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MO wants to cut back dosage on last cycle of Docetaxel

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Posted 3/24/2017 7:49 PM (GMT 0)
Spoke with my MO yesterday when I was in for my nadir check . My PSA has reached 0.01. Yay! I'm also having neuropathy in my fingers and feet.What has me concerned is he wants to cut back my final dose because of my profession as a goldsmith and the fact that I work with my hands. I expressed that I really don't want to do that after going through this this far. Before the question of reducing the dose came up, I had asked him if the neuropathy would be permanent. He said no. I said good because I'm a goldsmith. That's when he suggested that we cut the dose.

I'm wondering if cutting the final dose back will make that big a difference? It seems that SE's have been cutting into my treatments this whole journey and it gets pretty frustrating. I don't want partial treatment.
That's how I felt when Brachy was taken off the board because of SE's. Yet.... this is my profession....

We left it open for now. My final cycle is in 2 weeks so I thought I'd ask for the wisdom of the brothers here.
I must say that this chemo has been tough on me. Crash days 2 days after and then has me knocked down for the remainder of the week. I have lost my sense of taste. I have broken out in rashes and I get bad bone and joint pain from the neulasta. Constipation immediately after treatment then diharea at about the 5Th day. I'll be glad to be on the other side for sure but don't regret the choice I made to do it.

Battle on brothers!

The Artistic One- Mark
Posted 3/24/2017 8:20 PM (GMT 0)
Way to go Mark!

Regarding a reduced dosage on last round of chemo, I do believe the correct answer to your question of the neuropathy being permanent is "sometimes yes"- sometimes it can fade after years from my reading-

I of course only managed four rounds due to skin toxicity; skipped fifth, my skin improved, they would have given me one more round on the scheduled sixth cycle date by my choice, but they did not want to. I was experiencing increased neuropathy in feet and especially left hand- my fretting hand; fear of losing the activity that will keep me sane in the days to come, I bailed on last round per Drs wishes-

do I regret it? maybe. but then, cure was never an option, and weighing probably a bit more time against loss of music- I gotta go with protecting QOL, cause I am still pretty sane for now.

a tough choice, but whatever you choose will be right for you.


yes, but not today....

rf
Posted 3/24/2017 8:30 PM (GMT 0)
A good question to ask. Some neuropathy can stick around for quite some time. I still have reduced sensation in most of my fingertips and toes, as well as under balls of my feet from chemo (for Colon cancer) in 2015.

It may be that the chemo for prostate cancer does not quite have the same effects or longevity of effects. Since you rely on fine motor skills etc for your job, I'd make sure about how long it might be an issue, and to what extent.

D
Posted 3/24/2017 8:35 PM (GMT 0)
Mark,
My experience with chemo included neuropathy in my foot that continued for a while after I ended treatment. For the most part I believe that I have recovered although to this day the area of my foot still feels a little strange. Getting a reduced dose may make your treatment less effective but on the other hand you have had a remarkable response to chemo. I guess the big question is if whether the side effects are impacting your profession and if more side effects will make a difference.
Posted 3/24/2017 10:17 PM (GMT 0)
Have you been holding ice packs in your hands during the infusions?
Posted 3/25/2017 12:21 AM (GMT 0)
Allen... I asked for them and they looked at me like I was crazy. They had never heard of that. Made me wonder. I did ask for ice chips to suck on and finally one nurse said , just get him some ice if he wants it. The ice for my tongue hasn't seemed to work, so....I'm not sure if it would help my hands.
I've heard mixed opinions on this subject.

Thanks for your responses. After working today, I'm leaning towards letting him reduce the dose.

Mark
Posted 3/25/2017 12:43 AM (GMT 0)
Mark,
Did insurance pay for the chemo? Just curious since your PSA was .02 (undetectable) before chemo and it brought it down .01 to .01. My insurance would never pay for treatment if I was at a stable undetectable level...I have problems getting them to agree to treatments even though I have never had a PSA the same level twice and my lowest has been .17. They said they will not cover anything until my PSA rises to .20 above nadir (Phoenix study) so if there's something I'm missing I'd appreciate any info you have.
Posted 3/25/2017 1:35 AM (GMT 0)
Highlander,
Not sure except that my chemo is adjuvant treatment in combo with IMRT+HT. It is an approved treatment recommended for high risk PC by NCCN. That's the only thing I can think of.

