neuropathy or carpal tunnel?

Jan, I hate to hear this.  How long were you on the drug?  For it to be 9 months ago and have these side effects is concerning.  Not being able to sleep through the night due to the pain means you never get a break!  I hope they can figure something out to give you some relief.  

jan9wils said:

I am going to try acupuncture

I am going to try acupuncture. Thank you for the suggestion.

I found an anesthesiologist who did it at the pain center affiliated with my local hospital b

My neuropathy came on suddenly about a week after my second chemo. It was really bad in my feet and both hands were numb and tingling but no pain. The feeling came back in my left hand and three fingers on my right but my thumb and index finger are still numb and it's coming up on five years. The pain in my feet is awful and it seems to get worse around midnight so I spend some of my nights just walking around the house - the pressure stops the pain. I have tried everything but nothing has provided consistent pain relief except oxycodone and lorazepam but I kept having to take more and more and I don't want that. I'm glad I'm retired so I can sleep during the day if I have to.

I sure hope you can get some relief!!!

Love,

Eldri  

Jan, if it should prove to be neuropathy, I can recommend acupuncture from my own experience. I had early and severe chemo induced peripheral neuropathy in my hands, starting with the second chemo, and later also in my feet. My brilliant, wonderful gyn/oncologist was ready to switch me off taxol to a related drug with much worse side effects out of concern that I might be unable to use my hands at the rate the neuropathy was going if I stayed on taxol.

He and my nurse practitioner recommended acupuncture as an intervention for which there was some data on use for CIPN. I started acupuncture twice a week about the time of my third chemo, and it reduced the neuropathy symptoms enough between chemo rounds that I was able to stay on taxol. I ended chemo in January and am still in acupuncture twice a week to manage the pain, which is now exclusively in my feet.   

What most concerned my doctor about my hands was that I couldn't use them normally starting after the second chemo. He noticed that I'd dropped my reading glasses and picked them up for me, and just a few minutes later, they were on the ground again. Thank  goodness he noticed, because I had not. I think I was still so stunned by the diagnosis and so freaked out at the idea of chemo, that I wasn't able to pay attention to something as obvious as my hands not working normally. At first I wasn't able to tell if I had a grip on objects, and then pretty soon, I couldn't pick things up or manipulate small objects. By the time I started acupuncture, there was a lot of damage done that may never "heal" in terms of the damage being undone. But with the twice a week acupuncture, the pain and horrible numbness/tingling -- which had gotten almost unbearable following my sixth and final chemo -- became increasingly manageable.

In terms of function, OT made an enormous difference in my hands. When I started right after chemo, I could barely write, I couldn't pick up a coin, and I was breaking glasses and dishes pretty much every day. I finished OT last week (much of it virtual), and all of those problems no longer exist. I have exercises that I continue to do to increase my hand strength and reduce sensivity.  I'm still in PT, working on my balance, which is subtly off from the neuropathy damage to my feet.

I didn't try gabapentin, as my doctor didn't think the evidence was good for CIPN but I did try cymbalta, which the American Society of Clinical Oncology recommends in their guidelines for CIPN.  For me, it was worse than useless, as it didn't work for the pain -- at all -- and woke me up every hour or so all night long. Lots of people have success with it for CIPN pain, though. I stopped after just six weeks because of the night-waking insomnia, as six weeks should have been long enough to see some improvement if there was going to be any.

In addition to the B vitamins, which I take also, I wonder if you've tried alpha lipoic acid? My oncology nurse practitioner recommended it as something worth trying, again with the qualifier that there was not a lot of data supporting its use. (We were trying pretty much anything for which there was any hopeful data because of the early onset and severity.) The center where I received care did not offer the cold mitts, but I tried them on my own. They don't seem to have helped, but perhaps it would have been even worse had I not used them.

My doctor anticipates, based on the early onset and severity, that I will always have some degree of neuropathy, but just five months after my final chemo, the pain is almost always mild enough to ignore. I discovered just last week, when my acupuncturist was on vacation, that I still need the acupuncture, as after about 10 days without it, the pain in my feet was almost unbearable (very much like Eldri describes), so much so that I decided this week to get a medical marijauna card. My doctor recommended it as something many of his patients found effective for CIPN, but I kept hoping that I wouldn't need it. I've learned that the people who work at the dispensaries are really knowledgeable about various strategies for CIPN, and I will probabably get some patches for my feet to have them available should I have a severe flare up like I did last week. Is that something that you have tried for your hands?

I hope there will be a lot more research on CIPN, as it is such a common side effect. In the mean time, I hope you are able to find something, or some combination of things, very soon that reduces the pain to a manageable level.

Molly

The other thing that has been helpful for both my hands and feet

jan9wils said:

Thank you everyone, for your

Thank you everyone, for your experiences and thoughts. I have found one dr nearby who does acupuncture but my insurance hasn't approved it. It is abou $100 per session so I'm not sure I can afford it.  I am going to wait until I see the neurologist on the 22nd and see what she has to say.  In the meantime, I reached out to the study doctor to see if its possible this was related to the study drug.  She has not responded. I am not too happy with this research center. Once I was no longer participating in a study they've pretty much dismissed me

Unfortunately my insurance didn't cover it either. I still had them submit it because I thought they should cover it. Maybe you could space it out and ask for a cash discount. If it helps it would be priceless. 

I'm sorry you're experiencing this, Jan. Did you ever hear back from the study doctor? I sure hope they took the time to respond to you. And did you end up trying acupuncture?

I managed to avoid neuropathy in my hands and feet, maybe because I iced the heck out them during infusions, but I do get these out-of-the-blue terrible pains shooting around various parts of my body. Every now and then one starts in a foot and shoots up my leg, others run down an arm or up my side or across my lower stomach. They're enough to make me yelp, but then they're gone as fast as they arrive. I asked my onc if it's neuro damage from chemo and she just kind of shrugged and said, "Could be." One kept happening so much in a two-week period that they moved up my PET scan by a month and half, since the location was in my stomach near where the vaginal cuff is. But everything was still clear, NED.

Tamlen

jan9wils said:

Excellent news about NED! 

Excellent news about NED!  The study doctor has not responded to my calls or emails.  I think she has written me off since I'm no longer in a study and I refused the small pox injection study and opted for surgery instead. I find it unethical. I met with a neurologist who upped my gabbapentin and remarked that B6 can cause these symptoms if too much builds up in the system.  I got the blood results yesterday and indeed I have way too much B6 so I'm not taking that.  She also recommended a course of supplements which I am ordering from an online source. in the meantime she wanted to do some brain mapping. I just finished those tests and will meet with her at the end of the month.  I do want to try the acupuncture but the doctor I contacted, they want $$$ up front and I don't have it right now. So I'm saving up to try that.

Fourth of July will be unobserved by me as I'm self-isolating again after being exposed to COVID. I do not have any symptoms so that's good. My 14 days will be up just in time for my granddaughter's 4th birthday!

Jan9wils, I hope it turns out to be too much B6. I know that too little of certain B vitamins is implicated in chemo-induced peripheral neuropathy and so is too much, so I worry that I may be taking too much. I added quite a bit more of various Bs after my chemo was over to help with hair regrowth, but since there is so much that isn't known about preventing and mitigating the effects of CIPN, I'm concerned that I'm not getting it right.

Given that so many chemo survivors of all kinds have debilitating CIPN, one would think there would be many, many more studies.