Chemo failed for me and left me with neuropathy. This can be controlled somewhat with physical therapy, although I still feel like a drunk stumbling around at times I am now in radiation and the neuropathy seems to be worsening. Has anybody else had the same experience?
Hi Vern, well I have NHL and multifocal neuropathy which I am told is caused by an antibody which is depleted by the nhl (or by chemo). I am seeing the neurologist this Friday to discuss treatment options which may include an infusion of immunoglobulin once a month for six months to restore the antibody which is known as iMg.
The wrinkle is that I have not had chemo but did have 40 rounds of radiation in an effort to kill the cancer early (failed). Neuropathy is fairly common following chemo, especially if vincristine and related drugs are part of the regimen. My reading indicates that recovery will be gradual over weeks or months but should occur over time.
My situation is a little different in that the neuropathy is not chemo induced. I am told that this situation occurs in 1-2% of nhl cases. I am working with the neuro and the oncology folks to try and figure out what impacts trying to treat the neuropathy will have on my options for chemo down the road. So far, not many answers are forthcoming from anyone.
Good luck and good health,
Kermica
Thanks for the input, Kermica.
Nobody has mentioned the immunoglobulin infusion possibility, and in my situation it may not be applicable because of the differences in origin of neuropathy (chemo vs radiation). But it is something I can pursue. Basically my neurologist said my neuropathy cannot be cured but it can be tempered by retraining muscles to respond differently to nerve impulses.
I hope the chemo therapy will work where the radiation did not.
Keep the faith,
Vern
Thanks, Vern. I saw the neurologists and learned some more about neuropathy. My condition is motor control neuropathy and is directly caused by the lymphoma affecting an enzyme on the mutating cells, apparantly. That is why the IVIG is an option. In chemo induced neuropathy is is sensory instead of motor and IVIG will not help, unfortunately. At least that is what I was told yesterday. I did not have any neuro issues after my radiation treatments so don't have any good input for you on that question.
Before I do anything, I am having another PET on Monday as the lymphoma is active and, I believe, advancing. My oncologist and I have a lot to discuss when I see him on Friday as I have read that the GM1 antibody levels are often elevated in marginal zone lymphoma (which was identified in my original biopsy report but dismissed by the cancer center who did the second opinion). I also have concerns about transformation given the rate of advancement I have experienced for what is supposed to be a slow growing cancer.
So, i am doing nothing about the neuropathy for now while I sort out the cancer issues. The neurologist say I should expect slow detrioration in motor function but I have also read that Rituxin is a possible therapy for the condition. So, nothing but uncertainty and doubt here at the moment as the choices seem to be going around in circles and none provide clarity. I'll see what next week brings but will be holding off on the IVIG for sure while I sort out the lymphoma situation.
Hang in there, man, and I wish you good health,
Kermica
Kermica:
I think you are on the right track, putting first things first. I have a lot of issues on the back burner right now until I know the outcome of the current round of therapy. I have profound diffuse peripheral neurography and it raises an issue of sensory issues, especially safety from falling.
You need to work on the lymphoma-related issues first; but in your case, it sounds like you may be able to work on nueropathy-related issues at the same time because you have drugs available.
I don't know how you may feel about adding yet one more drug to your regimen, however. I have been on so many different drugs over the past year, I think I could open a drugstore with everything I have in the arsenal right now. I am trying to minimalize drug intake as much as possible.
There are also many emotional issues associated with cancer treatments that it is difficult to work on the cancer side without working on the emotional side as well. One of the big issues is the hurry up and wait syndrome. The medical community wants CTs, PET scans, MRIs, blood work, and biopsies, and you play the waiting game for the results. In the meantime, you wonder how much the lymphoma may be spreading while you have your life on hold. Some of the testing-to-result ratio can be weeks and weeks. You have to wait to get the tests scheduled, then you get them, and then you have to wait to meet with your oncologist. In the meantime, you find out the results of the tests may be nondefinitive, necessitating even more testing and waiting.
The stress of it all has been enough to drive me into counseling. I am 17 months into this type of confusion already and am a wreck because of all the uncertainty.
I hope you get some long-awaited answers quickly. Just know you are not alone in diagnosis limbo. I am fearful that the current radiation treatments may need to be augmented by even more of them in the near future. But we won't know the answer to that until a suitable time has passed after the current treatments are completed on Friday and more tests get under way to find out their effectiveness.
Hang in there
vern
Vern, thanks. I have been on this trail for two years now and we have been treating it as an indolent, low grade follicular lymphoma. I started out as Stage 1 which is why radiation was initially used to kill the cancer in a cure attempt but they missed a second node (so I was actually stage 2). We hit that one with radiation as well and I was in remission from July last year to May this year though since the neuropathy hit in April I don't think the remission was actually that long. I am now Stage 3 as the newest tumors are across the diaphragm from the original ones.
So far, no drugs but I think that may change not because I want it to (I'm willing to ride the watch and wait train as long as possible) but because things seem to be accelerating.
I agree with you about paying attention to the emotional side of things and for me that means being open and realistic about what I am dealing with here. My family and my employer are both incredibly supportive of me so that helps a ton in making every day count in a positive way which I strive to do.
The testing cycle is a strain. I have had 5 PETs, 4 C/Ts, ultrasound, MRIs and, of course, enough blood draws to fill a gallon jug at this point. The other part of the process is making sure that my oncologist understands that I am fully involved in this process and need to be treated as a partner in decision making. That was a struggle but I have that part of things where I need them to be at this point.
Anyway, I'm heading out to hear my daughter play with her statewide orchestra (she has been in a four week camp for orchestral studies, plays the tuba). Today is their final concert in and is in a major venue. That is a good example of what is really important. Enjoy your day as I will mine.
Good health,
kermica
I just want to say, for whatever it is worth, I had neuropathy during my treatment for NHL large B Cell Lymphoma. My fingers were numb and I could not do some task. I also tended to burn my fingers while cooking.
When I finshed my full course of chemo(s) I had numb feet and hands. Worse, about two months later if I walked or did much they would hurt and cramp. Did I say hurt? The good news is I swam and walked this summer and now just 3 months out of Chemo it is fundamentally gone. I get an ocassional wave of numbness through my right hand. So I am just saying, or hoping for you that it might go away. Be sure to drink lots of water.
Be Well,
Zoey
Thanks for the encouragement, Zoey. I keep stumbling around looking like a drunk right now. It was bad before I started the radiation therapy, but it seems to be worse now. I have numbness in my legs at time and there are times when it seems my knee is giving out and I feel my legs will not bear any weight when I take a step.
I have found that swimming has helped some health issues over past years, but I have not been in a pool seriously since the cancer treatments began because I could not risk picking up infections. I seem to have done that enough on my own anyway. I am supposed to be finishing up the radiation treatments this week, so maybe I can concentrate on taking care of some of the side issues.
I am 9 months out of chemo but unfortunately into radiation because new nodes were discovered via PET. I am meeting with my oncologist today and hope to come away with some encouraging news from that side. Thanks for your input.