Newly diagnosed with Advanced PC

Posted by majark @majark, 2 days ago

Well, maybe not newly. Back in Spring. Found in checkup and PSA tests. It was in places I wish it were not, and would be S4. I'm 68 year old male. I was put on ADT (Orgovyx and Nubeqa) which I have tolerated well for last 2 1/2 months and has good results re: knocking PSA #s way down. Next up, in another couple weeks will be an addition of 6 cycles of chemo to the ADT, specifically docetaxel. There is also possible clinical trial my oncologist is running that adds some radiation to that, but that would not start until a couple chemo cycles.
I've reached out to these boards 6 years ago when a family member was going thru a different type, and they were helpful. So here I am again, this time for me.
I'd like to get a second opinion from Mayo via telehealth, or a call. I did that several years ago, but don't recall procedure. I looked at website and wasn't sure of the link to use. Any help appreciated.
Lastly, for anyone who has gone thru this, I'm curious as to the docetaxel side effects. I've read all about them but wondering whether these are cumulative, and get worse in the cycles, or any other insight
Thanks

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Hi...Sorry you had to come back. Sounds like we're heading in the same direction at the same time (except I'm a year older). I've been on Orgovyx and Nubeqa for 2 months. Mets in lymph system in pelvis, abdomen, thoracic cavity and bone at L5. I'm scheduled for IMRT at the end of Sept. but no mention of chemo yet. Do you have any organ involvement that would trigger chemo right away? Sorry, I can't help with your docetaxel question.

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Unfortunately, you have supplied us really with no information.

Everyone is different. What is your Gleason score? What was your PSA when you were biopsied? Have you had a decipher score? Have you had a PSMA pet scan, what did it show? What was your PSA at diagnosis?

How many metastasis did they find after the pet scan?

Did you have intraductal, cribriform or SVI or extra capillary extensions in the biopsy?

All of these are major treatment issues.

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I'm stage 4, metastasized to the bones and a couple lymph nodes. About 18 months ago I finished up 10 rounds of chemo. I had good days and some not so good. Actually I had a problem with first two sessions, they changed up my prep and the rest were okay. It's almost a blur thinking about it now. Everything slowed down for me. The biggest so called problem for me was eating. Everything tasted bad, even drinking water. I want to say, you can do this. I continued to work at the time and my job kept me on my feet. Keep good attitude, stay positive and carry on. I wish you the best on your journey. Best to all.

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Good luck with the chemo. I just had 3 out of the 6 cycles. Taking Lupron and Nubeqa as well. This may be off the beaten path too far, but for each cycle, I am doing the 5-day Prolon fasting mimicking diet (4 days before and the day of chemo), which is supposed to lessen chemo side effects and possible enhance results. Prolon was created by Dr. Valter Longo as a non-profit company. He also wrote the books The Longevity Diet and Fasting Cancer, which has a couple PC case studies in it. Check it out if interested. I have not had any mouth sores, feet or fingers issues, nausea, etc. My worst side effects were losing 85% of my hair, but I am grateful for what I have kept, and fatigue for about a week after each session. Although I think the fatigue is magnified a lot by the immune shots I take for 5 days after each infusion (I have low white blood cells and my insurance company would not pay for the single, more common shot).

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Good luck with the chemo. I just had 3 out of the 6 cycles. Taking Lupron and Nubeqa as well. This may be off the beaten path too far, but for each cycle, I am doing the 5-day Prolon fasting mimicking diet (4 days before and the day of chemo), which is supposed to lessen chemo side effects and possible enhance results. Prolon was created by Dr. Valter Longo as a non-profit company. He also wrote the books The Longevity Diet and Fasting Cancer, which has a couple PC case studies in it. Check it out if interested. I have not had any mouth sores, feet or fingers issues, nausea, etc. My worst side effects were losing 85% of my hair, but I am grateful for what I have kept, and fatigue for about a week after each session. Although I think the fatigue is magnified a lot by the immune shots I take for 5 days after each infusion (I have low white blood cells and my insurance company would not pay for the single, more common shot).

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They make ice caps, even Amazon sells them, to protect your hair from falling out while you’re having chemo. You have more sessions so maybe we can get one to save what’s left.

You may need to get two because they warm up while they’re on the head so it’s better to swap another one in while you’re being treated.

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Thanks Jeff. My oncologist is against the ice caps. She said that she has seen cancer spread to the brain/head and that the ice caps can prevent the chemo from working up there. She may have been tainted by other cancers and not PC since she is not a urologist, but I wanted to be safe.

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My husband had six cycles of docetaxel some years ago when his metastases increased too quickly and in too great a quantity to keep chasing them with spot radiation. The first thing to know is that your husband's side effects and quality of life will likely fall into a predictable pattern, so that you can plan which days and weeks he won't feel well and when he will start feeling pretty good until the next infusion comes around.

For us, the first day after the chemo infusion he felt pretty good and energetic, due to the dexamethasone he received with the docetaxel to tamp down side effects and allergic reactions. But the rest of that first week, he felt exhausted, and food and drink and even water didn't taste right, and some of it tasted like metal or chemicals. **NOTE An important warning: at the end of the first week after the first infusion, my husband's white blood count plummeted, and he spiked a fever. We had been told to go to the ER immediately if this happened, which we did. He had developed febrile neutropenia from the chemo, which is somewhat common. Injections of Neulasta fixed him right up, and after that episode, he got a Neulasta OnPro put on his upper arm after each infusion. It injected the medication 27 hours after the chemo infusion and kept his white blood count stable. Our insurance didn't pay for the Neulasta until after my husband had the febrile neutropenia crisis--Grr! So be alert for this development in case your husband doesn't get the medication automatically starting after his first infusion.

The second week after the infusion, my husband felt a bit better every day, and the third week after the infusion, he felt good and we were even able to take day trips in addition to his regular chores at home. Then the next infusion came at the end of the third week, starting the whole cycle over again. This pattern let us know what to expect when and how to schedule his and our activities. I would say that the side effects didn't increase over the course of the infusions, except for hair loss. He lost all of his hair on his head and also chest and pubic area. Most hair has grown back but his curly hair is less curly than before the chemo.

All in all, the docetaxel experience was quite bearable and predictable--and it made my husband's cancer go into complete remission for quite a while! So it was definitely worth it. I hope this helps....

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