Next steps - choosing to do triple treatment at Mayo - five nodules are impacted. Worried about side effects of chemo - anyone have advice?

[Luvmyman]

prostate cancer in five lymph nodes after prostatectomy - we’re told it was a 3/4 - next 4/3 - now in nodules but not in bones. Going to do triple treatment - worried about side effects. Husband is worried about the impact to his quality of life. He is questioning whether the treatment is worth it.

[Tall_Allen]

Chemo is very useful when cancer is in bones or visceral organs. Not so much when cancer is only in lymph nodes:

prostatecancer.news/2019/02...

Consider instead whole-pelvic salvage radiation and 2 yrs of abiraterone and 3 yrs of ADT. Or consider this clinical trial:

clinicaltrials.gov/study/NC...

[Luvmyman in reply to Tall_Allen]

It is up near neck as well

[Tall_Allen in reply to Luvmyman]

In the PEACE1 trial, among newly diagnosed men, extra-pelvic lymph nodes were allowed only if they were larger than 2 cm on a CT scan. In the ARASENS trial, they accepted newly diagnosed men who had extra-pelvic lymph nodes if they were bigger than 1.5 cm on conventional imaging (CT or MRI).

[ron_bucher in reply to Tall_Allen]

Mark Scholz presented chemo to me a little differently. He said it would kill all the tiniest tumors anywhere in the body, and radiation would be needed for tumors that were too large for chemo to kill. He didn't specifically define "tiny" or "too large".

[Tall_Allen in reply to ron_bucher]

Chemo kills any rapidly growing cancer that is chemo-sensitive. There is no limit on size that I am aware of.

[OzzieJ]

I had persistent non zero PSA after RP. They did a PSMA and identified two small pelvic lymph nodes. My treatment was ADT (plus Apalutamide) for 2.5 yrs, chemo (docetaxel) followed by radiotherapy. I've just come off everything in the last month and my testosterone and PSA will be monitored every 3 months. My PSA is now undetectable and hopefully it stays that way for a while. I was 51 and in good health when I was diagnosed and I asked my onco to throw the kitchen sink at it and he did. Personally I didn't find the chemo or radiotherapy too bad but ADT ground me down and I was so happy when I was finally told I could come off it. It is a tough road ahead for your husband but with your support it is possible to come out the other side in one piece and hopefully with the cancer put back in its box. Best of luck.

[Luvmyman in reply to OzzieJ]

Thanks - kind of in a funk about all of this

[ron_bucher in reply to OzzieJ]

I had similar experience regarding side effects from triplet therapy of docetaxel/ADT/radiation. Chemo and radiation were very tolerable, but ADT turned an otherwise very active guy into a couch potato (not to mention the 20 pounds added to my waistline and loss of bone density). I stopped the ADT after 9 months and had undetectable PSA for another 4+ years.

[Woodstock82]

I was already metastatic when first diagnosed, with many distant lymph node mets and many distant bone mets. So I did not have surgery or radiation, I went straight to ADT and six cycles of chemo.

Chemotherapy with docetaxel (Taxotere) was not nearly as bad as I had feared before I started. I had many of the most common side effects.

The steroids before and during each treatment meant that I was wired that day and the next, and then on the third day my mood and energy crashed and I was miserable for the rest of the week.

I didn't get thrush or mouth sores, but my tongue did feel like it had been scalded for that first week after each treatment. There were significant taste perception changes, none of them pleasant. Some people chew ice during treatments to reduce the mouth problems. I like the theory, but I don't know whether it really works.

Nausea became more of a problem as treatments progressed. Ginger (ale, tea, candies) helped somewhat, but eventually I needed the prescription anti-nausea meds.

Neuropathy in fingers and toes built up over time. Some people chill the feet and hands during treatment. Again, I like the theory, but I don't know whether it really works.

Fatigue became a problem with the later treatments as well. It was an odd feeling when walking to have my knees wobble and my legs shake, but not be out of breath at all.

I had the expected hair loss. Body hair first, then scalp hair. What surprised me was when I lost eyebrows, eyelashes, and nose hair. It took a few months, but eventually it all grew back.

I didn't lose any fingernails or toenails. I am glad to have been spared that.

Chemo can be hard on the immune system. Mine held up pretty well, but some people get injections of Neulasta to prevent neutropenia. Be meticulous about normal hygiene and self-care to avoid any infections.

Week 1 starts great, then finishes awful.

Week 2 usually has gradual improvement.

