Latest on IRE Nanoknife Focal experience
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Hi,
If it was me I would do the ADT drugs and then the radiation to follow. I would leave the Chemo as a last resort as Josephg said. The chemo is nasty stuff, I would not want to combine ADT side effects with chemo side effects but that’s your call, I like Josephg outcome. As you can tell I am not a big fan of chemo for Prostate cancer. Good luck with your decisions. I have included a link on some chemo articles.
https://www.nejm.org/doi/full/10.1056/NEJMoa040720
Dave 3+4
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Thanks for your reply! Yes, I believe the standard of care is to reserve chemo if ADT fails. Some experts however like Mark Scholz from PCRI and Eugene Kwon from Mayo Clinic have advocated that hitting the cancer harder earlier with chemo along with ADT increases the odds of remission. It is known as Triple therapy. It seems that Relugolix (Orgovyx) is similar to lupron but Relugolix has some advantages. Your treatment sounds almost identical what is being recommended to me. Were you taking the Lupron and Abiraterone at the same time? I've been started on Relugolix but have not yet started on the Abiraterone? I think I'll send a note to medical oncologist to ask why the delay. I'm glad for your remission and it gives me some hope that perhaps I might have a similar result. I'm just an average Joe and am finding all of this Pca information which seems often conflicting very difficult to navigate.
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Thanks for the links Dave! I've been reading as much as I can, but many of the articles are too technical for me to really understand. I end up mostly reading the discussions or results. The more stuff I look at however, I'm finding lots of conflicting information. One thing jumps out at me about chemo, is that it can kill the cancer whereas ADT only suppresses it. I like Josephg's outcome as well. I hope I am as lucky???
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Have you texted keytruda,it has saved my life
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Hi,
Have not read any articles where the chemo will actually kill the cancer so you are cancer free. From the articles I read, the chemo buys you more time by slowing the growth. Please point me to the papers or articles that says chemo can kill all the Prostate cancer cells so I can educate myself, then chemo would be worth the side effects.
Dave 3+4
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I've found several statements from renowned Cancer Institutions that Chemo can kill Pca cells, but none say "all". I've found a few articles and videos that indicate along with ADT inclusion of Chemo while the metastasized Pca is still castrate sensitive as it may be in earlier stages is more effective at destroying it.
Below article is 10 years old, so not sure how relevant it is now?
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Hi,
Can’t imagine the side effects of ADT and Chemo together. Read the article you sighted above, end result seems to be an extension of life(about 12 mo.)but no cure. Josephg treatment has bought him 4 yrs. of remission, sounds like a good path to emulate without the effects of chemo. Your body your choice, your quality of life along your journey has got to account for something. If it was me I would go to another set of doctors/hospital network for a second opinion.
Dave 3+4
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As mentioned above by Dave, and let's be clear about this. Chemo is a palliative treatment, meaning that it slows PCa growth by killing a percentage of PCa cells, but never all of them. Chemo is definitely not a path to a cure.
Yes, over the past 5 to 10 years, there is a growing body of evidence suggests strongly that hitting PCa hard with multiple simultaneous treatments tends to generate more positive outcomes in the fight against PCa. I was placed on the simultaneous Lupron/Abiraterone/Prednisone cocktail for 2 years coupled with SBRT, after cases that Dana Farber has been following with their international research partners in Europe produced positive outcomes for significantly longer term remissions, with even a few cases suggesting a potential cure.
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Hi again Josephg
Well, I'm resolved to go with the flow and see what the future beholds. These people seem like they know what they're doing. The Fox Chase medical oncologist has recommended both orgovyx and zytiga with prednisone. I am a bit concerned that she has only ordered the orgovyx thus far. Seems to me taking both earlier might be a better plan. I just sent her a note via mychart asking about this. How did you fair your treatments? Taking the zytiga pills seems like a pain due to the no food 2 hour prior and one hour post requirement. That along with the daily radiation must have been a workout?
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I was never given any food timing restrictions with Zytiga, so this was not an issue there for me. The SBRT therapy was given in 3 visits, so there was no real scheduling issue with these treatments.
Side effects were similar to Lupron alone, so I was not impacted any more than when I was while on Lupron alone several years earlier. Not pleasant, but much better than dying, IMO.
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Had an appointment today with Fox Chase Radiation Oncologist. Before commencing with treatment I'll need to go in for a preparation appointment where they will be fitting me with some sort of positioning cast. It requires some bowel preparation. More fun! Lols! I also have to choose between conventional 8 week treatment or a shorter hypofractionated course of 5 weeks. From what I'm understanding, the short course might be slightly more effective for aggressive cancer (which I unfortunately have) but comes with a slightly higher risk for bowel and urinary side effects. I'm leaning towards the 5 week? Anyone have any experience with this?
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Hi,
If you are talking external beam radiation make sure they use the space OR gel between your Prostate and rectum and bladder to protect from radiation damage.
Dave 3+4
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I agree completely Dave 3+4
I had 28 radiation visits ending in June of 2023. Was also on Lupron at the time. My radiation oncologist never even mentioned SpaceOAR hydrogel. The radiation team just wanted me to make sure I had a full bladder and an empty rectum for each visit to "minimize" the chance of radiation damage to the rectum.
Within a few months after the radiation was finalized I started having bouts of rectal bleeding. My PCP recommended a gastroenterologist who scheduled me for a colonoscopy which determined that I had "chronic radiation proctitis." He started me on Mesalamine suppositories which were not fully covered by my insurance. They were a pain to use and didn't really help very much. A relative who had the same experience recommended using a high fiber supplement to bulk up the stool and that has helped tremendously. I still have occasional bouts of rectal bleeding and probably will for the rest of my life. As a bonus, I have been told that the damaged area in the rectum may be prone to a new cancer sometime in the future.
If I had been aware of the possibility of using the SpaceOAR hydrogel I would have INSISTED ON IT!
Older (and wiser) now…
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Thanks for your comments guys! The Spaceoar might be an issue. The radiation oncologist pointed out that the ablated area from the Nanoknife IRE procedure may be problematic for injecting the gel. She has seen complications like infections. Although she didn't specifically say not to get it, she was steering me away from it. She also pointed out that it will delay by weeks the beginning of radiation. Nothing is strait forward in Pca.
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Yikes! Well that does not sound like fun! I just sent a note to the Radiation Oncologist asking for more explanation of why she is not recommending the SpaceOar. I'm also worried about cystitis. Did you have any issues with urinary function after your 28 visits?
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No issues with urination. I was taking Flomax for years before the cancer diagnosis. Still take two a day. Urination is better than it has been in years. Recently have been getting up only once a night to pee. It used to be 3 or 4 times.
Other than the radiation proctitis, my biggest issue was caused by the Lupron (ADT) injections. The ADT stops your body from making testosterone. The lack of testosterone has caused a bunch of issues. Weak muscles leading to joint problems has been a real issue. I've been in physical therapy 3 different times since 2023 and am currently suffering from extremely painful knees. It's been over a year since I had my last 6 month Lupron injection but my testosterone is still very low and, I've been told it may never recover completely. Still have occasional hot flashes but they are tolerable.
Thankfully my PSA remains undetectable - next check in April of '25
We all react differently to the various cancer treatments. Hope you have minimal problems going forward.
Oldernow
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Hi,
If it’s available you could look into Proton therapy which uses a fixed length beam that does not go past the tumor sight, thus no need for the gel. Might want to look around your area to see if this is offered.
Dave 3+4
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