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neuropathy or carpal tunnel?

jan9wils's picture
jan9wils
Posts: 146
Joined: Mar 2017

About a month ago the neuropathy that I have had in my fingers suddenly became worse. Its in both hands and the pain and burning shoots up my arms. I often cannot use my hands for fine motor tasks. I cannot lift things, unscrew jars, etc. because I don't have enough strenght. I wake up in the middle of the night in pain.  I have neuropathy in my feet as well but that hasn't gotten worse.  I take gabbapentin, Vitamin B12 and Vitamin B6 for this.  I spoke to my oncologist who has referred me to a neurologist to be evaluated.  I see her June 22. He also suggested I contact the study doctor for the study I was in.  I haven't heard back from her yet.  In the meantime I'm really needing some relief.  Cold compresses help, I've ordered some compression gloves to see if that might help while I await my appointment.  Has this happened to anyone else?  My last chemo was two years ago. The study drug I last took about 9 months ago (it was an immunotherapy drug given through my port every 15 days). Any ideas what I can do to help with the numbness, pain and tingling?

Jan

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2841
Joined: Mar 2013

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's picture
jan9wils
Posts: 146
Joined: Mar 2017

I was on the study drug for 5 mos. I landed in the hospital for about a month as my immune system went into hyperdrive and started attacking my organs. I'm seeing Cheese Queen's suggestion of accupuncture and I am going to find a provider to do this.  It can't hurt!

CheeseQueen57's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

You might get some relief from acupuncture. Worth a try. 

jan9wils's picture
jan9wils
Posts: 146
Joined: Mar 2017

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

CheeseQueen57's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

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

BluebirdOne
Posts: 366
Joined: Jul 2018

Jan, so sorry to hear this. Your symptoms sound a bit like carpal tunnel, but I don't think it is that. There is a test they can do to determine nerve damage for CT. For me, it was due to arthritis, my hands/wrists were painful to use, could not hold a coffee cup but also had terrible numbness. Also pain at night. But it took several years for the symptoms to manifest. They gave me a hand brace to keep the wrist joint straight but it didn't help. I had surgery 3 years ago, but now my left wrist is gradually starting to go bad, too. 

Denise

EZLiving66's picture
EZLiving66
Posts: 1452
Joined: Oct 2015

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  

Armywife's picture
Armywife
Posts: 450
Joined: Feb 2018

Jan, I'm so sorry to hear you're having these issues.  I had acute onset neuropathy with chemo and had to switch drugs, and then amazingly it dissipated.  I'm just wondering if it's possible that you have a degenerative disc in your neck that might be causing this?  I have had issues with both upper and lower spine that are very similar - loss of strength, loss of grip, pain and numbness.  It might be worth checking to see if you have something compressing and pinching those nerves.  Blessings to you.  

Molly110
Posts: 182
Joined: Oct 2019

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's picture
jan9wils
Posts: 146
Joined: Mar 2017

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 meFrown

CheeseQueen57's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

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. 

Molly110
Posts: 182
Joined: Oct 2019

My insurance doesn't cover it, either, and my sessions are $85 each. I've had to prioritize it because I just didn't have a choice -- it was eiher drop out of chemo and die (my cancer was UPSC), take the drug with horrible side effects, or try acupuncture. I have curly hair that I used to pay to have blown dry straight every week, and that was one expense I didn't have during chemo and still don't have. : ) Also, an unexpected side benefit of acupuncture for me is that my lifelong allergies disappeared. I was spending about $80 a month on allergy drugs year round, and that is another expense I don't have. Still, it doesn't come close to the cost of the acupuncture. My acupuncturist is not an MD. I don't know where you live, Jan, but in my state in order to be licensed acupuncturist, it takes a lot of training and supervised hours of practice, unless one is an MD or dentist, and they can practice with no training in acupuncture at all. My acupuncturist is trained in oriental medicine and works a lot with people in chemo and post chemo. My primary care provider (an MD internist from India) told me that she thinks everyone being treated for cancer, but especially people in chemo, should be in acupuncture. It's horrible that insurance does not cover something that helps so many people. 

 

If there is a acupuncture school in your area, I know that many of them offer acupuncture at dramatically reduced prices by students under the supervison of a licensed teacher. (I only tried acupuncture because I was desperate. I'm needle phobic and not much of a believer in alternative medicine. My experience with it has been so positive that I think if I'd started acupuncture at the same time I started chemo I would not have the extent of the damage that I have. ) If you do decide to try it, it might help to know that, for me, anyway, there was no immediate response. It took three sessions over a week and a half before there was a noticeable effect, but once it kicked in, it continued to help with the existing damage and, we think (my care team and I) to limit (but not eliminte) new damage.

 

I hope the neurologist can tell what's wrong and has an easy fix for you.

 

Molly

Tamlen's picture
Tamlen
Posts: 281
Joined: Jan 2018

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

Forherself's picture
Forherself
Posts: 464
Joined: Jan 2019

I wonder if those pains are just part of getting older.  I am so glad to hear those letters NED.   Happy for you. Smile

 

jan9wils's picture
jan9wils
Posts: 146
Joined: Mar 2017

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!

MoeKay
Posts: 301
Joined: Feb 2004

Hopefully the increase in gabapentin, decrease in B6, and the supplements recommended by your neurologist will give you some relief from the neuropathy. 

Sorry to hear about your exposure to COVID.  My nephew, who works in a medical setting, came into contact with a COVID positive patient and was required to self-quarantine for 14 days.  He did not develop symptoms until day 14, after which he tested positive.  Fortunately, he's young and his symptoms were minimal.  (My nurse sister was another story, however, although thankfully she managed to just barely avoid hospitalization and has fully recovered). 

Be well and stay safe!

Molly110
Posts: 182
Joined: Oct 2019

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.

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