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I have late stage CIPN & RILP
I had Anal Cancer in 2000 & around 2017 I started getting symptoms & almost a year later they diagnosed me with RILP
It has progressed from drop foot in both feet to nerve damage & I am now using a walker with braces. I was over-treated with chemo & radiation and became neutropenic and spent 10 days in ICU.
These side affects are so devastating and there must be ways or studies to help
counteract the outcome of Chemotherapy & Radiation.
These were never discussed with me & I had no idea I would be plagued by side effects so late in life. I am now 71 & my quality of life is terrifying.
Hi Sandra-
I am sorry to learn of your nerve damage. I have learned that oncology rarely if ever warns patients about long-term and late stage side effects of conventional therapies. Possible therapies for nerve damage are not well researched but I will list those that I know of- and do myself.
I too wear ankle foot orthotics and use a walker. I am hoping to stay out of a wheelchair.
I take ALA alpha lipoic acid daily. I went through a period of about 3 months of weekly (2010 ish) hyperbaric oxygen therapy. I believe that HBOT can heal radiation fibrosis but must be done before the nerve damage sets in. I felt great for a day or two post HBOT but never experienced any long-term benefit.
Lastly, I exercise as much as I can daily. I have learned specific exercises from my physical therapist that I think help…a little.
I believe there are conventional meds for nerve damage but they come with serious side effects.
I’m sorry that I can’t offer more therapies. Hang in there,
David Emerson
ReplyMy wife received radiation for thyroid issues. It has Carson’s long lasting side affects. One being losing feeling in parts of the body. Is there a way to heal the nerves connected to those areas?
ReplyHi James-
I am sorry to read of your wife’s radiation side effects. Two therapies that I have done myself and have read studies about. HBOT has been shown to heal radiation damage though the sooner the patient undergoes HBOT the better the results. And two, acupuncture. Keep in mind that this therapy is slow aka takes many sessions to make a difference.
For example, approx. 3 months of weekly appts. helped my xerostomia but I’ve been undergoing weekly acupuncture for joint necrosis for over a year now. Shoulder pain has improved but I’m having to work at it.
I would also encourage PT though I don’t know what nerves/muscles are a problem.
Let me know if you have any questions.
David Emerson
ReplyDavid,
My name is Jim Neilly and I was diagnosed with a soft tissue sarcoma in my left arm five years ago. My cancer recovery is going well, sounds like yours is too. My treatment included tumor resection, chemotherapy, and radiation. About a year after radiation ended I experienced drop wrist syndrome, which was treated with hand therapy and eventually scar tissue surgery. Over the next year I regained about 75% usage in my left arm and hand, and I would describe my current state as dealing with daily stiffness rather than pain. My major concern is that my neuropathy does not worsen and what steps I can take to possibly improve my situation (I have plateaued with hand therapy/exercises).
Thank you for your very informative video!
Jim
Hi Jim-
Thanks for your question. I did some research and wrote a blog post to answer your question- hope it helps. I anonymize all patients…
https://peoplebeatingcancer.org/soft-tissue-sarcoma-wrist-drop-syndrome/
David Emerson
ReplyHi Adrienne-
I will reply to your question directly via email. Thanks.
David Emerson
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