The Arm Saga continues...to chemo or not to chemo

[HikerWife]

Eric's nerve damage and pain from his chemo leak over two weeks ago has been pretty severe - he's on Cymbalta for the nerve pain, and it's very sloooowly improving. It also kicked his butt - he had been bouncing back from his 3rd round pretty well - until he wasn't and the nerve pain came on with a roar. Many days this week were spent in bed all day. With a quick consultation with Dr. Baca at Dana Farber, Eric decided to skip the chemo round that had been scheduled for this Friday (6/16). Disappointing for sure, b/c we had wanted to stay on schedule, and he had been doing so well thus far - no trace of neuropathy or mouth problems (ice, ice, baby!😜). We also have a week on Cape Cod in cottages planned for Labor Day week, and pushing his last round back gets uncomfortably close to that - 2 weeks recovery instead of 5. But it was felt that letting the arm calm down & heal a bit, and see how it responded to the Cymbalta, was the thing to do. He is terrified of worsening the situation and winding up with permanent severe pain. We are unsure whether to continue chemo at all.

So here are my questions: Have any of you skipped a round of chemo, and then continued? Did that affect your progress negatively? Have any of you been forced to stop chemo entirely after three rounds? How did that affect your treatment progress? ( I have a fear that doing so is akin to not finishing a course of antibiotics - you leave the most resistant bugs behind and they flourish). Have any of you had a chemo spill resulting in nerve pain, and if so, did the pain resolve entirely? And if you continued with chemo, did it cause the pain to recur or flare up again?

If Eric does continue chemo, it would be with a PICC line. We're having a f2f meeting with Dr. Baca at DF this Friday to pick his brain. But If any of you have relevant experience, I'd love to hear about it. Thanks so much.

[treedown]

Not there yet but some days it feels like it is right around the corner. So sorry but I can't heIp with your question. I hope he feels better in time for your trip to Cape Cod.

[HikerWife in reply to treedown]

Thanks. So sorry to read about your problems with xtandi...geez, these SE, huh? Good luck with it all.

[treedown in reply to HikerWife]

My MO was going to appeal to get me Nubeqa but changed his mind and looks like its back to Zytiga. Best to you and your husband.

[K-xo]

Has he used the same arm for all infusions? My hubs has switched it up each time. Wish I had medical advice for you, but I don’t. I do however get your concern w/ skipping a round of chemo. A question I would def bring up w/ his MO.

Best

[HikerWife in reply to K-xo]

Talking to MO is the plan. Eric used same arm for all infusions - hadn't had trouble until this one. Didn't want to use dominant arm.

[Max135]

HikerWife (first love your nametag)... in the past hiking to some of the most beautiful places on this earth was my lifes mission and nothing made me happy more than hiking from sun up to sun down. As for your request on chemo, rest easy in knowing that skipping a round or maybe just a delay is going to have very little effect on (overall survival) OS. Note the chemo dose is calculate based on weight so maybe just a lower dose. Clinical trials have shown six rounds of chemo for advanced disease does extend OS but as to the timing of the six rounds everyone seems to do it early and I was one of those guys. Since the first six cycles of chemo I have completed another 27 rounds and was able to hold my disease progression for 2.5 years. Called it my maintenance plan.... was able to do some amazing trips during the same time. Docetaxel has been around a long time so you can arrange to get an infusion in any number of cities or towns.

Of course over the years I have learned much about how my body handles docetaxel and cabazitaxel. I have found a number of small but effective things to help with the fatigue (3-6 mile hike after infusion), chemo crash (2-4 days of extra dexamethasone) and constipation (1/2 cup of warm prun juice after the infusion).

Lastly the accident of missing the vain and this is a big one. Never settle on a tech/nurce that is new. Ask questions on how much experience the person has, allow for one or two tries but after that get a more experienced nurce. You can always ask for the use of an ultra sound device to make sure the needle is in the vain or you could go one step more and get a port installed. Personally I have never wanted a port because of hiking/backpacking and where the port is installed plus every second of every day I would have a reminder of cancer.

Sorry for rambling on... hope you can find something useful within this lengthy reply...

Ken

[HikerWife in reply to Max135]

Thanks, Ken, a lot of great feedback there. Thanks so much for taking the time. This whole thing was a 'perfect storm' - a relatively inexperienced nurse (she's had trouble every time, rounds 1&2 she turned it over to another person. Round 3, she 'succeeded' the first time), an unnecessary liter of saline (which nobody told us tended to cause leakage - found that out from a friend who is an oncology nurse), and Eric himself didn't speak up when he felt some burning at start of chemo infusion for the first time ever (I had already told him months ago to SPEAK UP if anything feels weird or different....I can only roll my eyes that he didn't). So plenty of blame to go around. If we continue chemo, he will get a PICC line inserted, which will remain in until he's all done. As for the hiking - it's my sanity, lol. I get out as often as I can locally. I love it!

[Max135 in reply to HikerWife]

Hang in there.... for absolute SPEAK UP. Almost all treatments can be adjusted to deal with an AE. After all these doctors are doing the best they can so it's important to pick one that is very good and one that keeps up with the new treatments. If your doctors an oncologist it's best that he is classified as an genonc...Be well...

Oh the hikes will be good for Eric during all treatments.

[MateoBeach]

Docetaxel chemo has been shown to extend survival on average (mean) by some months in metastatic PC. However, it is not curative but suppresses growth while also selecting for resistant strains. So, to me it appears the equation is to accept some months of the burdens of chemo in exchange for perhaps some months at the end stage.

Perhaps not much is lost by taking a break from it now and reserving effectiveness for a later stage. Worth considering and discussing.

The antibiotic analogy is not actually relevant since a specific number of chemo cycles at whatever timing and dose is not curative anyway. Only worthwhile if it is reasonably tolerated and provides a meaningful slowing or remission in growth and progression.

If it were me I would take the Summer off and revisit after Labor Day

[HikerWife in reply to MateoBeach]

Lots of good food for thought, thank you! We're going to Boston tomorrow to consult with our MO at Dana Farber & try to get some more info to add to the pile.