Well Darolutimide didn’t work for long, about 6 weeks. My husband aches everywhere. It’s so hard to see him this way. Waiting to see what’s in store for him next. I feel so down and defeated. I don’t know what his options are. He has never been on Xtandi. Not sure if that will work. Nothing seems to work. My heart breaks for him. We see Dr Beltran next month. Hoping we can get something in the mean time. Damn you Cancer!!!!!!
Psa: Well Darolutimide didn’t work for... - Advanced Prostate...
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Fight11
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Hello, If your husband is just on a Lupron type drug and It is no longer working then the next level is either Xtandi (enzalutamide) or Zytiga (abiraterone). They are the Pepsi and Coke of second tier drugs. Both have their supporters (and detractors) and both have side effects. In recent years the "Lutamide" family has expanded to include Erleada (apolutamide) and Nubeqa (darolutamide). Those are options as well. It sounds like you took the darolutamide option. If Darolutamide is not working for your hubby, then you might want to switch to Zytiga which has a different mechanism of action than darolutamide. Xtandi is the same family as Nubeqa and Erleada. Good luck!
My husband has been on several treatments. Unfortunately none have worked very well. He is castrate resistant. He has been on Zytiga, Keytruda, Lynparza, different chemos and now Darolutimide. I pray maybe the Xtandi might work!!!
Hello, Not aware of hubby's previous treatments. Sure give Xtandi a shot. Enzalutamide does cause fatigue so take the four pills at night. You might also start looking at Tier Three treatment options like Lutetium or chemo.
He has been on a chemo did nothing. Thank you so much for your feedback
I was not aware that Darolutamide was used to treat pca with mets. How is it working so far?
Worked for about 6 weeks
Can you radiate? How about chemo?
My husband has been on several treatments. Unfortunately none have worked very well. He is castrate resistant. He has been on Zytiga, Keytruda, Lynparza, different chemos and now Darolutimide. I pray maybe the Xtandi might work!!!
I have been on xtandi for 3 months & I started achy all over & psa just going up all the time. So dr stopped xtandi, told me I have to start chemo & prednisone...had 1 chemo treatment. About 13 days later started having pains all over...muscles in back & leg/hip...I'm due to take chemo again this Friday (every 3 weeks) but I'm not doing it...its killing me! I'm looking into alternative medicine like going to Mexico....yes I know it's going to cost alot but at least I may get a chance at a better qol.
If Mexico is truly a thought I have a Dr there in a clinic that does treatment lived there for close to 7 years
Did you do genetic testing?
Yes CDK 12 mutation. We are just about out of options
I don't need it now, but for the very far future my doctor said about a possibility (maybe a clinical trial? I am not sure) of carboplatin plus BAT. I think they would also need to do a genetic testing for that. So you are on ADT (Degarelix) and every 4 weeks you get a depot testosteron injections into bought of your buttocks. The effects of testosteron injections last one week. Plus as I said carboplatin chemotherapy. You can stay on BAT longer if it is effective. You need some sort of genetic testing for all of this. I am sorry but i was just told about this as an exotic option far in the future. I am not sure how it works and maybe i said something incorrect. You should be able to ask your doctor about this or maybe search the clinical trials site if they have it listed. If you can find something else more Standard of care.
in reply to trianfolia
Have you looked into any alternative treatments other then traveling to Mexico. I read for hours and hours in hopes that if one thing does not work we will have something else to turn to quickly. This is just a horrible disease....I am so sorry!
trianfolia in reply to
Yes it is a very horrible disease.
Would he be eligible for one of the BITE trials?
Hello, That leaves Lutetium 177 if Xtandi doesn't work. It has only recently been approved by the FDA but it is in widespread use in Germany, Australia, India, South Africa and many other countries. If your husband can manage international travel (and you can afford it) you might want to seriously consider this option. It requires a PSMA PET scan prior to infusion to see if your hubby's cancer gives off PSMA. Good luck!
I've been through all of the SOC Treatments, am taking Xtandi while waiting for the next step in my CAR-T trial. Zytiga didn't work at all but I've had dramatic improvement with Xtandi. Hopefully that will be the same for him.
May I ask are you castrate resistant? Have you done chemo?
