Aa
Help for Neuropathy
Hi Group,
I have been reading the posts for awhile and you seem to give good advice. I am 1a, stage 2, VL was1.5 million, currently doing pegasys & copegus and I am week 28. I was undetectable at 12 weeks and have (thankfully!) had minimal sides.
I have a friend who is going through chemo for cancer and she has developed neuropathy. Unfortunately, she is having a very tough time with her treatment and now she is having trouble walking (this is a lady who climbed Mt Whitney!) Does anyone have any experience with treatment induced neuropathy? I know that she is not on the same type of chemo that we take for hep c, but many of her sides are the same types of things that we experience with treatment. I would like to know about things that can be done to help ease her symptoms. Thanks so much, Kathy
I have been reading the posts for awhile and you seem to give good advice. I am 1a, stage 2, VL was1.5 million, currently doing pegasys & copegus and I am week 28. I was undetectable at 12 weeks and have (thankfully!) had minimal sides.
I have a friend who is going through chemo for cancer and she has developed neuropathy. Unfortunately, she is having a very tough time with her treatment and now she is having trouble walking (this is a lady who climbed Mt Whitney!) Does anyone have any experience with treatment induced neuropathy? I know that she is not on the same type of chemo that we take for hep c, but many of her sides are the same types of things that we experience with treatment. I would like to know about things that can be done to help ease her symptoms. Thanks so much, Kathy
Hi Califia;
The dreaded Neurontin isn't that bad. It made a huge diference for me, post tx. I did not do PT, I have kids & dogs which keep me moving every day. Ha! I am 8 months post tx now and have just begun accupuncture treatments. Our goal is to get the pain level down & slowly wean off of the meds. I am feeling good most days, but still have a few bad flare ups. How are you feeling? Can't remember your stats? Be well, Sue
The dreaded Neurontin isn't that bad. It made a huge diference for me, post tx. I did not do PT, I have kids & dogs which keep me moving every day. Ha! I am 8 months post tx now and have just begun accupuncture treatments. Our goal is to get the pain level down & slowly wean off of the meds. I am feeling good most days, but still have a few bad flare ups. How are you feeling? Can't remember your stats? Be well, Sue
Hey I got bumper stickers and tee shirts I donated so much blood to the blood bank through our company. I know what you mean by that haunting you. I've done more unknowingly to spread it than to stop it. I still leave a large portion of the blame at the foot steps of Uncle Sam for not being more proactive. But it is what it is now and we're off to see the wizard the wonderful wizard of Riba. Don't forget to click you heals before you inject. Have a great one. Dale
There was snow on the mountain this morning. We had a school conference, then little guy & I were going to throw snowballs. Damned if the snow didn't melt in the hour we were at school :(
Yeah, I'm so glad about your rvr, think it does say a lot, , talking to my doc a few weeks ago....he figures rvr is really counting for a lot more these days, factoring in all these various studies...read an article in the SF Chronicle that you guys are expecting snow??? that would be bizarre! lil goof will enjoy it I'm sure...
And I'm sure those meds have given you a glide in your stride and a zip in your hip....now you can come on down from that mother ship!!! guess I'm going up!
And I'm sure those meds have given you a glide in your stride and a zip in your hip....now you can come on down from that mother ship!!! guess I'm going up!
Thanks for posting that!
In my case, (which has some parallels to Algernon's) with a 4 week RVR, 1.3 mil VL, advanced disease, docs can't quantify benefit of doing 48 vs. 24. Generally 1-5% increase in odds seems to be their feeling. That gives the second 24 wks a whole lot less ROI than the first 24.
So you think I should be casting tofu entrails around instead of goat?
PS You have heard of the problem with white guys & dancing?
In my case, (which has some parallels to Algernon's) with a 4 week RVR, 1.3 mil VL, advanced disease, docs can't quantify benefit of doing 48 vs. 24. Generally 1-5% increase in odds seems to be their feeling. That gives the second 24 wks a whole lot less ROI than the first 24.
So you think I should be casting tofu entrails around instead of goat?
PS You have heard of the problem with white guys & dancing?
Also, lugging around all those tubs of ice cream to those frothy female customers could be having a chilling effect on the projection equipment, if you get my drift. I know from my days at the drive-through that a frosted up milkshake machine delivers very little product. Ya might want to tuck some pink insulation down into the ol' love tent when you're hauling the ice cream around.
