I am on Orgovyx and Nubeqa, recently completed brachy therapy and will complete 5 sessions of HBRT. Even though I am Stage 4 ogliometastatic, my one oncologist thinks this is enough (only two bone mets and two lymph nodes, both very local). He does not want to over-treat as the side effects of chemo are significant. My other oncologist (Mark Scholz) recommends adding docetaxel to really take care of anything else that could possibly be floating around in there. Since I am young (52) and in excellent health and shape, I am inclined to muscle through while I've still got the muscle and mental fortitude. I know there is no crystal ball, and there could be permanent damage (neuropathy, etc), but also want to go after this with everything there is!
So, on the one hand, I'm asking for your personal experiences, pros and cons, regrets and reliefs.
On the other hand, any data you know of that shows actual numbers in favor of or against adding chemo for someone with low and local (as opposed to high and distant) metastasis.
Thanks!
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KMY28
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Yes, that is the medical advice I am getting, that the best order for me is ADT then radiation then chemo in quick succession. I'm being told that starting chemo right after radiation is the ideal sequence in my case.
I didn’t see if you’ve had a PSMA PET/CT scan or how your lymph node and bone metastases were identified, so I don’t have a complete picture of your situation. However, considering your age, a Gleason score of 9, and a low PSA level, I would lean towards recommending chemotherapy. I underwent chemo myself and, while I do experience some neuropathy in my legs, it doesn’t stop me from maintaining my daily exercise routine. I’ve just entered year 8 since my diagnosis.
Thanks for your reply. Yes I had a PSMA PET/CT and the spots are very local as opposed to having travelled. As for neuropathy, did you do the whole ice cap and gloves and socks and all that? Did any of that seem to make a difference re: hair loss or neuropathy?
Its too late for docetaxel. You only get a benefit from it if started at the same time as Nubeqa. Chemo only kills actively growing cells, so you've missed your window of opportunity. Nubeqa, after a couple of months, causes cancer cells to morph into a senescent state (your PSA is probably undetectable already), in which they are no longer vulnerable to chemo.
"Still learning..." Me too. I'm going to go the triplet route, as I have had less than a month of ADT, with nothing else but the SBRT. Have I got that right Tall_Allen? My cancer should still be vulnerable to docetaxel, if all I have had is a month of ADT?
Neither of my doctors have said it is too late. In fact, the opposite, saying this is the right timeline and sequence for me. I just need to decide if I want it.
Both the TITAN trial of Erleada (apalutamide) and the ENZAMET trial of Xtandi (enzalutamide) showed no benefit for the advanced hormone therapy when docetaxel had been used previously. Timing is important! When chemo or advanced hormone therapy is used previously, protective mechanisms (like cellular senescence) kick in soon afterward. It protects the cancer cells from destruction by the other medicine. They have to be used together or wait until the first drug stops working.
I’m in similar boat as OP. Age 55, de novo Gleason 10, stage 4 with Mets to bladder, localized lymph nodes, and possibly small Mets in bone in pelvis and spine that are now gone from Xtandi and Orgovyx.
Just completed course of IMRT at Duke (Dr George is my Med Onc). Did FDG PET/CT combo post IMRT and no current evidence of Mets.
No plan for chemo at this time. Next follow up is in mid February. PSA remains at .001
Glad to hear, I've been pondering if I should push for my dad (65 - Gleason 8 - 2 small bone mets in spine) to do chemo since he just started Nubeqa in conjunction with the Eligard he started a couple months ago. He just finished SBRT to both spots last month and we'll see where his PSA is at later this month. I don't want to miss any best shot we have of keeping this in check long term.
I was 55 when I did docetaxel shortly after diagnosis. It wasn't fun but it wasn't as bad as I expected. Plan ahead to take time off work after each infusion. Days 3 to 5 after your infusion are the worst. I was mostly bedridden from lack of energy. I wore ice gloves during infusion to protect my fingers. Neuropathy in my toes disappeared after a few months. Some body hair did not grow back but my head hair all came back.
Docetaxel really knocked my cancer down. PSA dropped to undetectable. Bone lesions became invisible on scans. I'm living well 6.5 years later.
I believe the science says that docetaxel is more effective the earlier it is given. Plus you are healthier now than you will be in the future and are best able to handle the side effects now.
Really good info, thank you. I'm very lucky to have a flexible work schedule. Yes, the earlier the better for docetaxel, which is why I feel compelled to make a decision soon.
I won’t make any recommendations but I’ll tell you my story.
