Hey Guy’s- I appreciate this group starting. Having a slightly more age relevant group is a great idea.
Here’s my situation:
Diagnosed on my birthday at 46; stage 4 Gleason 9. Lymph nodes involved and masses developing at the base of my penis. That’s a shitty birthday!
Fast forward past a lot of research and second options, tests, scans, stress. I started Lupron and cassodex immediately. Then continued tumor development made me do chemo and radiation at the same time. Chemo was etoposide and cisplatin. Radiation was the 35 days on the table getting my pelvic radiation. That was the summer of 2016. Then back to Alaska.
In less than a year the PSA was on the rise so I started Zytiga. Zytiga lasted less than a year and PSA rise made me leave remote Alaska for the lower 48. I started a High-Testosterone clinical trail that helped with some PC but not others, PSA took off. I started Xtandi but that only lasted 2 months before PSA rise.
After the Xtandi failed it was back to chemo, this time docetaxel. I also started some targeted high dose radiation on some bone mets to beat it back and help with bone pain. I did about 6-7 cycles of the Docetaxel then it failed and PSA started up again. So now it’s about 3 years later 2019.
Then I got a Hail Mary in late 2019, genetic testing indicated I was MSI-h and qualified for pembroluzimab (Keytruda) immunotherapy. By the second cycle my PSA dropped from 86 to undetectable. I’ve been over a year now with an undetectable PSA. Talk about a Hail Mary!!!
Stay strong brothers!
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Chugach
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Happy to hear of your great response to immunotherapy. In my case, genetic testing said it's a poor match for me. However I respond exceptionally well to some types of chemo, and wouldn't be alive today if immunotherapy was my only option. Different treatments for different cancers.
I'm reading more and more about Keytruda and other monoclonal antibody treatments. We are all cautioned again false hope and miracles, but immunotherapy appears to be a solid direction. Our immune systems remove all sort of anomalous cells daily, until it suddely starts ignoring one type and they are allowed to take hold and multiply. Restoring proper immune function has all kinds of logic. It makes radiation, surgery and chemo all seem so barbaric - like putting a fire out with dynamite vice placing a wet blanket over it.
So happy to hear of real world progress, whether a Hail Mary or just the next therapy.
Thanks for summarizing your experience. You were very young at diagnosis. I was 55. Did you have family history of cancer? I had none. I'm glad you have found success with immunotherapy. Let's hope it keeps working.
Do you miss Alaska? I used to live in northern British Columbia and have been up to Alaska and the Yukon. I loved it up there.
Hey Mark - both my grandfathers had PC. But they tested me and said I wasn’t passing cancer genes to my kids.
I hated leaving Alaska. I mourned leaving for like a year, it was so awesome and so hard to leave. I love the wilderness where humans have just a toe hold in the edge of the wilderness and big ol brown bears walking through their yard!
Glad the Keytruda is working it's magic with you! There have been very good reports in results about it's using and MSH Hi and MMR from what I've seen in studies! Hope it continues! I'm also of the opinion the Immunotherapy road is going to provide great benefit to patients. The thing is getting individualized diagnosis and treatment and not be characterized into groups that take the averages.
This: "The thing is getting individualized diagnosis and treatment..." Precision medicine will hopefully be the future, where specific genetic mutations drive treatment instead of where the cancer originated. I was on Atezolizumab (similar to Keytruda) for a while based on my diagnosis and it did nothing. A friend was on it and his immune system destroyed his thyroid gland and his cancer returned. These drugs do *not* restore a healthy immune system, but rather take down barriers between the immune system and all your cells which can cause autoimmune like side effects.
Sorry to rant. Immunotherapies are another tool in the toolbox but they are not a miracle drug that work for 90% of patients, or even 90% of patients that appear to be good candidates. For some people they do produce miraculous results and that should be celebrated. For me, they didn't work but I'm finding success with folfiri which is a decades old colon cancer chemo that is attacking my prostate cancer where cabazitaxel failed.
And how did you wind up coming across Folfori? I'm always curios as to anomalies and these examples outside the norm. Very happy too that you've found something that's working! A tide lifts all boats
I do agree somewhat, and wasn't implying any miracles and called it magic for a reason, lol. But for the matter, the real issue would be the individual diagnosis and detection of character traits or here, specific genetic markers that are associated with certain clinical outcomes that drugs are available for as a treatment modality. Like every treatment, it doesn't mean that there's one stop shopping for all. And o also believe once these markers are identified, their use should not be dependent upon other features such as castrate resistance, just because that is the way they were administered on a trial. Especially when the drug has nothing to do with castration performance... But directly respondent to a genetic mutation. It's counter intuitive to lump it all together in my mind because the action/causation are different. And yes, even as a first line treatment if the genetic structure is identified should be ok.