I was on finesteride for what my prior urologist thought was just BPH. By the time my PSA rose and I was diagnosed, I was already castration resistant. You can see the treatments in my bio. I've had both docetaxel and cabazitaxel. Docetaxel dropped my PSA to 1/3 of the peak, it has mostly risen during all other treatments
What gene mutation do have?
Nothing treatable. About 10% of my original biopsy showed P53 mutation. My cancer is aggressive, but doesn't have the triple mutation associated with Aggressive Variant Prostate Cancer
When we’re you diagnosed? My husband has the CDK12 mutation. Can’t seem to find out to much info on that
My husband had the CDK12 mutation also.
Do you know anything about it?
Just what I have googled which is very frightening! Dr. Aggarwal said there are some studies suggesting Immunotherapy drugs may be helpful at some point. We are in year 5 and thus far Lupron has worked.
My husband is castrate resistant. Nothing seems to be working and if it does it’s for a short time. I’m just so beside myself. Feel like were on a slippery slope.
Oh how I understand exactly what u are saying! It is heavy cloud that hovers constantly! Do you have a good Oncologist?
We do! The one locally not so much. However we go to Dana Farber Boston Massachusetts Dr Beltran. She is wonderful!
What knowledge of CDK12 mutation does she have???
She said it’s not a very common mutation!
Has he had Xofigo?
Is that Radium 223
Yes
Not as of yet!!
I have been on Xofigo for the past three months. I go in June 2nd for new imaginig to see if it has made any difference. I'll post back here here once I find out. I don't see my MO until June 9th so it may not be until after that. I get the reports on MyChart but the lingo is not always so that a layman can understand it.
Has your Doc. considered Apalutamide (Erleada) & Lupron? We don't know if I am castrate resistant; didn't want to wait & take the chance. I went from 1 large met. (.4 PSA) to many & PSA 7.3, before this combo & within a month (knock on wood) PSA went to 0.7. No side effects, per se!
He is castrate resistant!! Nothing seems to be working. He has been on Zytiga, Keytruda, Lynparza Docetaxel, CabazataxelAlso with Carboplatin now
Darolutimide which failed in 6 weeks.
He has never been on Xtandi we were told
It won’t work it’s very similar to Darolutimide.
To say I’m nervous would be an understatement.
It's so frustrating to have treatment lines fall after a short time. I'm betting the farm on immunotherapy, but there are no guarantees that it will.
My guess is that for people like me and your husband, a combination of immunotherapy approaches are needed, something to increase immune response while tamping down immunosuppression. The City of Hope CAR-T trial uses chemotherapy to kill of T-cells and macrophages before injecting modified T-cells. I've heard of another trial at University of Chicago that does both of those, and adds an immune checkpoint inhibitor.
I know you've been down sone trial paths that didn't work, but there may be others. I also know how difficult it can be to keep in the fight when treatment leaves you exhausted. I'm praying for you to have the strength to endure. I'm also in awe of what you have already been through.
He has tried Keytruda failed
I understand. I think checkpoint inhibitors by themselves aren't having the efficacy that is hoped for.
By immunotherapy, I meant directly manipulating the immune system with CAR-T or BITE. There are also some early phase trials for small molecules that activate the immune system .
Is provenge and Keytruda similar to each other ?
No, Keytruda is an Immune Checkpoint Inhibitor (ICI). It turns off the built in inhibitor inhibitor pathway in the killer T-cells to allow them to continue attacking cancer cells. It seems that there is another mechanism in prostate cancer that stops the immune system from attacking the cancer.
While there has been great success with ICIs for blood cancers, it hasn't worked well for solid tumors like prostate cancer. For patients who certain repair defects in the cancer genes, Keytruda had been effective. Not everyone with the defect has success with Keytruda, and I don't think researchers know why that is.
Provenge is a vaccine that modifies the Antigen Presenting Cells to recognize an antigen on the cancer cells. The modified antigen presenting cells are put back in the patient where they use the natural process for training T -cells to recognize the cancer. In my understanding, they still don't overcome the immune suppression and have limited effectiveness because of that.
CAR-T manipulates T-cells directly, and suppresive immune cells are wiped out before the modified T -cells are infused.
BITE attaches a molecule to cancer surface antigens and has a point where T -cells can attach.
All of these are types of immunotherapy, but use different mechanisms.
Going to ask MO and pray something works to buy sometime
Will update!! You got it. And thank you
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