Neuropathy and accupuncture

[Slewis7313]

I have historically been somewhat sceptical about some alternative treatments, but when you are fighting the fight, it seems to open the mnd a bit. I am doing pretty well on Folfirinox, though the Neuropathy is starting to be an issue.....not really painful, but never goes away. On a cold day, it affects my tongue, cheeks(face) and even my ears.

I have made an appoitment for next Tuesday for an accupuncture session with someone who is experienced with the procedure to alleviate Neuropathy symptoms. I am actually optimistic that it will help and will of course report back after the treatment.

Has anyone else tried this?

Steve

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[sandraW]

No Steve, but will wait to hear if it helps as Trevor is struggling too. We asked to slow the oxilaplatin down after reading your post and that has helped, thanks for your input. Trevor finished up having the second half, of the infusion, slowed down even more as he had yet another reaction during treatment on Monday, take care sandrax

Ps one of my friends had accupuncture for pain and she did feel it helped to a degree.

[SusannaUK]

Hello Steve,

My husband has acupuncture every week. I don't really know why he started it (I think it was because of his muscle pain), but he was told that it might help him and relax him a little bit. He likes it a lot and he says that he feels much better after acupuncture. It worth a try. I hope it will help to you.

Susanna x

[Slewis7313]

I have put the acupuncture on hold for now as my Neuropathy is changing. It no longer reacts to temperature changes but is constantly in my toes and fingers. If I stretch my legs or arms, it becomes more ponounced moving up my shins and into my palms. I have agreed to drop Oxaliplatin totally for now to see if the situation improves. Has anybody out there had a similar experience with Neuropathy? Whilst not painful, I am concerned that it seems now to be constant even though I am on a short chemo break and haven't had Oxaliplatin for nearly 4 weeks!

Steve

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[J_T]

Might it not still help Steve? Something that isn't going to harm you but may help is worth a shot maybe?

Julia x

[nikkis]

Hi Steve,

Pauls neuropathy has started to get slightly worse again recently, and is also constant. He has been on amitriptyline for most of this year which has kept it under control,but I guess with the weather changing it has become more of a problem. His proffesor wanted him to try gabapentin,which he did for a day last week, but he reacted with a high temperature, and generally felt awful, so we stopped that. We have been told that gabapentin can be very effective though if it agrees with you! They have reduced the Abraxane twice already , so we are not keen to do that again. I think the next move is to see if we can increase the amitriptyline, failing that the prof says he will send him to see a neurologist (we are not keen as that is another trip to London).

Not sure if that will help you, but wanted you to know you are not alone with those tingling toes and fingers!

Nikki

[Slewis7313]

Thanks Julia & Nikki. The acupuncture is only on hold and I expect to restart that when the time is right. I just did not want it to mask any potentially more serious issue for now. It's good to see there are other options if this continues to get worse. I have chemo (number 12) again tomorrow, but without Oxaliplatin. I'll just have to keep an eye on how things progress, though it seems worse in my hands again today. Weather is wet and cold which probably does not help.

Thanks again!

Steve!

[sandraW]

Hi Steve,

I think the cold weather definitely does make the neuropathy worse, as Trevor is having more trouble too, now the weather has changed. He says he can't feel his feet, they are numb virtually to his heels,sometimes he has trouble doing up his shirt buttons, and his fingers tingle constantly, worse when they are cold. He has had 6 Folfirinox cycle 1 and now a further 4 in this cycle, I suggested we mention it to the Prof when we see him on Monday, but I think he is frightened they will stop the treatment, so he doesn't want to say anything.So far he has not mentioned it spreading further into his hand or up his legs, so can't help there Steve.

When he had his 4 month break from treatment the Neuropathy did improve, but then he went through a stage after about 2 months where he had a different tingling similar to the pain he had in his tummy after his surgery, when the specialist nurses said the nerve ending were trying to re route after being cut, that was then replaced by the normal tingling when he went back on treatment, hope that makes sense.

Hope it all improves for you soon, take care sandrax