Help me please? :(
.....And then my hands....my fingers are tingly and when I reach for something or use the muscles in my arms it intensifies. My fingernails feel like they are going to fall off ...they have this weird pressure sensation like my teeth used to have. Now here I am asking for any and all advice on what experiences you have had, how long it lasted, what you took, tell me everything please.....this is the pits!
Gail
Comments
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I am so sorry you are having
I am so sorry you are having this proble, Mine started with the last round of chemo.
I had the same symptoms. It took Me a year to get rid of it. Each month it got a bit better. The further away from chemo the better it got. My hands are just about normal. I don't really notice it anymore. My feet still feel like my toes are wrapped in cotton.
The dr. told me about a year. So hang on it will get better.
Happy Mothers day, let everyone take care of you. Rest your feet and hands.
Hugs, Judy0 -
Hi Gail
It's been quite a while since I was on that one but I do remember how it was a cumulative thing. I used FOLFOX during the winter months and that was tough because of the sensitivity to cold. I was on it for 6 months and it had gotten to the point where my feet and hands were numb at times but not totally numb. I was still able to play guitar which was a good thing. I never was able to play the violin again (but I never played it to begin with!) Even after 61/2 years I still have slight numbness in my hands and feet but it's insignificant and doesn't really affect me. Although sometimes I have some trouble tying shoelaces but that could actually be the beginning of arthritis(?). My Mom suffers from that.
No complaints about getting old, I would only complain if I didn't!
I did find that doing things with my hands kept them limber so if there is an activity you enjoy, try to stay with it.
All the best
-phil0 -
the numbness is he pits mine has improved 3 weeks post chemo
i am so sorry your having this horrible issue with sides.
so i have tried lots of things to help, the chinese tea and diet don;t hurt either and the walking.
i got great results with reflexology as well, done 3 x 89 reflexology/lymphatic drainge massages.
also had feet in an ionic bath while camping, it seemed to help.
i think we have 2 types of neuropathy one from 5fu the numbness and theother pins and needles from oxi.
well 3 weeks and 3 days post chemo hands are almost normal and feet having a little tingling but little numbness.
still in hospital, all my supplements are at home. i think i post a few day ago.
i'll try and find it and put it in here
from memory i had b complex, mitolift, and samE for the liver but it my have helped with neuropathy. none of these natural supp gave me instant relief except one morning when hands dramatically improved.
hugs,
pete
pspost from another thread
see the folfocked thread and samE for my details.
in short I finished chemo 2 1/2 weeks ago. 12 cycles folfox.
neuropath was getting worse. you know tripping on stairs. getting blood blisters on feet, when you get stones in your sox and you don't feel them. then my hands startred going around 10 days ago.
today I woke up, and my hands, fingers are almost normal. I spent 30 minutes in bed rubbing my fingers together, to be sure i was not dreaming.
this makes me so happy.
even the feet, were having pind and needles like a few months ago.
My naturpoathic routine
was mitolift, calcium, vitamin b complex, n acetyl carnitine.
now I also take heaps of other supplements. I also suspect SAMeeeee may have had a role to play, as with 2 days of starting it my neuropathy has really improved.
I feel like dancing.
so goodluck and I hope your neuropathy improves. Nothing I have said is medical advice, its simpoly what i was advised to try by my naturopaths. I have seen 6 naturopaths in the last 3 months now.
hugs0 -
PhilPhillieG said:Hi Gail
It's been quite a while since I was on that one but I do remember how it was a cumulative thing. I used FOLFOX during the winter months and that was tough because of the sensitivity to cold. I was on it for 6 months and it had gotten to the point where my feet and hands were numb at times but not totally numb. I was still able to play guitar which was a good thing. I never was able to play the violin again (but I never played it to begin with!) Even after 61/2 years I still have slight numbness in my hands and feet but it's insignificant and doesn't really affect me. Although sometimes I have some trouble tying shoelaces but that could actually be the beginning of arthritis(?). My Mom suffers from that.
No complaints about getting old, I would only complain if I didn't!
I did find that doing things with my hands kept them limber so if there is an activity you enjoy, try to stay with it.
All the best
-phil
Thank's Phil, I sure hope it improves. Right now it's making me puretty annoyed. But better alive and annoyed than...not. Ok I will get out my putter and go outside tomorrow. Thanks!
Gail0 -
Gail
Hi sweet Gail,
Sorry to hear you're suffering from the oxy neuropathy. I think we talked about it before, but do make sure you're getting an infusion of a calcium/magnesiuim mix along with the oxy- they should be giving that as standard fare now that it's known that is supposed to help prevent the neuropathy. Maybe an additional calcium and magnesium combo in pill/supplement form would help too? Ask the onc about that one.
