HI- I appreciate you sharing your experience even though we still "grope in the dark"... I am curious where your live- not in US? I haven't tried neurontin or other drug's because I CAN tolerate the achy-tingling and swollen feelings... it is incomfortable, but not intolerable, and if the drugs only mask the sensations for the time being, not actually reduce the symptoms, then why bother.... I did try anti-inflammatory in high dose for awhile but could tell no difference. I don't regret taking the Ox. but do wonder if I shouldn't have spoken up a little earlier and gotten off of it a dose or 2 earlier than I did... but overall I count my blessings of being alive and not having WORSE symptoms from the Ox. as I have heard... I can breathe and I get up everyday... I am sorry you're having such a struggle! I do still have radiating tingling in fingertips especially, and I can feel it up my legs.. It's been 13 months post-chemo and I can tell no improvement since side-effects "settled in" - as they were worse for a couple months immediately following treatment. I am hoping but not really looking for it to get much better either! I do still want to see from time to time if discoveries are made or any therapy actually helps to diminish all this.. my neck bothers me more than anything as it is more stiff and strained feeling all the time, as if I have held my head at a strained position for along time...it's worse when I look down, and that's like most of the time- I clean teeth, have to look down, it's kind of a strain to always hold every book at eye level etc... I've thought of going to a chiropractor and seeing if they have any suggestions... anyway, this is long enough, I haven't checked on here in a long time and am going to respond to another message also on this.. I guess let's hope for long life, and that others may learn from our treatments.. I would have like to have known more myself, but still making those decisions is hard when it's all new territory for the patient and so many different effects on individuals... I do really hope the calcium/mg. treatments are being done for current or future patients... progress may be at a snail's pace for the oncologists who make these decisions I fear !! Blessings to you, and I would be happy to hear from you as time passes... take care! Natalie B.
HI Davide- sorry so long in responding... I don't really get on the computer much- I am a busy mother etc.... anyway, I was wanting to tell you that I also had/have the Lhermitte's sign, didn't know anyone else knew the term, the reaction was noticed during chemo, a friend of mine would mention it also, and at first we called it a "wave" or shock going thru our whole body, but we didn't know at first what caused it, we'd be sittin taking our chemo, and there it was.. but later I realized it was any time I looked down/bent the neck... that reaction itself is gone, but if I go quickly down steps or am running while looking down, I again feel the "shock" at my neck,... so it transformed from the initial "Lh-'s sign", to a general stiffness and strained feeling that is constant, and it always feel like I must not be holding my neck right, as if I am straining it in an awkward position,... I tell myself to watch my posture, but I do look down alot which feels the worst, while cleaning teeth, reading,paying bills etc... sigh.. oh well, have to adapt best as we can!! I am still looking into possible therapies, my neck bothers me more than the achy feelings in my fingers and the tingling in feet,and my feet swell, have to tie shoes loosely.. I don't expect it to get much better but still am open.. I just responded to another fellow on this, so you may be reading some of this twice, so I won't go into every detail.. I got my infusaport surgically removed last month, and now may try some massage therapy, I do wonder about some light dose of muscle relaxer helping- I know full doses can make you sleepy,- I DON'T need that! I am in general needing more sleep than I used to and my joints (chemo induced arthritis) ache also, but it is tolerable,.. sometimes I forget what it was like to feel normal! But overall, I (we) should be thankful we are alive and that the cancer didn't progress to Stage 4, which is very difficult to conquer... I am starting on aspirin more regularly now, in case that may help w/ circulation... unsure of dose, doing 81 for now, just started that after port-surgery, just in case.. I know my circulation is not what it used to be, I can swell if pressure is put on hands or feet or legs...I wish you well, and would be happy to hear from you also or anyone from time to time and see if there is further progress..it has been 13 months post chemo now...blessings to you! Natalie B
HI- glad you responded to me... I do appreciate your advice and tips- but I don't want to take any drugs if it's going to be never ending- if it doesn't really help improve it all.. I am living with it ok, but it is uncomfortable, not what I'd say is painful, I am pretty tough...!achy, I don't like grasping/squeezing things long, but I have to - I clean teeth and have to put lots of pressure on my fingers/joints, I am glad I can still work really! I was a little jittery first couple months but it "settled in" to achy/some swelling and always tingly... I've responded to 2 others on this site so I won't go into all the same details... but I do thank you for replying to my message, and I thank all others who share on here- it's rare to have anyone to talk to about all this .. by the way- where do you live? I'm not a stalker, just curious what part of the world we're sharing from! I wish you the best- I don't really think the symptoms will get much better, but who knows... we'll see..! Overall, I'm just glad to be alive, I went to several funerals last year, all cancer, 2 were colon, I count myself blessed to have had my cancer reveal itself at stage 3- which it did on it's own, I had a blockage and had hardly any symptoms, and at age 42, they don't test for it... but the blockage caused some sudden symptoms that took me to the doctor- I am just glad I had not progressed to Stage 4! ok- enough from me- I don't get on computer much, but when I do, I can be long in writing!!! Let me hear how you're doing from time to time! Blessings to you! Natalie B.
