Need hope: Neuropathy from chemo

Posted by needshope78 @needshope78, Apr 24, 2020

Is there anyone going through neuropathy from chemo. If so how long until my mother will be able to walk again afterwards. It’s been 8 weeks every week gets worse

Interested in more discussions like this? Go to the Cancer: Managing Symptoms Support Group.

@d13

I had two chemotherapy treatments, with the last one being in early June. I ended up with neuropathy in my feet and some in my hands. No pain, just alot of numbness in my feet. I've also had three tests done; first one with gastroenterologist. Results found that I had achalasia. Two more tests with a thoracic surgeon; no achalasia and nothing showing that I might have anything to do with acid reflux. My symptoms have been warming sensations in my abdomen area and my head. Also some tightness around my rib cage, some nausea and sudden weight loss. Can't seem to take deep breaths easily. Several trips to the ER because of dizziness and breathing issues. They couldn't figure out. My oncologist said that the neuropathy in my feet would go away. From what I know now, that could take up to a year. I'm asking if anyone else has been going through these symptoms after having chemotherapy treatments. I have an appointment with my oncologist in January. I'm going to try to get an earlier one. The thoracic surgeon told me to have a discussion with my oncologist because he thinks my symptoms may be a result from the chemotherapy treatments. Can anyone out there relate?

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Hi @d13, I am sorry you are going through this. You will see that I moved your post to a discussion from April about getting neuropathy after chemo. I did this so you can connect with other members.
You may also want to check out this discussion: Chemo-related Neuropathy: https://connect.mayoclinic.org/discussion/1st-time-at-mayo-for-neuropathy/

What are you doing to counteract the pain?

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@amandaa

Hi @d13, I am sorry you are going through this. You will see that I moved your post to a discussion from April about getting neuropathy after chemo. I did this so you can connect with other members.
You may also want to check out this discussion: Chemo-related Neuropathy: https://connect.mayoclinic.org/discussion/1st-time-at-mayo-for-neuropathy/

What are you doing to counteract the pain?

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I was given, by a relative, a roll on deep tissue salve with camphor oil and menthol containing; 300mg THC + 300mg CBD + 20mg CBN I don't have the pain, just numbness.

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Has anyone found a way to reduce numbness and tingling?

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@gardiner

Has anyone found a way to reduce numbness and tingling?

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Welcome @gardiner. We have many people talking about managing peripheral neuropathy here. To help me connect you with similar people, can you tell me - are you experience neuropathy as a result of cancer treatment such as chemotherapy?

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@gardiner

Has anyone found a way to reduce numbness and tingling?

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Thank you for responding! I appreciate your concern.
The tingling (neuropathy) in my left am's ulnar nerve distribution is probably due to Velcade® (bortezomib) treatment for my multiple myeloma.

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@gardiner

Has anyone found a way to reduce numbness and tingling?

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Hello @gardiner, I would like to add my welcome along with @colleenyoung and others. I also have neuropathy but mine is idiopathic small fiber neuropathy. I do sometimes get tingling in my left or right arm that I'm sure is ulnar nerve related but it normally only occurs when I'm sleeping on my side and it wakes my up so I have to roll over to the other side or on my back for relief. I'm wondering if you might find the following information from the Foundation for Peripheral Neuropathy helpful.

Managing & Coping with Neuropathy: https://www.foundationforpn.org/living-well/lifestyle/managing-peripheral-neuropathy/

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@gardiner

Thank you for responding! I appreciate your concern.
The tingling (neuropathy) in my left am's ulnar nerve distribution is probably due to Velcade® (bortezomib) treatment for my multiple myeloma.

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@gardiner Please let me add my welcome to Mayo Clinic connect!

Like you, I am going through chemo for multiple myeloma, and take Revlimid [linolidamide] on a 21 day on, 7 day off cycle. Dealing with neuropathy in my left calf and foot is a challenge, although my oncologist feels it is a result of the myeloma deposits on the nerves near my hip, rather than the chemo. It has been almost a year since I have had sensation in that area. There is a bit of feeling on the very outside of my left foot.

Sometimes rubbing CBD cream on the affected part helps as a topical solution. Also using compression socks seem to make things a bit better. And often at night, I do a self-massage of the area, to calm the nerves down, with a lavender scented lotion. Speaking to your oncologist or patient advocate may give you some insight, too, for remedies. Will you let me know what you find out? We're in this together!
Ginger

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@johnbishop

Hello @gardiner, I would like to add my welcome along with @colleenyoung and others. I also have neuropathy but mine is idiopathic small fiber neuropathy. I do sometimes get tingling in my left or right arm that I'm sure is ulnar nerve related but it normally only occurs when I'm sleeping on my side and it wakes my up so I have to roll over to the other side or on my back for relief. I'm wondering if you might find the following information from the Foundation for Peripheral Neuropathy helpful.

Managing & Coping with Neuropathy: https://www.foundationforpn.org/living-well/lifestyle/managing-peripheral-neuropathy/

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That link was very helpful. Thanks for your care.

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@gingerw

@gardiner Please let me add my welcome to Mayo Clinic connect!

Like you, I am going through chemo for multiple myeloma, and take Revlimid [linolidamide] on a 21 day on, 7 day off cycle. Dealing with neuropathy in my left calf and foot is a challenge, although my oncologist feels it is a result of the myeloma deposits on the nerves near my hip, rather than the chemo. It has been almost a year since I have had sensation in that area. There is a bit of feeling on the very outside of my left foot.

Sometimes rubbing CBD cream on the affected part helps as a topical solution. Also using compression socks seem to make things a bit better. And often at night, I do a self-massage of the area, to calm the nerves down, with a lavender scented lotion. Speaking to your oncologist or patient advocate may give you some insight, too, for remedies. Will you let me know what you find out? We're in this together!
Ginger

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Thanks.

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@gardiner

Thank you for responding! I appreciate your concern.
The tingling (neuropathy) in my left am's ulnar nerve distribution is probably due to Velcade® (bortezomib) treatment for my multiple myeloma.

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Gardiner,
Thanks for the further clarification. There are quite a few discussions about managing the side effect of peripheral neuropathy related to cancer treatments in the Cancer: Managing Symptoms support group here: https://connect.mayoclinic.org/group/cancer-managing-symptoms/

I'm moved your discussion to this existing discussion to connect you with additional members dealing with the same thing.

@gingerw and @gardiner, I found this interesting study about Bortezomib-induced painful neuropathy in patients with multiple myeloma (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3934028/).

"Painful neuropathy usually occurs within the first 5 cycles of treatment. When subsequent (more than 5) cycles are applied on a patient, there is only a slight tendency for enhancement in the incidence of neuropathy. This supports the opinion that the dose effect of bortezomib is much more associated with the dose-threshold effect (A threshold dose is a dose level below which there is no effect on the biological response.) than with the cumulative-dose effect (the total amount of a drug). The clinical and electrophysiological study performed by Stubblefied et al. pointed out that pre-existing damage involving the peripheral nervous system should also be considered as a risk factor in the susceptibility to bortezomib-induced neuropathy (BIN) in MM patients

In summary the authors emphasize that despite the high risk of BIN currently introduced algorithms of dose-limiting schedules have been successful in pain relief. This allows therapy to be continued, which results in a longer life span without deterioration of daily living for MM patients."

Gardiner, how many cycles of treatment have you had? Has your team talked about ways to reduce the effect of neuropathy?

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