So I'm a week post my third treatment of RABVD and I started to experience tingling in my fingers. The problem is that the past two times it lasted for a couple of days and it went away - this time it looks like it will stay with me until my next infusion on 8/9. I'm scheduled for 12 treatments all together. My question is - how bad could it get? Is there anything I can do to make it better? Any advise will be appreciated.
Kama
Kama,
I had ABVD as well and I also had the tingling in my fingers. I had trouble buttoning buttons on my dress shirts and opening ziplock bags became tricky. I made sure I kept my doctor informed and they said they could cut back on one of the drugs (although we never did) if the numbness got too bad.
I finished my chemo treatments in April and either I've completely gotten use to it or the numbness has gone away. ; )
Pete
Thanks, Pete. I hope my symptoms won't get too bad and they won't have to cut back on the drugs.
It's so hard for me to deal with all side effects at the same time: nausea, constipation, neuropathy, hair loss.... It seems like every single time it gets harder and harder and I still have such long way to go.
Kama
Kama,
It does seem like a lot at the time and it is hard to deal with everyone all at once. I know it's hard to imagine right now but it will pass and once you are well it will all feel worth it!!!
If you ever need to vent, or someone to talk to my email address is [email protected]
Good luck!
Pete
Kama,
It sounds like your treatment plan is about the same as mine; I did 12 infusions of r-abvd over six months.
I got numbness at about the same time that you have developed yours, if I recall correctly (that is, around infusion two or three). Everyone's experiences differ, but unfortunately, my neuropathy (the term for the numbness) has not gotten any better seven months after ending treatment (my last treatment was in mid-January).
My neuropathy is mostly in my feet, but affected my hands a little as well, and it does impair my ability to turn pages in a book or newspaper, for instance. My feet are the bad part, however, with numbness at times rising above my knees. At the worst, I felt like I was walking on pegs or stilts, and it affected my balance a little. I had a nurse tell me that she has seen numbness go as high as the waist.
I never got to where I could not feel my feet at all, although this happens to some people. I could always feel a pin *****, for instance.
The neuropathy is caused by the vinblastine (the "v" in "abvd"). The drug sometimes kills the protective lining around the nerve endings, which causes the numbness. Some people describe it as "pain," but to me it just feels like the numbness when your feet are "asleep" from no blood flow. Mine worsens with activity at times, and at other times, it can be bad even after sitting in a chair for a long period.
Some people get over this, and some do not. Some do not experience numbness at all, so there is a wide range of reactions. The numbness can be permanent.
I am in a clinical trial now for a cream to determine whether it works on neuropathy or not, and that is part of how I have come to study it in some detail. So far, I guess I am using a placebo, since there has been no improvement for me thus far.
There are drugs already FDA approved for neuropathy, but they treat the symptoms, not the cause, and they are not used to achieve a cure.
I hope that you do not get it as badly as I have had it, and let me stress that most people (I am told) who develope neuropathy get feeling gradually back, over time.
Keep in touch, and I am sure that others here may have more information than I have provided.
don
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Don,
Thank you for your comment. Although it is not what I would like to hear, I appreciate your honesty. I'm the kind of person who would rather know what to expect than be surprised by it. I just hope it won't get too bad for me.
Kama
Kama,
Your attitude is one of a thinking adult. I will just repeat that there is a very wide range of experiences with neuropathy, and mine is worse than most, but less than what a few experience. I hope it passes you by.
Other symptoms that I had were an almost total loss of taste, and some breathng problems. I now have normal sense of taste, however, and my breathing is slowly getting better.
The most postitive thing of all that I can say, however, is that abvd usually WORKS, and that is the best news of all…
Keep us up to date,
don
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Last week I had my 6th out of 8 ABVD treatments and I've had neuropathy in my fingertips/hands since treatment #1. Fortunately, I have not experienced this in my feet. I have also noticed that it causes my hands to shake sometimes, as if my fingers are weak. Sometimes this tingling is so strong that it is painful. The numbness reaches down to my knuckles at times.
The only thing that I have found that helps me is to have someone massage the tips of each finger. I know this sounds strange, but it really helps. It seems to help the blood flow back into the fingertips and relieves some of the pain and tingling.
Give it a try. It may help.
Try to stay strong. I know it is hard.
-Paul
All,
Has anyone ever used the Rebuilder device? Would be very interested in your comments.
http://www.rebuildermedical.com/
Thanks,
-Paul