NeuroTalk Support Groups - Regeneration

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Peripheral Neuropathy (https://www.neurotalk.org/peripheral-neuropathy/)

- - Regeneration - when is it too late (https://www.neurotalk.org/peripheral-neuropathy/224804-regeneration-late.html)

Quote:

Originally Posted by glenntaj (Post 1164911)

--which is admittedly anecdotal--but I am involved on this board and others and with several neuropathy support groups--there is a lot of variation in the amount of recovery that people who have chemo-induced neuropathy get.

Many do get some recovery, but a lot depends on the chemotherapeutic agent and the duration and number of course of chemotherpay needed. The heavy metal agents, for example--platinum based drugs and the like--are notoriously neurotoxic (though don't count on an oncologist to tell you this going in). They are very powerful agents designed to disrupt the DNA of cancer cells and they do a good job of doing that to nerve and other cells as well.

The immunomodulating and monoclonal antibodies used for many blood cancers can also be neurotoxic but seem to be not quite as bad as the metal based drugs; the mechanisms by which they act are somewhat different, and, at least from speaking to people who've had them, their neuropathies on average tend to be less severe and they seem to recover more fully.

Of course, while chemotherapy is going on one should be doing everything possible to promote nerve maintenance and repair, from exercise to judiciously chosen supplements (likely essential fatty acids, methylcobalamin B12, probably some co-enzyme Q10, maybe others) to good diet.

So when do we decide that the cure is worse than the illness? My brother in law and his sister both developed the same type of cancer, I forget what it was exactly but he went for the full medical fix and she refused and just accepted palliative care. He had a hellish time of it with amazing back pain and neuropathy among other nightmare symptoms of pain. She on the other hand had very little pain as the cancer progressed towards killing her. Basically she just wasted away and got progressively weaker. The major pain came from the cure and not the cancer it would seem. And he died all the same but knocked out with the heaviest pain meds.

Not all cancers may be like that but many doctors say they would never undergo many of the treatments they prescribe. IMO that's criminal behavior. There used to be a thing called the hippocratic oath but that has turned into the hypocrisy oath.

Quote:

Originally Posted by icelander (Post 1164916)

So when do we decide that the cure is worse than the illness? ... Not all cancers may be like that but many doctors say they would never undergo many of the treatments they prescribe. IMO that's criminal behavior. There used to be a thing called the hippocratic oath but that has turned into the hypocrisy oath.

My cancer was very borderline whether I needed chemo at all.

If I had it all to do over again, I probably wouldn't do the chemo.

Here's an interesting story of people who opted out of medicine and subsequently lived until their 90's.

http://www.nytimes.com/2012/10/28/ma...nted=all&_r=2&

Quote:

Originally Posted by v5118lKftfk (Post 1164924)

That's quite interesting. I've become convinced through experience that lifestyle and emotions are BIG players in health. Living a simple and stress free life promotes joy and healing IMO. We have lost that skill in this country of fast cars, watches, bills and mortgages, computers and TV etc. Look at the faces on the street. STRESS is screaming out from their faces. And look at us here, stressed and feeling like we are in a maze to find some help. Doctors are suspect and the big Pharma that owns them and tells them what to think and do by basically bribing them. I guess I'm on a rant. :winky:

However I didn't just figure this out yesterday. Now I'm in the system and they want to throw everything at me. I do my own research and I've refused 80% of their suggestions. Besides neuropathy I have something that is causing severe and somewhat rapid weight loss. I have refused all invasive investigation into the cause. I read the possible side effects and I couldn't live with them. I see the phrase "small but significant" when it comes to possible hellish side effects or errors. I'm not risking that as it doesn't hurt to this point in time. Neuropathy hurts! I'm fine dying without much pain as opposed to living with lots of pain for the rest of my limited existence. And self delivery is never out of the question but that is another road filled with misinformation and something one must judiciously study to be successful at. Life is always challenging at least in a culture such as this.

Quote:

Originally Posted by icelander (Post 1164934)

Now I'm in the system and they want to throw everything at me. I do my own research and I've refused 80% of their suggestions. Besides neuropathy I have something that is causing severe and somewhat rapid weight loss. I have refused all invasive investigation into the cause. I read the possible side effects and I couldn't live with them.

Despite all that is happening to you, you sound quite astute and strong. Sounds like you are really taking charge of your healing.

Best wishes. :)

Quote:

Originally Posted by v5118lKftfk (Post 1164970)

Despite all that is happening to you, you sound quite astute and strong. Sounds like you are really taking charge of your healing.

Best wishes. :)

Thank you.:hug: I have. I'm taking charge of every aspect of my life now. Even possibly when and how I leave it. I want this to be my life not someone else's drama in which I'm not playing the leading role.

Quote:

Originally Posted by icelander (Post 1165033)

I think you have already won the real battle. :)

Quote:

Originally Posted by v5118lKftfk (Post 1165044)

I think you have already won the real battle. :)

Maybe, my life is scary stuff now. I'm just an animal and animals have a fear of death. But I'm working on it to the best of my skills and courage. In the courage area I'm no expert.:confused:

Patrick, your supportive and positive answer is so needed. I have sudden onset wrist and foot drop over the last 2months which has been devastating. It is nice to hear someone say "anything is possible" and I am so glad I found this group in my darkest hour. Thanks.

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Quote:

Originally Posted by Rebeccaannlambert (Post 1165153)

Thanks, and I am usually a pretty negative person. :D I know people don't always trust doctors but one thing both of my neurologists told me is stay positive. If you're someone who prays, pray hard, if you meditate, do that longer, whatever. Much like recovering from cancer positive outlook does help the body. There is actually scientific proof of that. We're here a short time in the grand scheme and as bad as the pain from this is there are always those worse than us.

Stay strong!!!! ;)

Thanks.

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