I have not heard of Xtandi actually curing prostate cancer, however it does sound like you've had an outstanding response.
One treatment that comes to my mind in cases like yours where you've gotten a great response to a previous treatment is Provenge. Provenge sensitizes your immune system to prostate cancer, increasing your immune response to the cancer. It won't do much for an aggressive cancer, but when you've already beaten the cancer way down it may keep it down. It might be worth researching that.
I see that there are "moderate" drug interactions between Provenge and Xtandi ( drugs.com/drug-interactions... ), but since you're not taking the drug now, that may not be a factor. I don't know if it's safe for cardiac patients.
Best of luck. May you go down in history as the first patient known to have been cured by Xtandi!
Yes! Here's hoping for an Xtandi cure!! (No matter how unlikely that might be). If the predictions of my doctors hold true, my PSA should start going up any day now, but then again, they are just practicing.....
How good would that be ? If however improbable yayahahahaya. I’ve been on Lupron Xtandi for 14 months, the last 7 at <0.01 . I was psa 1400 - 1600 and the combo dropped my psa 1350 the very first month. ( T been less than 20 ) . I’m very sensitive to adt it seems.
That 3 months and still clean sounds amazing ... great to take a break. The SEs kick my mortal a$$ into the dirt but are worth it considering the alternative.
I hope your absence of psa continues to hold brother ... keep us posted.
Thanks, I hope it holds too. I can relate to the ADT side effect ass kicking. After 3 years I was getting desperate for break, but the doctors had me convinced it was too dangerous to stop..... right up to the point a blocked left coronary told me take a break, or else. Apparently ADT can be really hard on the heart . If you get the opportunity, and your numbers are low enough, I highly recommend a little time away from ADT.... you feel sooooo much better, even if it is only for a few months
Yessir brother ... I’m hoping if I can get 18 - 22 months at undetectable ( dreamer ? ) I can get a “ vacation “ too. You know how this weighs on you and drags a person down ... a break sure would be appreciated.
I was DXed October 2018 , my first and only ( so far ) treatment Lupron Xtandi Zometa. You can see from my post above I am very sensitive to adt treatment.
Many / more than half of the people breeze right through Lupron Xtandi, hardly any issues. Supposedly about 30 - 40 percent have difficulties of various degrees.! Unfortunately Lupron Xtandi is devastating, life altering for my old tired bones. I fight many totally debilitating SEs and just trying to stay out of a wheelchair if possible. No biggie , I got this .... if I don’t croak from a heart attack or stroke from the physiological treatment strain yayahahaha.
I thought Zytiga was harder? He has mets, so I think Nubeqa isnt recommended, their site says it's 'a prescription medicine used to treat men with prostate cancer that has not spread to other parts of the body'
I don't have mets but they think it's metastatic, whatever that means. I suppose the cancer is circulating but not in tumor form that can be seen by scans so nubeqa should help.
I was on Xtandi for over 4 years until it started causing BP issues along with all the side effects. My PSA has been undetectable for over 5 years now and doctor Sartor felt that Xtandi was likely the BP culprit, so he recommended stopping it given my PSA. I’m still on Lupron and Avodart and have been for nearly 6 years. PSA remains undetectable and I am contemplating taking a break from ADT.
Meanwhile I’ll likely get one more shot of Lupron next week, discuss things with my docs and then maybe take a vacation. Thanks for your post.
Is that what Myers recommended? Now that I’ve started ADT (lupron/Zytiga-pred) holiday was thinking of starting metformin just to be doing something. Thought I’d start at 500 mg/day and see if any SEs.
Originally Myers yes, but my local MO and Dr. Sartor have no problem with it. Myers has some good videos on YouTube where he discusses metformin use. I get my metformin script filled at Publix supermarket and they offer it at no charge.
If you are diabetic , have high blood pressure and female ( us with no T ) , then metformin will drop your blood pressure ... it’s something to keep an eye on. I’m taking 250 mg of metformin in the mornings and it dropped my blood pressure 20 points on the high end and 8 points on the low end. 1000mg , twice a day would send me to the E.R. . You have to be careful with metformin , keep an eye on your bp and bg and keep close contact with your doctor.
If you are non diabetic and have some T , it’s not supposed to have much effect on you. Just be careful with it.
Hi Ed, Did you notice tiredness when you went to 2000 Metformin per day? I worked my way up to 2000 but dialed back to 1500/ per day. I am going to try again to go back to 2000 after the holidays. Glucose levels good. Thanks Bob
No I don’t think so, I have fatigue bu it’s more likely due to ADT. It’s significant but tolerable. Worst fatigue was from Xtandi, now that I’ve been able to stop it there’s some improvement in that area, but Lupron still dishes out it’s fair share of fatigue.
I was undetectable before I started Xtandi, I was on Casodex, but Dr. Myers switched me to Xtandi, he believed in a very aggressive approach which I also believed in.
Stage 4 here , I’ve been on Xtandi now for 3 years. My PSA is <0.05 since finishing chemo. Scan on the 10th to see if my bone cancer is still on hold. Last time my doctor said I was stabile sounded funny for someone that’s terminal. Keep checking. The monster is good at hiding 🙏🙏😡
Yes, I will be having monthly blood draws to check T and PSA levels while I am "vacationing". It is assumed that PSA will come back at some point and I will have to resume some sort of treatment, but for now, Im going with the belief that PSA 0.000 and holding means Xtandi killed it !
That is terrific. Xtandi is not suppose to cure but then again everyone responds differently. I am hoping your PSA stay at "0" for rest of your life. Maybe xtandi and firmagon is the way to go.
it’s very difficult for your doctor to tell if you’re cured because if even a cell remains can cause problems but fortunately your cancer is in remission and is dormant .I hope this lasts for like 30 years! (I had a relative who lived for 30 years since his advanced PC diagnosis)
I'm not as familiar with Xtandi and don't know if it can directly kill cancer. But cancer isn't immortal. Cells can get picked off by the immune system, poisoned by substances you eat (broccoli!), or just because they're not immortal. So even if the Xtandi (or any treatment) only keeps the growth rate below the death rate, the amount of cancer in your body will decrease. In theory, it could go all the way to 0. At least that's what I keep telling myself.
Your T is still low and it's only been 3 months, but you're in a much better position than if your PSA was rising on treatment. I hope you stay undetectable forever. It would mean you're at the happy extreme of the wide range of responses to treatment.
no, there is no cure for advanced prostate cancer.
You are one of the lucky ones who could probably have gone under the IHT intermittent hormone therapy which is in essence what you are now doing by having this break. The fact that your test came back up is good as it will assist in building your body back up for another round. Stay tuned to your psa scores and do not delay on another round if it starts to rise. Repeat the cycle as many times as you can and good luck.
Yes, that's the plan. Just hope that between my cardiologist and cancer guys, they can figure out how to make the xtandi play nice with my heart when it comes time to start again.
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