Hi Natalie, as you guessed I am not in the US, I am American/French but live in France and was treated in Switzerland (Geneva). The oxaliplatin treatment was developed in France, so there ought to be the most experience here. However, there are few Cancer forums in France so far. Just to provide a bit more info, I am 52 and had a similar experience as you, the tumor caused a complete intestinal blockage so they had to operate and in the biopsy found it was colon cancer (even though it occured in the small intestine just before the junction with the colon). Thus the colonscopy I had a few months before just missed seeing it. I am also glad to be alive but I must say some days are quite hard to get through, the contant tinglings wear me out mentally. I am glad you are able to cope without drugs, I wish I could. I dont have the neck problem you have nor joint problems that Davide reported. Hope to hear from other chemo-induced neuropathy sufferers, although I wish there werent any! Best of luck, Alan H.
Hi Alan, I'm one of the younger members of cancer forums, having ended my 12 Oxaliplatin Cycles 2 month ago and I am living as well in Europe (Germany). Obviously I am developing a neuropathy (hands, feet) which worries me more and more. Thus, last week I went to a neurologist who offered me an antiepileptical drug for treatment. This shocked me.
As I worked for long years as a pharma-PR-manager I had also served a neurological enterprise, doing mainly press-features of international congresses. So I am not even pure lay. This lays some years back, but antiepileptical treatment if one isn't epileptical, this seems a bit overdone to me. Especially if this won't cure and just soften aches and symptoms.
If one has worked for pharmaceutical enterprises one gets a bit careful and I do not intend to enlarge turnovers, when one just searches for more money-worth indications of a drug.
Perhaps my point of view is a bit hard, but I rejected this psychopharmacological therapy. Aren't there alternatives?
Please excuse my English, as I am not native. Gaby.
Hi Gaby, since I'm not a phamacological expert I can't say too much based on a clear knowledge of the subject. However, my understanding of why anti-epileptic drugs are prescribed is because they do relieve or at least reduce the symptoms effectively. From what I read, the Rivotril (anti-epileptic) acts to block or attentuate certain nerve transmissions which is what is needed in the case of PN (peripheral neuropathy) as well as for epilepsy. I have a friend that takes this at low doses (like me) for a nervous problem know as "restless leg symdrome", where your leg moves around (when lying down) outside your control. If you read the uses of Rivotril they include sleep disorders, as a sedative, and against anxiety and panic attacks. I agree that I would not really wish to take this sort of drug unless it was absolutely necessary. I feel this was the case for me as the incessant tingling in my hands and feet made life unbearable. I could literally do nothing except lie down or the effects would drive me insane. After a few months on this drug the PN symptoms changed a bit and the Rivotril no longer was fully effective to reduce the tingling to a manageable level. This is when I tried Neurontin (gabapentin) which at a fairly high dose was effective enough to allow me to have a life which is highly limited but tolerable. I mean by this that I cannot do anything highly active (exercise), which is almost everything I used to love to do (mountain climbing, skiing, running, biking). If I even walk up a few flights of stairs, the PN symptoms increase dramatically.
The Neurontin is more typically prescribed for PN and if you read the forums on PN you will find many PN sufferers who use it. The PN I have is not painful but rather highly annoying (it only becomes painful if I walk a lot or if I use my fingers a lot). However, many PN sufferers (especially from diabetes or AIDS) have mild to extreme pain and the Neurontin seems to be effective for that.
I would not suggest people use these drugs unless the PN is to the point that one cannot function normally anymore. Note that standard pain relievers did absolutely nothing for my PN. I believe my case is exceptional since the Oxaliplatin side effect studies claimed only 1% of patients had PN to the level of disrupting normal life style after 1 year (its been 1 year and 4 months now).
I have searched the web quite a bit to find something that would "cure" the problem but as my neurologist said, the problem is that the platinum in the Oxaliplatin destroyed the myelin of the long sensory nerves. Its up to the body to regenerate this. One should do everything possible to give the body what it needs for nerve regeneration (vitamin B complex). I've seen nothing in the medical literature which can speed up this regeneration. It may be the case that for whatever reason, the body cant regenerate or it takes a very long time or you get only partial healing. My neurologist and oncologist would make no predictions whatsoever for my case, apparently it is totally unpredictable.
