Regeneration - when is it too late

v5118lKftfk · 08-21-2015, 04:03 PM

Quote:

Originally Posted by mrsD

Regarding chemo damage:

..... if enough cells die, then you are out of luck. If they are only damaged, they may repair themselves, and that takes time (and patience).

Sorry to ask a newbie question .... are there tests to show whether too many cells have died or are only damaged?

Are there any ways to tell or rules of thumb to suggest what camp you are in?

If you had to guess, what usually is the general time range one would normally see improvement. Would you stab a guess that after X number of years, one should cut their losses, accept where they are and switch their mindset?

v5118lKftfk · 08-21-2015, 04:07 PM

Quote:

Originally Posted by mrsD

Regarding chemo damage:

The chemo patients don't seem to stay on the forums for long, so I don't see often much progress with them. The statin damage posters don't seem to improve much either.

Just to clarify ... are you saying you don't believe chemo patients improve much? .... or just you don't see them improve (have information on their improvement) because they don't stick around much on the forum?

Ragtop262 · 08-21-2015, 04:32 PM

Quote:

Originally Posted by v5118lKftfk

At some point, it will be "healthier" for me to switch mentality from spending lots of time in researching / implementing therapeutic doses of things I wouldn't normally take long term to support regeneration, to instead accepting I am most likely near the best I will ever be, learning how to live with this level, and trying to refocus my energies to living fully with where I am.

I think the trick to to find a reasonable balance between the two. It definitely takes a lot of time to get a handle on what's going on with your body, and what you can possibly do about it. But once you decide what supplement, diet, and general health program is best for you - just go with it and live your life.

Spend some time to check in on the forums once in a while to see if there are any updates, new research, etc.

But always reserve some time each day to just "live your life" to the best of your ability.

Regardless of the underlying cause, I think most of us will have to face the reality that we will never be the same as we once were. That doesn't mean that we won't see some improvement or that some new treatment won't come along that will help. Be realistic - but always keep the faith

mrsD · 08-21-2015, 05:34 PM

What I said is that I don't see chemo patients here staying on and providing information on their status.

They post a short time and leave.

Kitt · 08-21-2015, 06:04 PM

v5118lKftfk I have sent you a PM.

northerngal · 08-21-2015, 08:35 PM

Quote:

Originally Posted by v5118lKftfk

Big Thanks Mrs. D. Your post is very helpful. (as always)

Since you are so involved with Neurotalk, have you seen any patterns?

Of course, selfishly, I am curious about what patterns you see with chemo neuropathy regeneration.

.... but for other readers / types have you seen patterns as well ?

Perhaps others are also caught in my dilemma ....

At some point, it will be "healthier" for me to switch mentality from spending lots of time in researching / implementing therapeutic doses of things I wouldn't normally take long term to support regeneration, to instead accepting I am most likely near the best I will ever be, learning how to live with this level, and trying to refocus my energies to living fully with where I am.

(Right now researching, trying, testing, visiting doctors is lots of time, work, resources).

Of course, I will always be hopeful and open to regeneration, but I want to be honest with myself as well.

With Chemo neuropathy, I have often heard one only have a limited amount of time (but haven't heard any guidelines to how long this is).

I find this very stressful. I feel like I am in a game show, racing a time clock and have to figure out things before the buzzer goes off with little information. If I don't get the answers right in a limited time, then my penalty is that I am stuck with lifelong debilitation.

.... hope this isn't hijacking this thread .... I suspect this line of thinking is probably typical, very relevant to the thread topic and may help others as well.

Any thoughts ??

I'm not at the point where I am able to accept that the neuropathy wont get better and to just accept it either.
I live life to the fullest I can, but still wish for my "old legs" back.
I don't think we need to give up hope, researching,trying new things or our time on here to enjoy life with the nerve damage--we just need to find a balance that works for us. For me reading and communicating here keeps me from discussing it with my friends and family.
The hope of new treatments is what keeps me going. I like to think there is going to be a method to regenerate nerves one day soon that focuses on regeneration no matter caused the nerve damage.

As for the chemo PN, I have seen two people I know recover from it, maybe not 100% but enough so it is not affecting them very much.

v5118lKftfk · 08-22-2015, 02:54 AM

Quote:

Originally Posted by mrsD

Regarding chemo damage:
The chemo patients don't seem to stay on the forums for long....

It's an interesting questions what type of pners gravitate towards this forum, what people are likely and less like to chat about.

Just guessing .... Probably newbies with pn that comes on very strong, types of pn where the health care professionals know the least, types of pn that are statistically greater, and then, sad to say, people who really suffer.

Perhaps the types that recover moderately don't stick around to write lots of posts about it.

I wonder how this skews our perception? Perhaps we also don't hear much from the people who had regeneration.

Natalie

Neuroproblem · 08-22-2015, 03:18 AM

Quote:

Originally Posted by v5118lKftfk

It's an interesting questions what type of pners gravitate towards this forum, what people are likely and less like to chat about.

Just guessing .... Probably newbies with pn that comes on very strong, types of pn where the health care professionals know the least, types of pn that are statistically greater, and then, sad to say, people who really suffer.

Perhaps the types that recover moderately don't stick around to write lots of posts about it.

I wonder how this skews our perception? Perhaps we also don't hear much from the people who had regeneration.

Natalie

I think some peoples pn do eventually recover, if its not diabetic or autoimmune, some people get pn from injury or infections. I dont know the extent of damage caused by chemo drugs, but it could be that its reversible or at least the symptoms stabalize to the point they dont need drugs.
i can tell you, that docs are aware of PN but not how to proceed to diagnosed different kinds that are outside the most common causes.
My Pn was mainly tingling, pins and needles,prickling, jabs of pain, twitching, tickling, but not as severe chronic pain as some of you guys have described. i would say this started to die down, but i do not felt like 100%recovered, i still feel my nerves are still wierd.

v5118lKftfk · 08-22-2015, 03:57 AM

Quote:

Originally Posted by Neuroproblem

My Pn was mainly tingling, pins and needles,prickling, jabs of pain, twitching, tickling, but not as severe chronic pain as some of you guys have described. i would say this started to die down, but i do not felt like 100%recovered, i still feel my nerves are still wierd.

Do you know the origin of your PN?

Are you able to do most everything you want? i.e. stand, walk ?

Is it more than an annoyance ?

glenntaj · 08-22-2015, 07:27 AM

--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.

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