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Mayo seeking volunteers: Chemo-Induced Peripheral Neuropathy study

Posted by Colleen Young, Connect Director @colleenyoung, Aug 11 12:14pm

Mayo Clinic is seeking volunteers (patient + family caregiver) for a research study on Chemo-Induced Peripheral Neuropathy (CIPN).

The purpose of this study is to assess the impact of a family caregiver massage technique that can help cancer survivors with CIPN. Symptoms of CIPN include: Numbness/pain/tingling in the fingers, toes, hands, or feet.

You may be eligible to participate if you:

  • Are 18+ years of age
  • Have been treated with certain kinds of chemotherapy for any type of cancer at least 6 months ago
  • Have moderate to severe symptoms of CIPN

Participation involves you and a family member (spouse, intimate partner, friend, or other family member) being randomly assigned to one of three groups. Two groups will be assigned to use one of two different massage techniques via an online platform. The third group will receive standard care and is able to participate in the massage program after completing the study. All three groups will provide us with weekly reports and self-reporting of CIPN symptoms.

The functions will be assessed using surveys at enrollment, six weeks, and twelve weeks. Study participation is a total of 12 weeks. You will be compensated for your time spent in this study (up to $240).

No in-person visits are required. Massage techniques are provided online.
You do not need to be an existing Mayo patient to participate.

For more information, contact a member of the study team at (904) 953-5102 or (904) 953-8855.

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

Profile picture for cookercooker
cookercooker | @cookercooker | 11 hours ago
In reply to @murray3 "This appears to be a very worthwhile study sponsored by the Mayo Clinic. I had chemo-induced..." + (show)
Profile picture for murray3 @murray3

This appears to be a very worthwhile study sponsored by the Mayo Clinic. I had chemo-induced peripheral neuropathy brought on 5 Bendamustine & Rituximab chemotherapy cycles that commnced May of 2023. Unfortunately, chemotherapy proved ineffective on me and, as a result, my 6th cycle was cancelled. Since November 2023, I have been on the BTK Inhibitor Zanubrutinb.

I underwent a 2 hour EMG in June-July 2024 which confirmed my diagnosis as severe Axonial Polyneuropathy. My peripheral neuropathy is well under control now since I started regular weekly manual and electro-acupuncture treatments July 2024 from a Doctor of Acupuncture 3 hours away from me. She is currently 1 of only 5 such trained and certified Doctors of Acupuncture, Ac in all of Canada. Once my peripheral neuropathy was resolved, I then began similat acupuncture treatments for both serious lumbar spine issues as well as for both of my severely osteoarthritic knees. As well as doing these treatments, I also have maintenance treatments for my original concerns (although these treatments are at a much lesser frequency now).

I would think that based upon the information I have just shared that I wouldn't qualify for the Mayo Clinic study.

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@murray3 Hi Murray,
Where are you in Canada that you received this peripheral neuropathy treatment? I'm in BC.

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wileywright | @wileywright | 1 day ago

I have chemo caused peripheral neuropathy in my right leg. But it was 20 years ago and presumably caused by vincristine.

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stangreen | @stangreen | Sep 6 2:50pm
In reply to @martiniusfox "Thank you very much for your response, I was sure I was not the right volunteer..." + (show)
Profile picture for martiniusfox @martiniusfox

Thank you very much for your response, I was sure I was not the right volunteer for you, just for your information, my neuropathy is definitely a side effect of chemotherapy for cancer treatment...

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Neuropathy is sheer hell and much much worse after completing the course of Folfirinox.

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martiniusfox | @martiniusfox | Sep 5 11:01am

Thank you very much for your response, I was sure I was not the right volunteer for you, just for your information, my neuropathy is definitely a side effect of chemotherapy for cancer treatment...

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1 reply
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Ann Dunshee | @anndunshee | Sep 4 12:57pm
In reply to @martiniusfox "I have had a complicated colostomy for over 10 years and I can say that living..." + (show)
Profile picture for martiniusfox @martiniusfox

I have had a complicated colostomy for over 10 years and I can say that living with a stoma is not the worst thing that can happen to you.
Shortly after the operation, I returned to work, went in for sports and traveled a lot until pheripherical motor neuropathy of the legs appeared, which gradually confined me to the house - and this is much worse than the stoma itself. If in-person visits are not necessary because the massage techniques are provided online and I am not an existing Mayo patient, can I please attend from Slovakia and for free? I would like to know if my leg pain is at least somewhat treatable...

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Thank you for your question. At this time, we cannot enroll people residing anywhere outside of the US per NIH regulations. Also, the study is for chemo-induced neuropathy and it sounds as your neuropathy may be unrelated.

Thank you reaching out.

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Ann Dunshee | @anndunshee | Sep 4 12:53pm
In reply to @cvestor "I sygned up for the program but YOU have not sent my family member the relewase..." + (show)
Profile picture for cvestor @cvestor

I sygned up for the program but YOU have not sent my family member the relewase forms yet I signed then & returned but she is still waiting.

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I just left you a message that I did send the consent form in August and again did so again today. I left my number and the email address I have on file to send the consent to. If that is not correct, then please call me. Thank you. (904) 953-5102.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 4 12:04pm
In reply to @cvestor "I sygned up for the program but YOU have not sent my family member the relewase..." + (show)
Profile picture for cvestor @cvestor

I sygned up for the program but YOU have not sent my family member the relewase forms yet I signed then & returned but she is still waiting.

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@cvestor, please contact @anndunshee of the study team by email dunshee.ann@mayo.edu or phone (904) 953-5102. She will follow-up.

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cvestor | @cvestor | Sep 4 10:09am

I sygned up for the program but YOU have not sent my family member the relewase forms yet I signed then & returned but she is still waiting.

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2 replies
Profile picture for martiniusfox
martiniusfox | @martiniusfox | Sep 3 12:34pm

I have had a complicated colostomy for over 10 years and I can say that living with a stoma is not the worst thing that can happen to you.
Shortly after the operation, I returned to work, went in for sports and traveled a lot until pheripherical motor neuropathy of the legs appeared, which gradually confined me to the house - and this is much worse than the stoma itself. If in-person visits are not necessary because the massage techniques are provided online and I am not an existing Mayo patient, can I please attend from Slovakia and for free? I would like to know if my leg pain is at least somewhat treatable...

REPLY
1 reply
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kathy_sheffield | @kathy_sheffield | Aug 21 11:17am
In reply to @kathan55 "I got a call from the Mayo Clinic regarding the massage therapy!! I told the lady..." + (show)
Profile picture for kathan55 @kathan55

I got a call from the Mayo Clinic regarding the massage therapy!! I told the lady I’m in the middle of moving, but I’m very interested. Hopefully I’ll be settled soon and she said to call her back.
They teach you and a caregiver how to do the massage therapy. I’m not sure if my daughter’s hands are strong enough to do it, but eventually, I’ll talk to her about it. I was really pleased to hear back from them.

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We look forward to hearing back from you, and good luck with your move!

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