I hope your PN is more "standard" and will go away after some months. It will be your decision whether to take any drugs. I have read that some improvements in symptoms have been reported by PN sufferers with massages, infra-red treatments, electrical stimulation treatments, lidocaine patches, and many different food supplements (too many to mention). I tried a few supplements but they seemed to make things worse, even at doses which were much lower than prescribed. If you do a web search for peripheral neuropathy you will find some forums with lots of info on things to try. Here is an example: http://brain.hastypastry.net/forums/forumdisplay.php?f=206
What I found was almost none of the PN sufferers in these formum had it from chemo. I think it is because there are so few of us that have PN for a long time like myself. Well, my fingers are getting sore, I've written a book here. Hope some of it is of use. Good luck. Alan.
Dear Alan:
Thank you so much for your so detailed answer. It helped me very much. I think you are right. At certain stages these pharmaceuticals may be a relief, as easening pain and one should be grateful for that. Vice versa you are as correct: As long as it is bearable one might wait what time shows.
I did a lot of research myself (feeling a bit reminded of my former profession as a PR-Manager Medicine in mainly journalistic fields I even enjoyed it!) and I have to state as well - up to now there are merely no alternatives.
However, I'll search on and if I should stumble over something, I'll give you a note.
I even felt a bit ashamed reading your answer. Enduring that for such a time and little me, suffering now for 2 month (and having screened studies of Oxaliplatin itself)feels shocked by a neurologist who proposed Pregabalin to me (which seems to be the most effective up to now). It was, because these feet annoye me sometimes terribly up to aches, like you I can't do sports any more as it used to be. (I love swimming in long terms, crossing waters hundreds of meters, and when I do it now, after half an hour I have to stop and even to worry, how to come out of the water with legs like this.)
I'm quite young for coron cancer, 47, so this illness hit me right at a spot out of a sporty and, as I had thought, healthy life.
I changed nutrician now. Tried vitamin B which induced practically the contrast - things worthened. (Ts.)
But I'm still in good mood. Although I had to build it up. You seem to have done as well. Mentalitiy seems to help a lot. For example I hang at the border of the pool, wondering to come up the steps and just tell me "Gaby, you'll just make it, and if not you'll just ask someone to help yourself" and up I step.
I intend to pamper my feet and nervs also mentally. "Come on, Loves", I'll say. "Let's walk a bit."
Oxaliplatin is a young drug. Who knows, there might be quite some cases later to state - took 18 month, 20, and then all of a sudden neuropathy declined. Also in your case.
I keep my fingers crossed for yourself and myself.
Greetings to France!(Lived in Nice for a while, I like this country.)
So thanks once more, incredible how you many words you were giving, every sentence a message. I'll message back when news occurs. A Roche-manager promised to search and he'll give me notice and I await news from a very reliable source of alternative medicine.
Gabriele
Hello all - I've just discovered this website and have read all of the posted messages. I am 42 and have just completed tx for stage 4 colon cancer (12 rounds oxaliplatin). I am one-month post tx and have just gotten the fabulous "cancer free results" from a PET scan so, on many levels, I am rejoicing. However, the neuropathy that I experienced during chemo has actually worsened since the treatment ended, and I went searching on the internet for info. Can't say that I find it all very promising (!) but am still hoping for the best. My oncologist has recommended B-6 vitamins - was wondering what any of you might know about B6 and B12, as well. Also, in addition to the extreme tingly sensation in my fingertips, I have recently found myself losing my balance from time to time. Nothing debilitating, just annoying and worrisome. Is this something related to the neuropathy? Hope to hear from you - Now that I know that this message board exists, I'll be sure to check it frequently. Blessings to you all - Lindsey.
G'day (I am from Australia) all. Like Lindsey I have just
discovered this website and have just read all the messages.
I probably have the longest experience of all people in this
message board so far. I was one of the 2040 people who
formed the cohort for the first international trial (known as
MOSAIC - you can check this on the web) of oxaliplatin/5-FU/
leuvocorin, aka FOLFOX-4. That was from January to June
2000. I remain under scrutiny with MOSAIC although it is now 6
years since the operation (Hartmann procedure) and I continue
in remission.
In 2000 I had 12 straight fortnightly cycles of FOLOFOX-4
treatment and seemed to get through them quite well. I even
made short work trips between cycles to places near to
Australia in the South Pacific. During the treatment I had the
usual problems with tingling toes and fingers, mouth ulcers...
In July 2000 I had an operation which reversed the Harmann
procedure and life appeared to return to normal.