Also- if you're not already taking vitamin B-6 and alpha lipoic acid, that's what my chemo nurse advised to take for it. My neuropathy did mostly resolve- I also had a few rounds of cisplatin later after the oxaliplatin (during my radiation) & that made the neuropathy even worse. I would say it took maybe 10 months afterwards before it was better. My feet still feel weird, but nothing like they did before. My hands are probably 90-95% normal again. They had to go through a time period of being really tingly (I remember that it was torture to ever clap for anything when we were at a concert or show- I didn't want to appear rude, but clapping felt horrible). I remember the day when we saw some concert at my church and I went to clap and it didn't feel awful anymore- I was so relieved and realized my neuropathy was better. That was probably 10 months after I finished the cisplatin and oxaliplatin.
Hang in there- it should get better, but do be diligent with taking the supplements. My chemo nurse was really big on me taking the alpha lipoic acid capsules.
Hugs to you!
Lisa0 -
Lisalisa42 said:Gail
Hi sweet Gail,
Sorry to hear you're suffering from the oxy neuropathy. I think we talked about it before, but do make sure you're getting an infusion of a calcium/magnesiuim mix along with the oxy- they should be giving that as standard fare now that it's known that is supposed to help prevent the neuropathy. Maybe an additional calcium and magnesium combo in pill/supplement form would help too? Ask the onc about that one.
Also- if you're not already taking vitamin B-6 and alpha lipoic acid, that's what my chemo nurse advised to take for it. My neuropathy did mostly resolve- I also had a few rounds of cisplatin later after the oxaliplatin (during my radiation) & that made the neuropathy even worse. I would say it took maybe 10 months afterwards before it was better. My feet still feel weird, but nothing like they did before. My hands are probably 90-95% normal again. They had to go through a time period of being really tingly (I remember that it was torture to ever clap for anything when we were at a concert or show- I didn't want to appear rude, but clapping felt horrible). I remember the day when we saw some concert at my church and I went to clap and it didn't feel awful anymore- I was so relieved and realized my neuropathy was better. That was probably 10 months after I finished the cisplatin and oxaliplatin.
Hang in there- it should get better, but do be diligent with taking the supplements. My chemo nurse was really big on me taking the alpha lipoic acid capsules.
Hugs to you!
Lisa
Hi Lisa, the weird think is that I haven't had the oxy for about 2 and a half months. I was wrong in the original post I said 1 1/2. It's soo much worse now. I have the B6 and alpha lipoic you told me about and I bought some others today. But I so trust in everyone here that they may know more than I am doing....oh and I did always receive the mag and calcium with the oxy.
At treatment 6 my onc switched my to irinotecan. I hate it for different reasons.
I hate chemo and I hate cancer! But look who I'm telling love you Lisa!
Gail0 -
Gailplh4gail said:Lisa
Hi Lisa, the weird think is that I haven't had the oxy for about 2 and a half months. I was wrong in the original post I said 1 1/2. It's soo much worse now. I have the B6 and alpha lipoic you told me about and I bought some others today. But I so trust in everyone here that they may know more than I am doing....oh and I did always receive the mag and calcium with the oxy.
At treatment 6 my onc switched my to irinotecan. I hate it for different reasons.
I hate chemo and I hate cancer! But look who I'm telling love you Lisa!
Gail
That's right, I temporarily forgot that you were switched to irinotecan. Weird that it's hitting you now, but chemo is a weird thing! I've never tried any of the prescription drugs for neuropathy (which are normally given for neuropathy related to diabetes, but are now being given more often for neuorpathy from chemo).
Hugs to you- if you don't get relief from the supplements, you might ask about the prescription meds for neuropathy. Maybe someone else here who has taken any of them can chime in on that.
Hugs!0 -
Hi Gaillisa42 said:Gail
That's right, I temporarily forgot that you were switched to irinotecan. Weird that it's hitting you now, but chemo is a weird thing! I've never tried any of the prescription drugs for neuropathy (which are normally given for neuropathy related to diabetes, but are now being given more often for neuorpathy from chemo).
Hugs to you- if you don't get relief from the supplements, you might ask about the prescription meds for neuropathy. Maybe someone else here who has taken any of them can chime in on that.
Hugs!
I second Lisa with the alpha lipoic acid. Although it did not help Johnnybegood with her neuropathy, my husband takes it for his diabetic neuropathy which he's had for about 20 years and it makes a world of difference for him. I am also happy to say that I learned about it from a post here a couple of years ago.
Certainly hope you get some relief.
Luv,
Wolfen0 -
This comment has been removed by the Moderatorwolfen said:Hi Gail
I second Lisa with the alpha lipoic acid. Although it did not help Johnnybegood with her neuropathy, my husband takes it for his diabetic neuropathy which he's had for about 20 years and it makes a world of difference for him. I am also happy to say that I learned about it from a post here a couple of years ago.
Certainly hope you get some relief.
Luv,
Wolfen0 -
Lisalisa42 said:Gail
That's right, I temporarily forgot that you were switched to irinotecan. Weird that it's hitting you now, but chemo is a weird thing! I've never tried any of the prescription drugs for neuropathy (which are normally given for neuropathy related to diabetes, but are now being given more often for neuorpathy from chemo).