Mark
Posted 3/25/2017 1:49 PM (GMT 0)
Mark,
I completed my 4th yesterday at 75% dose. As Tall Allen mentioned I have also been bringing gallon ziplocks filled with ice for my hands, put in a small roll along cooler (I am sure the folks on the elevator took a second look), and packed with 5lbs of dry ice . Used a commercial foot gelpack for feet. So far no neuropathy. I have some fatigue. After the first two treatments I had nasty "Taxotere Rash" on my back. After each treatment my throat and tongue loaded with a sensitive rash. Some fatigue. Loss of sense of taste for 10-11 days. Even ended up in isolation at local hospital when wbc fell to .9 (should be around 6 - 11). No Neulasta after treatment. Now I remind them. Bone pain is there, but better than 2 - 3 days in hospital.

I mentioned all this, and other issues, to MO who cut my dose to 65%. Explaining that I did not "metabolize" as well as some. Will wait and see.

I did read an article that indicated 86% of those who start the six treatments complete all 6. MO said it may be a little higher.

You may want to consider ice and gelpack for future treatment. There have been trials done on them. I particular for hair loss.

Wishing you the best.
Bill

Post Edited (mr bill) : 3/25/2017 7:57:10 AM (GMT-6)

Posted 3/25/2017 4:21 PM (GMT 0)
Sorry you are having these issues... I wish they would have given you the ice packs or recommended you to protect from neuropathy. If you have the last treatment, do yourself a favor and have ice packs on hand, for your hands. Lowering the dose should still give you the same systemic effect. I lowered my last dose as I was having issues with my bowels and my MO didn't want the treatment to exacerbate the issue. I also know of several other guys at my MO office who are having adjuvant chemo with 4 cycles as the MOs in that office believe that is just as effective as 6. Either way, you have a tough decision between your cancer curative rate and your profession. I wish you luck on your decision and treatment journey. -JR
Posted 3/25/2017 6:03 PM (GMT 0)
Just an afterthought. The mo who treated me at local hospital for low wbc, and did his fellowship with my regular MO at clinic, told me that you receive 80% of benefit with first three infusions. I asked MO at clinic, his reply was "that's debatable."

Just wanted to add that for what it is worth.
Posted 3/25/2017 7:49 PM (GMT 0)
Thanks guys,
Jr, I'm only doing the 4 treatments so I'm encouraged to hear that some MO's think that is just as good as 6. I'm also having a terrible time intestinally. Figure it's from the radiation. I hope that gets better. I have always had small intestine problems ,in fact down the line a few months I will need to go back to Seattle for another endoscopy procedure to check that tumor in there.
Bill, also encouraged to hear that your MO said 80% of benefit is received by first 3 infusions. I never asked mine why 4, but that now makes sense that he must think the same. Also ,my throat and tongue get sore and my taste is really screwed up. Too late for the hair loss but I don't mind.

I will surely be glad when this phase of treatment is complete. It has been the roughest so far.

The Artistic One - Mark
Posted 3/25/2017 11:39 PM (GMT 0)
Mark,
Same here with throat and tongue, runny nose, watery eyes, rash, etc. Not too mention muscle and joint pain from Neulasta. I would certainly check with MO re: 80% when making a decision. No it is not a walk in the park for some guys. Others sort of walk right through it.

Best wishes,
Bill
Posted 3/26/2017 4:16 AM (GMT 0)
Mark, thanks for sharing your journey. I'm very interested in your adjuvant chemotherapy. I looked, but couldn't find reference to it in the NCCN guidelines. I'd like this treatment as an option for my husband but his physicians seems to be very straight and narrow regarding standard of care. So far, I can only find a phase 2 study in the literature.
Any chance you might have any links?
Thanks so much
Posted 3/26/2017 6:28 PM (GMT 0)
Mark,
Listen to MO. I insisted that we continue with full dose in spite of test showing no effect. I am now suffering from burning in my finger round the clock. Meds do not help much. I had a very rough time and a still facing continuing side effects six months later. Should have stopped after fourth dose like I started to when PSA showed no decline.

Cut the dose. You will not be able to do meticulous work. I can barely hold a pen or type.

Best to you
Don
Posted 3/26/2017 6:32 PM (GMT 0)
Here is where I found the NCCN guidelines for High risk PCa initial treatment.
http://www.tri-kobe.org/nccn/guideline/urological/english/prostate.pdf Hope this helps Mark
Posted 3/27/2017 12:43 AM (GMT 0)
There's a later version of the NCCN Guidelines, Feb 2017 now.

They still show docetaxel after EBRT+ADT, following the radiation therapy, but it's now a footnote, for what that's worth. "...in selected patients who are fit for chemotherapy."

It's not clear why they changed that. Just FYI.
Posted 3/27/2017 1:59 AM (GMT 0)
Thanks Don. I had made my mind up to listen to the MO. Was still running it through my mind but hearing from you has me convinced.
Redwing. I'm not sure I saw that so thanks for the info. I want to be current on any info I may give out. Glad they still list it. I'm sure that there at those that would not qualify for this treatment as it it quite tough.

Mark
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