Week 3 is almost back to normal. Then you get to do the cycle all over again.

It's a marathon, not a sprint.

[Hawk56]

I'll echo what healthunlocked.com/user/Woo... said with a few exceptions.

As TA says, there is some discussion about the value added of chemotherapy for low vs high volume PCa, especially when the clinical data indicates no bone or organ involvement. The alternative triplet therapy with ADT+ARI + WPLN radiation is the counterargument to taxotere.

I did triplet therapy in January 2016 after surgery and SRT. I had for lymph nodes, no bone or organ involvement. I did see several oncologists and urologists, they differed on whether or not to use chemotherapy. At one point, Dr. Kwon was considering adding an ARI but only if my PSA did not drop to undetectable in the first three months, it did, we didn't add bone.

I had more or less the run of the mill side effects from taxotere.

I lost my hair, it came back.

Some of my nails turned black and blue.

I did get the "metallic" mouth which somewhat impacted my taste.

One cycle I did get a rash, it went away.

I chose not to use a port, one cycle there was a slight burn where seems the taxotere may have "leaked" during the infusion, it went away

The cycles ran pretty much the same. First 24-28 hours after an infusion were fine as the anti-nausea drugs they used were keeping the side effects at bay.

Then would come the crash, usually days 3-5, maybe 6. Then for the next two weeks I would feel "fine."

I would go to the gym most days, went skiing with friends in Colorado, went to Las Vegas to see my daughter play in her college team's post-season conference basketball tournament, attended a concert...

I will say the fatigue was manageable, though cumulative. For whatever reason, it hit hard in week four to the point I could only do about 15 minutes or so on te indoor bike at the gym before stopping, taking a break, then doing another 15. One time I set out on a 20-25 mile bike ride and around 18 miles I had to stop, called my daughter and asked for her to come get me.

His side effects may vary from what I describe. I was in excellent shape going in, that may have played a role in my experience.

I would say to the extent possible, be active while on chemotherapy, do what he can, rest when his body tells him to.

Ensure he understand who to call during and after office hours when he has questions or issues.

Kevin

Clinical History

[Luvmyman in reply to Hawk56]

So - 9 years for you - thanks for the encouragement- saw oncology for first time today. I am hoping for strength to get through all of this.

[arete1105]

Originally I had radiation for my prostate cancer, and then a couple years later I had chemo. It had spread to bones and soft tissue. I was scheduled for 6 sessions of chemo. The first 4 were nothing, the 5th session got a little sketchy. So they scanned me and found the soft tissue responded well to chemo, but the cancer in the bones seemed to slightly increase in size, so I didn't get the 6th session, which I was glad.

Symptom wise my chemo was very tolerable . But it does take a toll on your immune system.

[Retireddoc]

I would give consideration to putting more weight on actual specialists at one of the premier medical centers in the world than what you read from laypeople on a cancer blog. People can certainly raise questions to ask your MO, but I am sure the expert has reasons based on science as to why they recommend a certain line of treatment.

I had triple therapy at Johns Hopkins for oligo metastatic disease several years ago. Still undetectable (although my anecdotal account is meaningless regarding your husband's cancer) off all treatment.

To address your question about the chemotherapy, my 4 Docetaxel infusions every three weeks weren't that onerous. I did have an episode of low WBC count which they treated successfully with medication.

Good luck to you both.

[Luvmyman in reply to Retireddoc]

Thank you - I am trying to learn all that I can. I appreciate your perspective as a doctor who has been on the patient side.

[Hawk56 in reply to Luvmyman]

I am not saying healthunlocked.com/user/Ret... is wrong but a word of caution.

When I had BCR, my urologist and radiologist wanted to do standard of care, Salvage Radiation Therapy to the prostate bed. Meanwhile, data was coming from Phase III trials that for high risk patients, a BCR often involved involvement of the pelvic lymph nodes. Mayo also had data supporting that .

I believed we should do radiation to the prostate bed and pelvic lymph nodes plus add six months ADT which is what the clinical trials said.

When I discussed this with my medical team, they dismissed it saying there was no long term data supporting it

When SRT failed, they admitted I was right.

Flash forward, my PSA is rising rapidly after SRT failure, I meet with the Director of Urology at a NCCzN Center for a second opinion. I discuss triplet therapy and using imaging such as the C11 Choline scan to locate where the recurrence was. He dismissed my thoughts, saying my clinical data didn't support triplet therapy. Instead, he would put me on mono-therapy, ADT.