Hugs to you- if you don't get relief from the supplements, you might ask about the prescription meds for neuropathy. Maybe someone else here who has taken any of them can chime in on that.
Hugs!
My onc put me on Lyrica 1 week ago. I take 50mg at bedtime. I hope it helps!
Gail0 -
Wolfen and Gracieunknown said:This comment has been removed by the Moderator
I am taking the Alpha Lipoic. Along with about....well a bunch of other stuff. Lisa told me about the Alpha Lipoic and B6 back in Dec I think. Gracie does it help much taking the magnesium for the neuropathy? I will buy that too for my ever growing basket of tricks! Thanks so much guys!
Gail0 -
WelI , i had it for almost 6 months , but went alone little byplh4gail said:Lisa
My onc put me on Lyrica 1 week ago. I take 50mg at bedtime. I hope it helps!
Gail
little ,summer will improve the things and in certain moment you get as used to it that you don't care too much, recovery is slow as I say in my case
nearly 6 or 7 months so don't espect a daily improve just time and one day you will not even remember.I had no medicines as I had not pain but a severe sensatinon that legs and arms had fallen to asleep ,and pins and needles.Liryca only works for severe pain!,
Hugs!sorry if you thing is very positive but was my case Gail.0 -
Dear Gail,
I am so sorry to hear that you are suffering from the oxaliplatin side effect! My mum also had sensitive hand but after she stopped chemo for 2 months (prepare for the liver surgery), her hands and foots are all back to normal now.
I hope you will find a way to ease this problem soon!
Hugs Dora0 -
Let me know!plh4gail said:Lisa
My onc put me on Lyrica 1 week ago. I take 50mg at bedtime. I hope it helps!
Gail
Let me know how/if the Lyrica helps.
About magnesium- I have also heard recently that it helps with the cramping, but a word to the wise- don't take too much if you have problems with diahrrea. Magnesium is the main ingredient in "milk of magnesia", which is to help with constipation and gets things moving. My daughter has had problems with constipation and all the regular and even senna laxatives weren't helping her. We finally got milk of magnesia and boom- the dam broke free.
Take care-
Lisa0 -
Pepepepebcn said:WelI , i had it for almost 6 months , but went alone little by
little ,summer will improve the things and in certain moment you get as used to it that you don't care too much, recovery is slow as I say in my case
nearly 6 or 7 months so don't espect a daily improve just time and one day you will not even remember.I had no medicines as I had not pain but a severe sensatinon that legs and arms had fallen to asleep ,and pins and needles.Liryca only works for severe pain!,
Hugs!sorry if you thing is very positive but was my case Gail.
Pepe how long ago did you have the oxy? Is your tingling gone now? That would be good news for me!
Gail0 -
Lisalisa42 said:Let me know!
Let me know how/if the Lyrica helps.
About magnesium- I have also heard recently that it helps with the cramping, but a word to the wise- don't take too much if you have problems with diahrrea. Magnesium is the main ingredient in "milk of magnesia", which is to help with constipation and gets things moving. My daughter has had problems with constipation and all the regular and even senna laxatives weren't helping her. We finally got milk of magnesia and boom- the dam broke free.
Take care-
Lisa
I've only been on the Lyrica for 1 week. Onc told me it's normally a twice a day med but I asked him if it would make me sleepy so he said to take it at bedtime. On day 2 I took it in the am to see how it made me feel and it just made me v e r y relaxed. lol. So far after a week I don't feel any difference. I asked him about it and he said not to change anything with it for 2 weeks so I will be a good girl. But I am going to start taking this basketfull of vitimins I bought. So if there is improvement I wont have any idea what did it. But I don't want to wait another week to see if the Lyrica starts or I'll be waiting always for something.
And about the mag. OH YA!....and I know this too! I just forgot in my haste to find a relief for the neuropathy. Thank you for the reminder because I have chemo diarrhea and resection issues. I just don't know which is which yet. lol I can't wait to get on the road to find the new me!
Gail0 -
Doraluvmum said:Dear Gail,
I am so sorry to hear that you are suffering from the oxaliplatin side effect! My mum also had sensitive hand but after she stopped chemo for 2 months (prepare for the liver surgery), her hands and foots are all back to normal now.
I hope you will find a way to ease this problem soon!
Hugs Dora
Wow Dora, so glad your mom is back to normal so soon! That is wonderful! Did she take any special supplements? Where do you live? If she did maybe I can find them online. If I remember she had her liver surgery. I hope all is well with her and you too!
Gail0 -
I am sorry to hear that you
I am sorry to hear that you are in pain. The neuropathy is terrible for me too. When one stops Chemo the neuropathy still gets worse before it gets better. My onc tells me 6 months before it gets better.
My prayers are with you for a speedy recovery.
Best Always, mike0
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