My friend has Multiple Myeloma, which is an aggressive cancer. I thought I would ask the question here because so many of the sides that she experiences are the types of sides I hear about from people going through Hep C treatment. Multiple Myeloma attacks the bones and she has already had to have a part of her spine replaced because the cancer ate right through it. She has been on chemo, radiation and had a stem cell removal procedure done twice. All of that was supposed to buy her two years (there is no cure). It has come back early. If she stops the chemo now it
Debby if I could chicken out I would. The disease is worst than the ***** though ha! I shot myself in the big toe one time and pinned myself to the hardwood floor. Had to cut the shoe off pry my foot from the floor cut the bottom of the nail off the bottom of my big toe and then jerk the barbed nail out of the center of my big toe. Had too so just did it but when I went to the clinic and they said tec. shot I started shaking and dreading. I know its a head game but I'M not afraid of spiders or snakes so I got that going. How's the fudge sickles holding out? Dale
LOL relate relate relate! When I first heard you had to give YOURSELF the shot I came in here and posted so many OH MY GOD I CAN'T DO ITs...and HOW DO YOU DO ITs...I am shocked I wasn't banned. I freaked out completely.
My little reward system (aka the Fudgicle cure) is working out well though ... if I do my shots and remember my Riba I am allowed an extra one at night ;-) And we all know that GENERALLY (not including this disease as Strator said) the more the merrier! One pop just gets me started on wanting ANOTHER! :)
That's the best thing about this disease - the ability to enjoy food to excess for the first time in my life ahhhhhh.
My little reward system (aka the Fudgicle cure) is working out well though ... if I do my shots and remember my Riba I am allowed an extra one at night ;-) And we all know that GENERALLY (not including this disease as Strator said) the more the merrier! One pop just gets me started on wanting ANOTHER! :)
That's the best thing about this disease - the ability to enjoy food to excess for the first time in my life ahhhhhh.
One pop just gets me started on wanting ANOTHER!
______________________________________________________________
You do huh.:)
______________________________________________________________
You do huh.:)
PKcolo: Chance of sexual transmission is 3-5%.
Goof: 3-5% per what? Per boff?
Cuteus: per insert
_____________________________________________
So these days that's like 1% per attempt, LOL!
Goof: 3-5% per what? Per boff?
Cuteus: per insert
_____________________________________________
So these days that's like 1% per attempt, LOL!
So these days that's like 1% per attempt, LOL!
Consider your self lucky then. You are the man
Consider your self lucky then. You are the man
Treatment related neuropthy includes involuntary twitches and movement like hitting the enter button TWICE. Good thing that's a sx you don't have. Get the draw for the pcr?
Hi Kathy;
Congrads on being undetectable! And great that your sides are minimal. What a wonderful person you are caring for this friend and searching for solutions or help with her pain. I am so sorry to hear how bad things have gotten for your friend. Now as for the neuropathy, I will share my story, but I am sure my pain is nothing compared to your friend.
I developed severe neuropathy from tx ( mainly post tx ) and was prescribed oxycotin ( pain med ) plus neurontin ( epilepsy med ) The combination did not get rid of the neuropathy, but it kept pain to a minimal. From what I have been told, the neurontin " blocks " nerve signals and hense tells your brain there's no pain. Also, B-12 deficiencies can be linked to neuropathy. You should have your friend get her levels checked and also inquire about neurontin with her doc. It really helped me a lot.
I have a very good friend that fought Lymphoma for 3-4 years. She had many, many, rounds of chemo and finally the bone marrow transplant. She developed severe neuropathy and was given neurontin as well. She said it helped her a lot too. She is cancer free today, so never give up hope. She was supposed to be dead years ago and all the docs were wrong. Only God Himself knows when we will pass on. Hope this helps. Sue
Congrads on being undetectable! And great that your sides are minimal. What a wonderful person you are caring for this friend and searching for solutions or help with her pain. I am so sorry to hear how bad things have gotten for your friend. Now as for the neuropathy, I will share my story, but I am sure my pain is nothing compared to your friend.
I developed severe neuropathy from tx ( mainly post tx ) and was prescribed oxycotin ( pain med ) plus neurontin ( epilepsy med ) The combination did not get rid of the neuropathy, but it kept pain to a minimal. From what I have been told, the neurontin " blocks " nerve signals and hense tells your brain there's no pain. Also, B-12 deficiencies can be linked to neuropathy. You should have your friend get her levels checked and also inquire about neurontin with her doc. It really helped me a lot.
I have a very good friend that fought Lymphoma for 3-4 years. She had many, many, rounds of chemo and finally the bone marrow transplant. She developed severe neuropathy and was given neurontin as well. She said it helped her a lot too. She is cancer free today, so never give up hope. She was supposed to be dead years ago and all the docs were wrong. Only God Himself knows when we will pass on. Hope this helps. Sue
Icecream man whats up? I know haulin that Ice cream to the girls out there, keepin them happy! Ha I agree with goof, haulin that stuff could get ya downn.
