germline and somatic genetic testing which revealed he has the CDK12 gene mutation. I want to learn about this variant and what it means for those who carry it. Does anyone have any articles for a "lay-person" to read? Most of what I look for online is too technical for me to understand.

The Dr. is encouraged by how well my husband is handling his pc treatments (although his QoL is very poor from side effects.) He is 17 months into treatment with undectable psa. If it were not for the jaw pain, we would be very encouraged. We are anxious to get the biopsy done on the jaw so we can know what we are dealing with.

[Tall_Allen]

There are several clinical trials he may be eligible for. I posted them on this thread:

healthunlocked.com/advanced...

[Decktime in reply to Tall_Allen]

Thank you.

[j-o-h-n]

During a HU history search I found one user "JolleySprings" who appears to be asking the same (many times) questions you're asking regarding the CDK12 gene mutation. By now he may have some of the answers you're looking for......Regards to you and your dear Husband and I hope his pain finally stops for good!!!

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 11/19/2023 5:43 PM EST

[Decktime in reply to j-o-h-n]

Thank you.

[JolleySprings]

Any new reports on your husband and CDK12 Mutation?

[Decktime in reply to JolleySprings]

No new reports re the CDK12. As far as we can tell nothing has changed. But I would be interested to know if you have any thoughts for me in what you have learned from experience and research. - Re. the jaw pain, we are seeing an Infectious Disease Specialist in three days to discuss biopsy finding of a fungal or bacterial infection in his mandible.

[JolleySprings]

I have learned nothing new from docs or research regarding CDK12. Docs says lots or research being done etc. My husband is in year 7 of the battle. As of Oct of this year no metastasis has been revealed. However, he has become Castrate resistant and his present treatment of Lupron and NUBEQA are no longer effective. His PSA has climbed to 6.5. Doc says we are more interested in scans than blood test at this point. He will have a PSMA in mid January.