I fully admit to being a bit touchy about immunotherapy because it didn't work for me, despite stories of great promise. I'm a scorned lover. As for folfiri...
In January 2020 my cancer progressed despite an undetectable PSA. After some tests it was diagnosed as neuroendocrine prostate cancer with metastases to bladder and liver and lungs. I responded well to carboplatin + etoposide + atezolizumab, and achieved complete resolution of liver and lung metastases, only for the cancer to return three months later. My PSA also became detectable over the summer.
My MO, who has been treating cancer for decades and used to work at Dana Farber, had a handful of ideas, but wanted me to go to Dana Farber for their opinion. Their suggestion was stop the abiraterone (it wasn't working) and start cabazitaxel. My PSA initially spiked to 0.16 after starting abiraterone, but cabazitaxel brought it back down to 0.03 and stopped progression in one of my ribs. Unfortunately my liver and lungs became overrun with neuroendocrine cancer during this time. My platelets and hemoglobin were plummeting, and if the platelets dropped any further they would be too low to proceed with treatment, and if that happened I figured I'd be a goner in a month or two based on similar stories of neuroendocrine cancer.
So back to Dana Farber, where we decided to try folfiri administered by my local oncologist. We did talk about trials and other drugs, but based on the limited data available they weren't any more likely to work than folfiri (about 30% chance of shrinking tumors based on retrospective studies).
The response was dramatic. I just had another CT scan. My lungs are almost clear, and my liver has fewer and smaller tumors. It still looks awful, but much better than before, and after only 4 cycles of chemo where 12 is the norm. My platelets normalized, my hgb went from 9.x to 11.x, and my neutrophils are acceptable without using neulasta. Yes, my blood counts improved on chemo. It's one advantage of being diagnosed young.
I consider myself to be an extremely anomalous case, although if there are retrospective studies then other MOs have been trying folfiri for various neuroendocrine tumors and the study considered it a reasonable treatment after failure of platinum chemotherapy.
There are some trials at Dana Farber for NEPCa that will be recruiting shortly, but the chemo that was supposed to be a stop-gap until those studies opened up is working so well we're now talking about continuing chemo indefinitely in some form of maintenance treatment, assuming it continues to shrink those liver mets. I've since heard of some patients getting reduced chemo on an ongoing basis and living for years.
Moral of the story: It doesn't matter if the treatment is cutting edge or tried and true, if it's going to work against your cancer and your body tolerates it, you can get spectacular results. Now I just have to work on the durability of those results. Why folfiri? It would seem because I have a very experienced MO who doesn't specialize in prostate cancer and is willing to think outside the standard of care toolbox.
Awesome that you are able to find it and that it works for you! Definitely agree that treatments shouldn't be so rigidly adhered to and allow doctors and patients decide! Off label use should be available to those who "feel" it provides their best chance at treating their condition, something called compassionate care, unfortunately an area here in the U.S. we need to catch up on!
Chugach -- glad you are doing so well. My experience: As I was treated with radiation (and surgery) for a previous Lynch Syndrome cancer (rectal cancer at age 24) and cannot have effective surgery or EBRT for prostate cancer (Gleason 9) with lymph node mets diagnosed at age 52, I convinced my oncologist to provide keytruda as initial treatment for 18 months (including 3 treatments of ippi nivo) as I'm msi-intermediate with intermediate mutational burden. This was paired for six months (ending this past September) with ADT (firmagon) and brachytherapy also in September. I have been in remission since then with undetectable PSA (8+ months) and undergoing no treatment with testosterone recovering strongly. As far as we know, I may be one of the only prostate cancer patients given keytruda as an initial (sole) treatment).
Thanks for sharing- great to hear of other Keytruda success. Awesome you were able to go straight to immunotherapy, I asked about it early before my first cycle of chemo and I was told I was not sick enough to qualify?? I should have pushed harder for that option
Thank you for sharing your story. I was dx at 48 G9 with bone Mets. I thought I was a unicorn until I found this group. Keep up the good work, so happy you qualified for immuno therapy. The one quick lesson I learned was that the medical industry as it is, is not geared towards the best options first. It appears that the closer to death you get the better the options.
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