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Living with Neuropathy - Welcome to the group

Neuropathy | Last Active: Apr 25 10:43pm | Replies (5972)

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@cwm1

I have a question for all of you. My neuropathy was chemo induced. It isn’t as bad as some of you have it by any means. Mine is more numbness and my feet feeling like they are swollen and tight. It seems to get progressively slightly worse with occasional burning in a few toes.
My dilemma is that my cancer has progressed and I now have stage 4 triple negative breast cancer. There are some tests being done now and the results will determine treatment. One of the two treatments (depending on test results) is known to cause neuropathy. I really am having a problem with the thought of knowingly walking into the pain that I know some of you are having. Of course, the alternative is not desirable either. I very easily may have to make this decision on the 16th. I am almost 70. My husband and family don’t see any choice; you do what is necessary to stay alive. But they have no conception of what is now only constant discomfort but could be so much worse. So for those of you who have the constant pain, which would you value more....quality versus quantity?

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Replies to "I have a question for all of you. My neuropathy was chemo induced. It isn’t as..."

@cwm1 Quantity vs. quality. That's a tough one. If it were my decision, I think I'd go for the most quality that would give me the most time. Here in Oregon, where assisted suicide is legal, many people choose to decide at which point their quality of life is in the toilet, and make arrangements with an organization that facilitates assisted suicide. I'm not recommending that course of action, but there are some things we can do that give instructions as to what we want our end of life to lookook like. I have an advance directive on file at the hospital that outlines what I want and what I don't want at the end of my life.

Death is a subject that too many people are uncomfortable with, but it's a reality of life. Many people expect heroic measures in order to live a few days or weeks more. Often it's the family members who want the heroism. You sound like a woman who can make smart choices and this is a good time for making choices that YOU are comfortable with. Will a conversation with one of your doctors be a help? Or you might want to discuss it with a counselor. Many hospitals have staff members who are great resources for the kind of decisions you're facing. God bless you and give you peace.

Jim

@cwm1, I agree with @jimhd and I'm sure a lot of others here. That is really a tough question. Most of us learn to live one day at a time and try to stay focused on finding something that helps us and getting a little joy whenever and whereever we can. I found an article that may provide some help for you.

What are the best remedies for neuropathy from chemo?
-- https://www.medicalnewstoday.com/articles/323481.php

Hope you have a pain free day.

John

Since you wrote I have been hoping for some wisdom but it seems to be alluding me. My Mom already had this discussion with her doctor about Cancer or any other disease that comes up. She is 89 and she doesn’t want any type of surgery or any heroic type treatments or measures. I argued and argued. I finally realized I was being selfish and I took her to the attorney to make the changes in her Health Care Directive she desired. I’m not sure I’m that strong. I have had very severe Epilepsy since I was 15 and medication induced Neuropathy since I was 35. Bad as the Seizures and Neuropathy have been I have enjoyed life and found happiness with the help of strong narcotics. However I never had anything as Devastating as Cancer. My neighbor, 55, recently was diagnosed with stage 4 Breast Cancer. She beat it once but decided not to go through it again. I believe it takes a very courageous person to make such a decision. If you decide against treatment it will be hard on your family. The most important consideration however is you. It’s obviously your decision and I imagine your family will understand, maybe not right away and they may be angry with you. Have your doctors mentioned any Neuropathy treatments? My Neuropathy got better but it took probably 25 years. Only you can answer the difficult question your asking. If it were me, I can’t possibly know what I’d do until I was faced with the problem but I might choose a treatment, if available, that may give me a little more time without causing significant long term problems. I’d go to a University Medical Library and run a computer search on the probability of Chemo drugs causing Neuropathy. I’ve done this several times and always found studies that won court cases for my Dad. Maybe find out what medication they are planning to use and talk to some Pharmacists.
May God be with you. You’ll be in my thoughts and prayers.
Blessings,
Jake