CDk12 gene mutation

Hi Anna42 ,

I don’t have anything to offer regarding g your husbands diagnosis .We were struggling and the support from this group is amazing. I don’t know how we would have coped without them. Someone will answer you with support network information.

hugest hugs to you both 

liz & OH xx 

Hi Anna42

This cancer business certainly knows how to kick you when you’re down. From my experience, which pales into insignicance with the issues you are dealing with, the waiting between each stage from investigation to  diagnosis and then on to treatment, is by far the hardest part of the whole process as every waking second is consumed by the  dread of what comes next. I have found the support I have received from the participants on this forum has at times been the only thing that has got me through the day. Misbelief, anger, why me and every negative emotion there is floods your mind making it almost impossible to see any light at the end of the tunnel. That is when this forum come into its own. You must use groups like this and others more generalised support groups to what level you feel you need to. There is nothing like a silly question, as I have no doubt it has been asked before x 1000, so fire away.

i have been lucky so far in that from symptoms to surgery it has been uncomplicated but who’s to say what round the corner. And if things do change to the less favourable I know the great people on here will be around to lend a hand. Use them.

x

Al985

Thank you both. Yes, I can see that now is the hardest, as there’s no ‘plan’ as such - just bad news, which we are trying to interpret ourselves based on Google. Which is never good. I just feel really lonely at the moment and in desperate need of some with a gene mutation showing me it’s going to be ok - but not sure I’m going to get that! Thank you for the continued support xxx

Hello Anna  (Anna42) 

Wow, I am so sorry to read your latest news. I have run a search of the entire Prostate Forum and also all of my Reference Bank notes and can find no trace of this CDK12 gene being mentioned.

I will "tag" Community Member Alwayshope into this post because if anyone on the group has any knowledge of this Gene, she will have. I am sure as soon as she sees the "tag" she will be along.

In the meanwhile the Support Line on 0808 808 00 00 (8am to 8pm 7 days a week) is there for you - Please do give them a call.

Best wishes - Brian.

Hi Anna42 

Im sorry that you find yourself here, though this is a place where you can ask anything and we understand what you are going through. I was reading something the other day about the drug Olaparib which is a chemotherapy drug that targets certain BRCA- associated cancers, It’s a PARP inhibitor. It was saying that it has very good results if it is doubled up with either Enzalutamide or Abiraterone, which are hormone treatment drugs that are common with other men here. I’m not medical, I just like reading about drugs that are available or new. Your CTK12 may not be in that BRCA group. But may be worth researching Olaparib anyway and combining with Enzalutamide/Abiraterone, that may help with questions for when you meet with your consultant. It will certainly make you feel more in control if you get a basic understanding of certain drugs and how they are used while you wait for your appointment. 
I hope you get some answers that are helpful.

Best wishes L

Hello Anna42 & Lorraine (BarryW) 

Now you know me, not medically trained so I didn't want to "muddy the waters" so now Lorraine has brought up the BRCA group here's our information:

The BRCA gene.

i don't know if this helps or not.

Best wishes - Brian.

I am to hear that you have an appointment with your oncologist on Tuesday, nd that's only days away rather than weeks.

The oncologist will know of and will likely be aware of this gene and how they are going to treat your OH, so please try to hold onto that.

It's so easy to say that but oh so difficult to do, but know that we are all behind you supporting you and sending you the biggest hugs 

X

Hello Anna. I am so sorry to hear your news and have very limited knowledge of treatments for prostate cancer with gene mutation. Most of the trial work for CDK12 seems to have been done with patients who are castrate resistant using PARP inhibitors such as Rucaparib which is showing some success as defined by a 50% reduction in PSA (Triton II). Generally drugs work better in the castrate sensitive situation and when a combination are used, particularly alongside second generation antiandrogens like Enzalutamide. They also seem to be looking at immunotherapy either on its own or in combination with the PARP inhibitors. I have dug this paper out of my archives which shows the amount of work being done on immunotherapy for prostate cancer which is vast but it is still early days.

https://pmc.ncbi.nlm.nih.gov/articles/PMC9966657/

With other types of cancer platinum based chemotherapeutic agents are used such as cisplatin to treat patients with this gene mutation. 

This is all very recent knowledge but I am sure that the oncologist will have a plan so hold on to that and try to take a break until you see them on Tuesday. We will hold your hand metaphorically but please let us know what they say.

Hi BarryW thank you! Yes I’ve been reading the same thing. And I think the suggestion is now to add in a PARP inhibitor at the outset, alongside Enzalutamide or Abiraterone, I guess with the same logic as triple therapy - hit it hard upfront. My issue is that all of the OS rates are so low but I’m trying to remind myself that a lot of the data is out of date and also at the hormone resistant stage, and I’m not sure we’re necessarily there yet

Hi Anna42  Right that makes sense, hit it hard upfront is good. Mr BW had the same “Hit it hard” from the start. You are right about the data, things move on so quickly and you really need to ignore a lot you read that is dated. Always check the date because you could be reading research that comes from 10 years ago when these drugs were unavailable. Try to hold steady, there’s so many treatments available for him. The Hormone treatment on itself should put it to sleep. The thing that is really important about your husband is he is young and naturally fit he has a lot to fight with. As a rule this is a cancer for older men and older men could have other problems; diabetes/ heart problems to add in to the mix which affects OS .The bulk of the data is taken from older men. Mr BW was 56 when diagnosed and we were told that the data for a younger man is a lot less and there’s an element of the unknown, does that make sense to you, it’s very unusual for a young man to be fighting with an aggressive stage Prostate cancer,  They are stronger, so no one really knows how long compared to an older man in late 70’s who may only go another 10years naturally . Your husband and mine have got the possibility of going a lot longer if they are receptive to these drugs. 
So, get the fight on. He needs to get his body into good shape, exercise is key, eat well. Cut down red meat, lean towards med diet/ fish/ chicken vegetarian. Drink loads of water. All those things that keep your body happy. I know it’s hard and it’s a very frightening time, I’ve said this before on here, but I honestly thought BW would be dead with in the year when I saw his PSA, I didn’t know what was out there, I didn’t understand how well the medication and treatments work. Things can change, what’s not curable today could be different in a few years.

Lx