Dyce
Dyce
Hey guy, having a better day? Sleep under that bed last night?
Think all's safe tonight. Best to you
Think all's safe tonight. Best to you
OMG! goofy! how is your brain wired?? That is hilarious! a new twist to the story! LOL!
I honestly did not see that one when I posted. we have to be on our toes here with you (oh gosh! is this one carrying a hidden twist too?)
KSK; please do check the vitamins mentioned
I honestly did not see that one when I posted. we have to be on our toes here with you (oh gosh! is this one carrying a hidden twist too?)
KSK; please do check the vitamins mentioned
Doin better today thank you, I'm gettin used to the work and tx thing ya know. Alls quiet ,so maybe tonite I can come out of hiding. Ya know, a guy gotta protect himself.
Dyce
Dyce
sounds like you are a good friend...hopefully, she'll find some better answers than she's been getting...peace and blessings to you both...and you are right, hearing about your friend does put a lot of our problems into perspective...
You want to hear a real bummer/? I had no phobia about needles, got mine the old fashioned way running around with a bunch of viet nam vets back in the late 70's, but because I have no problems with needles, I gave blood about twice a year. I am A-, so only 7% have my blood type... and guess what they got from all my good will?? That really haunts me...
KsK: Nortriptyline and other tricyclic anti-depressants are usually prescribed to blunt moderate pain, and neurontin for more severe pain. I'm currently taking low dose Nortriptyline (too chicken to deal w/ the prescribed Neuontin) to take the edge off of painful hands and feet, and am happy to report it's working. At least I'm now able to walk with more ease and can tolerate touch and light massage, as the key is to aim for full movement and full sensation.
Everyone is right on it about the B vitamins. I somehow developed a B-12 deficiency--still trying to figure out why--which definitely triggered neuropathy during tx. I've been prescribed weekly B-12 injections, followed by a year of monthly shots, and after only two of them I can already feel a difference. Suppression of intrinsic factor, which is necessary for B12 assimilation, can be autoimmune in origin, or even a response to toxicity. Chemo and anti-viral drugs are notorious for triggering neuropathy.
Your friend is lucky to have you, and I hope that in a couple of years you both will be feeling well enough to climb the heights together.
Bostongirl: Tell me everything! Are you doing any physical therapy? What is the dreaded Neurontin like? And how are you feeling in general?
Everyone is right on it about the B vitamins. I somehow developed a B-12 deficiency--still trying to figure out why--which definitely triggered neuropathy during tx. I've been prescribed weekly B-12 injections, followed by a year of monthly shots, and after only two of them I can already feel a difference. Suppression of intrinsic factor, which is necessary for B12 assimilation, can be autoimmune in origin, or even a response to toxicity. Chemo and anti-viral drugs are notorious for triggering neuropathy.
Your friend is lucky to have you, and I hope that in a couple of years you both will be feeling well enough to climb the heights together.
Bostongirl: Tell me everything! Are you doing any physical therapy? What is the dreaded Neurontin like? And how are you feeling in general?
this was found in the Projects of Knowledge listserve (if someone finds it interesting or relevant)
"I recommend continuing treatment to 48 weeks in HCV genotype 2 or 3
patients
who still have detectable virus at week 4 based on the recent papers by
Dalgard (Hepatology 2004), Von Wagner (Gastro 2005), and Mangia (NEJM
2005)
in which patients like these had between 29% and 56% SVR for treatment
stopped at 24 weeks.
I think the longer duration of treatment may reduce the chance of
relapse.
This is more relevant in a patient with advanced fibrosis, high viral
load
at baseline, greater than 5% fat in the liver biopsy, or insulin
resistance,
like this one.
Marcelo Kugelmas, MD, FACP"
"I recommend continuing treatment to 48 weeks in HCV genotype 2 or 3
patients
who still have detectable virus at week 4 based on the recent papers by
Dalgard (Hepatology 2004), Von Wagner (Gastro 2005), and Mangia (NEJM
2005)
in which patients like these had between 29% and 56% SVR for treatment
stopped at 24 weeks.
I think the longer duration of treatment may reduce the chance of
relapse.
This is more relevant in a patient with advanced fibrosis, high viral
load
at baseline, greater than 5% fat in the liver biopsy, or insulin
resistance,
like this one.
Marcelo Kugelmas, MD, FACP"
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