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Advice on Dealing With Neuropathy

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Published on January 28, 2015

A frequent side effect of cancer treatment is neuropathy, but many patients are reluctant to speak up for fear of interrupting their treatment. At a recent patient forum, experts discussed the topic of neuropathy, explained why itâ??s important to talk with your doctor about what you're experiencing, and offered tips on how to relieve the pain of neuropathy.

Sponsored by Patient Empowerment Network through educational grants from Onyx Pharmaceuticals, Novartis, and Millennium: The Takeda Oncology Company.

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Transcript | Advice on Dealing with Neuropathy

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That's how you’ll get care that's most appropriate for you.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you. 

Jack Aiello:

Dr. Morgan, sometimes, supplements are advised if you have neuropathy, the alpha lipoic acid and such. Can you talk about dealing with neuropathy?

Dr. Morgan:

The absolute important thing about neuropathy is try not to get it in the first place. So…

Jack Aiello:

…and so on we go.

Dr. Morgan:

No, it’s really important. So as we’ve learned more about using bortezomib (Velcade) and thalidomide (Thalomid), it’s become really obvious that stopping it happening is important. So I always tell people, you know, if you’re at home, you’ve got some symptom that’s worrying you, you don’t necessarily need to stay on the thalidomide or continue having the Velcade. Stop it. Seek advice but don’t go on blindly.

Because I’ve been in some, kind of, relationships with patients where, like we hear, they don’t want to tell you that they’ve got neuropathy. They’re scared that the treatment will, you know, they don’t have any alternative ,and then they get really severe neuropathy. And that’s a really bad, bad mistake.

So people need to be honest about their symptoms, and doctors need to cut the doses before people are really damaged. And that’s the lesson. It’s not about alpha lipoic acid and this other kind of nonsense. It’s about good medical practice and prevention rather than cure

 

Jack Aiello:

Are there any trials out there to address anything that might really work for chemo-induced neuropathy? And, by the way, if so, I will be the first one to sign up.

Dr. Davies:

So I’m now thinking I’m not aware of any, and I’m going to look at my colleagues, okay. However, I am aware of a company that [is] trying to develop some drugs for chemo-induced neuropathy. And so, I would imagine in the next year or two, there will be some studies that are going to be initiated. But, as you mentioned, most of the studies, I think, that have been done to date have either been around reducing the dose of the drug.

And just coming back to that, I think one of the important things is that as we’re moving forward now, we’re learning that actually sometimes it’s not the actual dose of the drug that the patient’s on; it’s actually the length of time the patient can be on the drug for. And so, therefore, sometimes being on the smaller drug for a long period of time is actually good. And Dr. Orlowski, is going to know about a trial that I ought to know about now.

Dr. Orlowski:

No, no, not at all.

Dr. Davies:

No, no?

Dr. Orlowski:

But I did want to mention we did a study a couple of years ago, which has been published now. This was a small pilot trial, but it looked at acupuncture for people with neuropathy. And we had quite good results with acupuncture. The problem with it is that many people don’t have insurance that will pay for acupuncture. But if you’re lucky enough to have that and you have an acupuncturist nearby, I know it sounds kind of weird; you’ve got stinging pain and you’ve got to go get needles put in there, so why should I feel better.

But on our trial virtually every patient that we treated with acupuncture had a benefit, which was both while they were on the acupuncture treatments and often for a long time afterwards. So, keep that in mind, if you have it available.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.