I am somewhat sure had I gone that route I would have become castrate resistant and would have died.

Instead, here I am, the triplet therapy brought me 4+ years off treatment.

Certainly the training, education and experience of one's medical team must be respected. They are board certified and licensed.

We are not them but we too have done our homework. I am the 51% shareholder in decision making in my treatment. I value and respect my medical team's input, but...

Kevin

[MrBlueDot]

I agree with all here on fatigue and other issues. Eating is hard. I kept a diary of what I found to like and dislike as far as foods and drinks. The list will not be the same on chemo as off. I had previous chemotherapy for breast cancer, and the routine was two weeks (6 sessions)) for P.C. and three weeks (12 sessions) for BC. My best examples for: it took me 5 tests to empty the dishwasher, showers were dangerous and wore me out standing and washing. Walking to the dnd of the driveway to get the mail was a victory. I always got I V fluids a few days after infusions. Helped a lot. Accumulate some small victories you can build on and you’ll come out of it stronger. Now on daily Xtandi and monthly Lupron for four years. Both of these can take you down a couple notches. I’ll have a good day then won’t be worth much for two. Enjoy the sunshine when it breaks out.

MC

[petrig]

It is,worth it.After my 6 chemotherapy rounds(triplet therapy adt+docetaxel+darolutamide(Nubeqa):

"An excellent response to treatment is noted. The large lymph node masses, especially parailiac on both sides, have decreased to normal size. The most recent 52 mm lymph node on the right is now only 10 mm across, and the 41 mm node on the left has shrunk to 7 mm across. Milder para-aortic lymphadenopathy has also disappeared..".

[InqPers]

Yes, with no bone mets, I would definitely research and/or get 2nd opinion on the chemo. In my case I had 1 suspected bone met, so went ahead with triplet (incl docetaxel). My SEs were not terrible with chemo (weakness, moderate hair loss, low WBC). I had more long lasting SEs with the pelvic IMRT (the worst being mild lymphedema in my left leg). The ADT was the most challenging and as others have mentioned and wears on you over time. I had 24 months of treatment and happy to say in remission and off therapy for 1.5 years now, and have been feeling completely normal for several months now. Just the anxiety for my 3 month check-in/tests. All the best to you.

[AlvinSD]

I did it in 2022 as part of triplet therapy with darolutamide and am happy I did. I had one bone met and extensive lymph node mets. ADT has been, by far, the most difficult part of my treatment.

I was 52 when I had chemo and in otherwise great health. I was still able to walk 6-7 miles a day all through chemo. The week of my infusion was the worst. I got my infusion on Mondays and would feel lousy Tuesday evening to Friday. (Not horrible, just fatigue and body aches. I was still able to stay active.). Generally, by Saturday, I felt basically normal again and stayed that way until the next round.

Here is a link to a post where I described how it was in more detail and things that helped me.

healthunlocked.com/advanced...

[ron_bucher]

"...whether the treatment is worth it" - great question that only one person can answer after the fact.

To put it bluntly, it depends a lot on how many more years he plans to live before dying from something else. The more years cancer has to grow, the more time it has to become more aggressive.

The tricky part of deciding on treatments is nobody knows how bad the side effects will be for the individual patient until he actually has the treatment(s).

When I had my prostatectomy, my hospital roommate was in the process of dying from prostate cancer that had been diagnosed too late. I've seen one other person in the process of dying from cancer, and I'd like to avoid that route. So I don't lose much sleep over side effects. Also, if side effects are too bad, treatments can be discontinued (which is what I did with Lupron).

[GAdrummer]

To ice or not to ice during chemo is the question.

My husband did not believe in icing. Seven years later his QOL is very limited: he cannot enjoy eating without working taste buds, he cannot smell the roses or food, he shuffles as he walks because he cannot feel with his feet which affects his balance, and he has trouble dressing and writing with numb fingers. He turned out to be very susceptible to brain fog. The hair only partially returned.

Hubris or fear of looking "strange" has consequences.

[RoseDoc]

I would go with what your doc recommends. Mayo is one of the premier centers in the world.

I echo Woodstock82's comments. I did use the cold mittens,socks as well as the cool cap. I did keep my scalp hair and had only slight neuropathy in my hands which went away within 6 months. You do get a bit more fatigued with each treatment. Exercise is important.

You recover from chemo within a couple of months. The ADT, however, is another challenge. Fatigue and weight gain are my major issues. Keeping active, exercise does help with this.

Good luck with your journey. You are in great hands!