But about 3 months later I started to experience the symptoms
of full-blown peripheral neuropathy, as so many of you have
described them. It affects my toes and feet, extending up my
ankles and sometimes reaching my knees. I have not had too
much pain in my hands, but I am clumsier than I used to be,
even allowing for the fact that I am 69. I also have degenerative
osteo-arthritis, mainly in the lower back and knees. When the
two are active together they "sing" in devilish unison. Getting
enough sleep is always a problem. I tried anti-convulsants to
get sleep but that did little for me. Other pain killers did little.
My next step will be to perhaps try Amitriptyline (brand names
here are Endep or Elavil) which, as well as being a treatment for
depression, is also a sedative, and is useful for patients with
insomnia, restlessness, and nervousness. It has also been
found to be helpful for treating fibromyalgia and symptoms
related to chronic pain.
In 2001 oncologists and neurologists seemed to know little
about oxaliplatin and PN - I was actually told that I was the
only person in the global MOSAIC experiment who had these
symptoms and they must therefore be caused by alcohol abuse
(I had worked in the media worked for many years and had
once been a "moderate", even heavy, drinker at times)! Sadly a
low alcohol regime has done little or nothing to help and the
myelin sheathing is just as damaged as ever it was.
I recently recognised that I could not put in a full day's work
effectively and so I have retired. Well, more or less "retired" as I
am now a volunteer with some ten community, state and
national cancer institutions. The important thing about this
kind of work is that I can work at my own pace and usually
catch a power nap with it gets tough.
So - THE BAD NEWS FOR ALL OF YOU IS THAT AFTER MORE
THAN FIVE YEARS MY PN HAS NOT IMPROVED VERY MUCH. I am
resigned to living with it as best I can for the rest of my life.
I am trying to keep my general state of well being as high as
possible. I now have a well balanced diet and have lost some,
but not yet enough, weight. I take mainly Glucosamine
Sulphate and Omega-3 fish oil (with clinician approval) to keep
my arthritis in check. I am taking mega vitamin B for the PN -
that's all. I massage my feet and exercise for about an hour
every day - some flexibility and strengthening exercises and as
much, and then a little more, walking as my feet will allow
without giving me hell. When that happens I have a mini cycling
machine which is boring but helps by lowering the impact on
my feet and legs. (I have obtained some useful exercises from
the (US) Neuropathy Association and from the Washington State
University (Seattle?) web site.) I wear shoes as seldom as
possible; sandals whenever possible.
Problems? Occasional bouts of (mild?) depression and periods
of inertia - doing nothing when I know there is lots I can do.
Finding somebody who knows the problems and can
communicate (I have helped form a cancer patient-to-patient
network at the hospital where I am treated - talking with
patients in the chemotherapy ward helps me as much as them,
I think). And most of all, just living through the periods of pain
and discomfort.
Reading this message board has made me realise that there are
people who are having a much worse time that I am. I wish I
could give you more comfort, but I am afraid that it is likely to
be a long road ahead for most if us.
Best wishes...........John
Hello Lindsey, I am am sorry to say, welcome to the club. You can read my history in previous posts so I wont repeat here. I will reply to your questions: B6 and B12 and in fact nearly all B vitamins are fairly important to the nervous system. A lack of one or more of them could result in nerve damage or inability to heal nerve damage. The most critical from what I've read is B12, without this you can get PN. However, it is very rare to have B12 deficiency. I take general vitamin supplements (it covers nearly all vitamins) just to make sure I get enough although the doctors say if you eat a well balanced diet, there should be no problem.
Concerning your loss of balance, I had this too at the begining (the start of post-chemo PN) and I believe it is due to the lack of feedback from your feet to tell your brain whether or not you are losing your balance. I noticed it happened mostly when my eyes were closed. When I was looking, my eyes compensated this loss and I didnt have the problem. It was most dangerous when washing my hair in the shower! Surprisingly, this got much better with time, either my brain got used to the scrambled info from my feet or my feet sensitivity improved. I suspect both. I can attest that my finger sensitivity improved since the early stages of PN. It used to be I could not button things or even determine what I was touching. Now I can, although with difficulty. However, the bad side is the annoying feelings (tinglings) has gotten much worse since the early times. It started out that I didnt need any meds for tolerating the tinglings, but I slowly needed more and more just to stay sane. I am afraid after 1.5 years since end of chemo, I am still requiring higher doses to cope. It has plateaued somewhat but it has definitely not improved.
I hope you are part of the majority (99%) of people whose PN goes away or at least becomes much less bothersome after 1 year. I am in the unlucky 1%. Best of luck to you. -alan.