Stem cell transplants and some of the things they don't warn you about

  • umack
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1 week 12 hours ago #29460 by umack
Hi,
I was diagnosed with pelvic lymphoma 18 months ago, and CNS lymphoma 8 months ago.
I have medical training but nothing really prepared me for the consequences of the chemotherapy treatments which have so far been reasonably successful.
Since this is a pain forum, I'll try and keep to the point and only talk about two consequences of the chemotherapy that are both quite common and certainly distressing.
The first is peripheral neuropathy, which can vary from annoying to a lifestyle demising condition with chronic pain. The damage to peripheral nerves from chemotherapy can be significant, leading to numbness, pins and needles and in some cases severe chronic pain. There is now a wealth of clinical evidence including multi-centre double blind clinical trials which indicate that Acetyl Carnitine will greatly reduce peripheral neuropathy. in some cases severe pain (see EXPERIMENTAL AND THERAPEUTIC MEDICINE 12: 4017-4024, 2016). I my case it has most certainly not only partly reversed, but also halted the progression of peripheral neuropathy. Acetyl carnitine is relatively inexpensive, and it works, but I had to find out about it myself, not through doctor advice.
The second area of discussion is shingles. For older people who have had chicken pox, shingles is an extremely frequent (50-60%) consequence of chemotherapy and depressed immune function. It can be incredibly painful and debilitating, especially when you have hit on your face and head, as in my case. What astounded me was finding the high frequency of shingles in clinical studies following stem cell transplant. Why wasn't I warned that this could happen? A small study (230 patients) in the US which studied the effect and value of early post-transplant shingles vaccination, found that 68% of unvaccinated patients got shingles within 6-9 months of the transplant, but only 8% of patients got shingles if they were vaccinated at 2 and 3 months after the transplant.
I quoted this more to indicate that shingles is a very common outcome, but I wasn't warned, nor was a the easy shingles vaccination considered. The post-herpetic neuralgia (PHN) has been one of the most painful experiences I've even had and I now know what it feels like to have a red hot poker stuck into my eye. If only it could have been avoided...
There ate many treatments for PHN including local anaesthetic patches, and different drug regimes. However facial PHN has it's challenges.
By sheer luck I applied an ice pack to my eye during one of the PHN episodes and the pain disappeared almost immediately. I now have an esky and ice pack nearby and when I feel the first burning sensation, the ice pack stops the PHN in its tracks. It's such an easy, albeit slightly inconvenient (carrying a small esky everywhere isn't fun) way to avoid excruciating pain.
I hope these observations help other people to cope with peripheral neuropathy and shingles pain.
regards,
Rick

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1 week 12 hours ago #29461 by Peter
Hi Rick,

Welcome to the CPA Forum!

And thank you for posting this information, because it is very helpful information, especially the ice pack tip when dealing with your shingles pain. That is something we can remember and if we end up with it, we can try it out.

You might notice that I moved your post out of the Helpful Links category into this one.

Please keep us informed on your progress. It's people like you who wade through these conditions and who are able to put it into words informing the rest of us of the pitfalls and also the benefits of trying out some helpful home tips that may ease our suffering.

I use an ice pack for my migraines when they come. Mine are created from a trapped nerve root at C4 on the left side of my neck. I live with constant high levels of pain, but sometimes it flares up and goes all over my neck and skull, then into my eyes and ears and my brain just screams at me. My neck becomes so stiff and sore and my skull feels like it's in a bone crusher. I go to bed with an ice pack under my neck and leave it there till it feels like it has frozen my neck and the base of my skull, then I move it around to the left side of my neck while I lie on my right side, put a pillow on top to keep it there and go to sleep. I often have a pretty good sleep that night and come morning all has been reset back to the normal high level of pain, but no thermonuclear explosive headache.

Anyway, please keep reading our site and let us know how you get on.


Peter

I wish the ring (this Chronic Pain) had never come to me. I wish none of this had happened. (Frodo Baggins)

So do all who live to see such times. But that is not for them to decide. All we have to decide, is what to do with the time that is given to us. (Gandalf the Grey)

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