Hi all...had another meeting with Urologist after he presented my case to the Tumor Board.
(50yrs old male, gleason 9, 2 mets)
The outcome from that is they think I am great candidate for triplet therapy. I recall in my initial post about being diagnosed that triplet therapy was mentioned alot.
My question for you is what does this plan do for me that current Lupron doesnt? That sounds dumb, what I mean is that the spreading prostate cancer cannot be cured or removed. So does this triplet simply slow it down even more than current Lupron?
The urologist is not the MO/RO so he didn't want to try to speak for them but he indicated it should give "another chunk" of longevity and also improve quality of life.
Basically due to age and health they want to be "super aggressive" with my disease which I can get behind - but, to what end I guess is what confuses me. We cant remove it so to speak so what does being aggressive do?
Can you all give me your thoughts on this?
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Yzinger
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Please read lots of my comments in is forum. You are very very fortunate to be considered for triplet therapy. Put therapy is not normally yet standard of care. Do your homework you will realize that triplet therapy includes an ADT, could be Lupron or Degarelix - lots of trade names. But asking if triplet therapy is better than just Lupron is like asking if a car is faster than a tricycle. Now start reading some of the serious research alongside some of the great posts in this forum - triplet therapy will probably give any patient eligible for it significantly more years of life. You need a medical oncologist as well as a urologist. Bravo your urologist for taking you in the direction you have shared. Don't forget that your family physician is also important - there are lots of prescription things that the cancer doctors don't have time to look after and you will need your family doctor to do this.
Triplet therapy earlier this year reduced my metastatic cancer load significantly. Not quite full remission, but no active cancer seen anywhere except the left seminal vesicle. It also reduced my PSA to 0.014
At diagnosis a year ago I had active cancer in the entire prostate, both seminal vesicles, the nuerovascular bundle, the bladder, a lymph node, the pelvis, the sacrum, three spine discs.
The chemo isn’t fun, but it wasn’t horrible.
If they offer you triplet therapy, I would say yes, in a heartbeat if I were you.
Look up the Ytube vid by Dr. Kwon. If you do med sequentially, each time the disease gets harder to treat ( may be stronger?). If you do combination meds as in triplet, you can get rid of more if of the tumor. So the outcome is better. Seems to make sense?
Dont mind me. I am just another layman trying to make some sense out of the whole thing. Most times cannot even cope with all the acronyms.😊
Like I say I am a layman trying to make some sense out of the whole thing. I am still struggling with all the different names and acronyms. What your doc uses and is good for you is fine. No problem. I am not in any contest. 😊
That's not correct (in my case). I had metastases to the spine, the pelvis bone, the sacrum and received triplet therapy of NUBEQA, Lupron, Docetaxel. The ARASENS trial that I referenced specifically tested that combination.
"The ARASENS trial is a randomised, Phase III, multi-centre, double-blind, placebo-controlled trial which was prospectively designed to investigate the safety and efficacy of oral darolutamide, an androgen receptor inhibitor (ARi) in combination with the chemotherapy docetaxel and androgen deprivation therapy (ADT) in patients with metastatic hormone-sensitive prostate cancer (mHSPC). 1,306 newly diagnosed patients were randomised in a 1:1 ratio to receive 600 mg of darolutamide twice a day or matching placebo, in addition to docetaxel and standard ADT."
I was in the same situation as you. Gleason 9 at 52. 12/12 cores positive, lymph node Mets and one bone met. In great health otherwise.
Based on advice here, I got second and third opinions from an accredited cancer center and they all recommended triplet therapy for me plus radiation. One doctor said “you’re young, this cancer is aggressive and you need to treat it aggressively”.
I started with Eligard 3 month and darolutamide. After about 6 weeks, I started with my first Docetaxel infusion in July 2022. Infusions continued and I finished end of October 2022. Radiation was in December 2022 / January 2023. (Radiation was to prostate/ SVs, pelvic lymph nodes (the whole region) and my one bone met.)
Most recent 2 PSAs (April and August 2023) have been <0.1. I feel great (except for having no testosterone) with minimal side effects.
I previously posted about “Docetaxel Chemo: What helped me” which has some helpful info as you prepare for Chemo.
I didn’t have nausea from docetaxel but was pretty tired the weeks of my infusion. Also got a restless feeling. Radiation gave me a fair amount of nausea. Low dose THC was super helpful in managing all of it.
Definitely ask your doctor about something for anxiety. Zoloft 50 mg daily helped me and had the added benefit of helping to minimize hot flashes from ADT.
I’d also ask about 5 mg daily Cialis to help maintain erectile function.
Happy to share my experiences if you want to DM or speak live.
My cancer is not your cancer and I am a study of one, so...
Here's, my clinical history (attached).