I’m a low volume stage 4 like you. I did docetaxel, and am on lupron and Nubeqa. About three months after I finished chemo I did EBRT. The last time I was imaged the radiologist said they saw “no active disease”. My PSA has been undetectable for a little over two years. My ADT side effects have been minimal. My worst and only ongoing side effect from chemo is moderate but tolerable neuropathy in my feet. Since the cancer essentially destroyed my prostate I can orgasm but I don’t ejaculate.
Overall, I’m glad I made the treatment choices I did. I started at 63 and chose what I did because I felt like I was young enough and otherwise healthy enough to tolerate it.
I was dx in 2014, I was very close to your age with multiple mets throughout my skeleton and a couple nodes. I was very reluctant to get early chemo per CHAARTED, but eventually I came around to thinking that I’d better give this everything I’ve got.So I went ahead with chemo and it was the toughest treatment I’ve had over the past 10+ years. But I got through it and I’m still here and doing well despite being given a sentence of 3-5 years initially. You can read my profile to see what else I’ve done.
Majority were temporary, neuropathy lasted a few years and still flares up now and then during exercise. Nothing horrible, just annoying and may limit the length of activity. The side effects during treatment were pretty rough though.
Agree with Dr. Scholtz, so long as you only recently started ADT.
Taxotere is usually 6 doses three weeks apart. I recommend using the cold mittens and socks to prevent neuropathy. I had slight neuropathy even though I used them but it resolved in 6 months. The cold cap works if you wish to preserve your hair. My eyebrows thinned and never grew back to normal. You are on a steroid high for about 24 hours post infusion, then crash on day 2. Post treatment days 2-4 are bothersome, then you start to feel better. By the end of the treatment course I was pretty washed out but continued to work. Takes a couple of months to regain the strength. Exercise is imperative!
Thank you. Barely 2 months on ADT and this was the prescribed timeline. I appreciate your advice, especially regarding off-setting neuropathy and hair loss as much as possible. Can I ask what kind of exercise you were able to do during treatment? I assume that also started to peter out.
I walked and did weight training. AS time went on, just walking and then had to stop along the way. After the 4th round of chemo, I became increasingly fatigued.Fought through it. Took about 2 months to recover and several months after that to regain strength. It isn't so bad, effects accumulate with each dose. Important thing is to stay active, do strength exercises as much as possible. My PSA has remained undetectable since the 4th treatment, which was 20 months ago.
Man, I'm really sorry to hear this. I know all these posts can cause huge mood swings. At least that's been my experience. 'Hooray! Everything's gonna be ok!" to "I feel well and truly effed." Keep in mind these are just posts of guys sharing what's going on and asking questions. The bottom line is ALWAYS consult with your doctors, and if there is something that doesn't seem right or your disagree with, then keep getting second opinions. I find this forum helpful in formulating which questions I want to ask my doctors. Otherwise, keep in mind, this is still the internet! But I am sorry to hear about the stress of your numbers. Such a feeling of helplessness, and yet, look at what you're doing! You're still going after it with all you've got. Sending support and effing strength!
Hey, hope your getting better, and metastasis is off course quite serious, but great not you will beat this. Your body is now fighting on a cellular level, your DNA is not being rewritten fast enough to prevent inflammation from the cancer cells, however you know what hairball when you starve cells right? They die, you must delete sugar from your diet and all processed foods, they feed your food and bad cells friend. I know it's tough but u must be diligent, I know because I went through this and happened to diet like this when I first knew I had PC, you've gotta take its energy source away. Veggies fruit and lean protein, and of course reverse osmosis water. Try it, you'll get some relief at the very worst. Cheers.
All good! And yes, I immediately added a nutritionist to my team and am abiding by a no sugar, no gluten, no dairy, no red meat, and of course no process foods. Never felt better, which is the irony in all this!
In so glad to hear that, and I do chest every once in awhile, but freaky once in a while though. I know most think that holistic out natural diet is a bunch of hokey, but any doctor or clinician worth their salt Will tell you that it works. It's no secret anymore that fda and big pharma wants us as customers for life dependant on drugs that mask and temporarily relieve symptoms and not cure the mineral or vitamin deficiency. Bravo friend bravo.
My sequencing was ADT + darolutamide then (at about six weeks after starting ADT) six cycles of docetaxel. After a six week break, then 28 EBRT treatments (prostate, pelvic lymph nodes and my one bone met). The ARASENS study used a timing of six weeks post ADT for starting chemo.
For those who are interested, here is a link to a post I wrote with tips on what helped me during chemo.
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