When surgery and SRT failed, my PSA began climbing, PSADT was another indicator along with the time to BCR and GS of its aggressiveness. When my urologist said "Kevin, I don't like what your PSA is doing..." well, action was required.
Monotherapy was not going to do it, so triplet therapy it was. I was sixty one and other than the PCa, healthy and fit.
As you can see from the chart, from the time my last Lupron cleared my sister to April this year when PSA began to climb and we started doublet therapy, SBRT and short term ADT, roughly 4-1/2 years off treatment.
So, my understanding, advanced PCa is not curable but it may be manageable. How you manage it may be a function of your clinical data, how aggressive is it. In your case, the GS9 is clinical data that supports aggressive treatment decisions, monotherapy is not aggressive, Think of it this way, rather than linear and sequential treatment, each destined to fail and then death, combine treatments and bring them forward in one's disease when the cancer is not so widespread to overwhelm it (a layman's view!).
I did triplet therapy, exactly what they're planning to put you on (Zoladex for ADT, D-mide, and 6 x 3-week cycles of Docetaxel). It's extremely effective.
Think of it through this analogy: For years oncologists have been battling advanced prostate cancer by sending in the army only, with no air or naval support. This is an inferior approach to fighting a war, but a combined arms method has more chance of success at defeating the enemy. By administering 3 classes of drugs simultaneously, our chances of fighting back the cancer/longer survival are improved.
Each branch of this treatment has a specific purpose:
ADT component: Drops androgens in your body to near-zero, starving PCa cells of the stimulus they need to grow (and usually causing some to die and tumors to reduce in size)
2nd Gen anti-androgen component (Darolutamide in your case): Blocks the androgen receptor on PCa cells so that the little androgens left (including from the adrenal glands) don't stimulate them. This also can target any ADT-resistant cells that can make their own testosterone early on by blocking their receptors as well.
Injectable Chemotherapy: While the cancer cells are frozen and blockaded by the ADT and Darolutamide, the Docetaxel attacks and kills them.
Some treatment plans now include the "Marine Corps", radiation to the primary tumor/prostate for more effectiveness ("quadruplet" therapy in a way). My outcome on triplet therapy was so successful that my MO team is recommending I don't do this, as it would likely just cause lots of collateral damage/GU side effects for very little gain at this time.
As to what those results were, at age 48 I started with a 6cm primary tumor in my prostate with full invasion to the seminal vesicles, 7 lymph node tumors, and 5 bone Mets across my tailbone, spine, and shoulder blade. My PSA was 104 right before starting the Zoladex. 6 months later, after the Docetaxel cycles were complete, my PSA was ZERO, my prostate was normal-sized, the lymph nodes were all normal-sized, and the bone mets appeared to be inactive (structurally these never go away though).
I should mention that I did a couple things that I think helped the effectiveness of the therapy. First, I took a tablespoon of black cumin seed oil every morning with breakfast, as I found research that it could increase the effectiveness of the chemo (Google "Docetaxel Thymoquinone"). I also took 4g/day of Turkey Tail Mushroom extract (minimum 25% beta-glucans), as there is some research showing active ingredients in this can help with chemotherapy.
You're ironically fortunate that you were diagnosed with advanced prostate cancer during this era. With triplet therapy, think of your diagnosis not as a death sentence but a "life extension". You don't need it to keep you alive and healthy for 30 years, just long enough for the next big treatment breakthrough. This is a very exciting time for promising prostate cancer therapies (think gene therapies, Dostarlimab, etc), and soon enough there will be something that'll bring us all to cancer-free status.
Good luck on the treatments, and feel free to ask any questions along the way.
I completed Triplet Therapy Lupron, Docetaxel (Chemo), and Nubeqa November 2022, castrate sensitive. Metastasis to Spine and Occipital Bone. My last PSA results for March 2023 and June 2023 were <0.05. Recent Scans reveal lesions on spine and occipital bone have stabilized with no additional lesions. No pain. Side effects from treatment are tolerable. Exercise, diet and good nights sleep help. Love and Endure.
Don't be shy about asking your doctor for stuff to calm you down and help you sleep during this time. It's quite normal in this period to have your mind race at all hours of the day with all the what ifs, and with all the processing of new info from your doctors and online sources. I got a prescription for 20 Ativan, and took one whenever I'd be lying in bed and couldn't sleep after an hour. Once you develop the right perspective and positive outlook you won't really need them anymore (I still had 10 pills left after 6 months).
Insomnia can be a real problem during chemo (they give you corticosteroid medication around the time of your shots to counteract some sides). I found CBD oil at 20mg before bed was great for getting to sleep during these periods.
Yes to triplet therapy. This disease does not follow any set of rules but if you have a good response it will help buy time. I say this having been through triplet therapy and having a pretty rough time with the docetaxel. I also received Abiraterone as the second generation ADT drug.
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