Continued problems from chemo 7 1/2 yrs after completion

[dianetavegia]

FOLFOX really messed up my nose and left it looking like 'ground meat', according to my doctor. I also have 'enlarged turbinates' since the end of FOLFOX in Aug. 2009. Even the slightest congestion will cause me to wake at night feeling like someone is holding their hand over my nose. That's only happened maybe 10 times total but leaning back in a dentist chair or at the beauticians will cause some obstruction as if my nose is completely closed. I've never heard this mentioned by any others who've had chemo.

Secondly, my neuropathy in my hands is now just in my fingers, but the neuropathy in my feet moved over the years up my legs and now stops right at my 'butt cheeks'. I have tactile or mechanical allodynia. Something can gently rub across my legs, especially pj's at night, and it's very uncomfortable like rubbing a sunburn. I'm not bothered by it if someone were to grab or slap at my legs, yoga pants at the gym ( 3 classes 2 hours each weekly). It concerns me because it has moved slowly over 7 years and I wonder if it will continue up my back and into my arms, etc. Onc wants me to take Lyrica but I refused. Oh! My fingerprints are back but are still very faint.

Has anyone else had neuropathy continue to spread this many years out? Brooks had told me he has allodynia but he uses meds to control the discomfort. He said the ceiling fan caused him terrible skin pain.

Thanks for reading. I did find a study that showed FOLFOX was the cause of tactile (or also called mechanical) allodynia.

Anyone else have nasal, mouth, throat problems that remained after FOLFOX?

[Marylandmaniac]

Wow sorry to hear this. Did you have 12 full rounds with the OX part? I have had 7 rounds so far and I am getting the neuropathy now. Fingertips are slightly numb and sometimes my hands just feel stiff. My feet feel slightly numb and sometimes my legs will ache a little. That seems to pass once I start moving around. I am going to talk to my Onc next week about it. Need to figure out if it is better to tough it out or if we should think about scaling back or getting rid of the OX part. Just don't know the right choice.

[cmrl]

My neuropathy slightly improved a few months after ending folfox, but I noticed it began to get worse again this Summer. I think it may coincide with my starting Norvasc, for high bp, since neuropathy is one of the possible side effects. There are many drugs that cause neuropathy, including cholesterol medication. I don't think most MD take this into consideration when prescribing. I don't have the allodynia.
As far as the nose problems, I am a mess, but it's hard to quantify if this was exacerbated by chemo, since I always had problems.
Good luck getting some answers, and congratulations on being NED.

[fumaros]

Sorry about your side effect struggle. I have quiet a bit of stinging and numbness in my feet. Whenever I am stressed now, my palms go numb and tingly especially in the nail beds. I used to have these shocks that traveled from my butt to my feet whenever i drove or got excited, but that has resolved a bit recently.

[Ron50]

Hi Di,
Sunday is my anniversary. It is the end of year 19 of survival , start of year 20. I never had any of the oxy drugs just 5fu and levamisole. Levamisole was banned a few years after I was on it for often fatal side effects. My neuropathy started around 5 years after chemo ended. Both feet , legs and left hand are involved. I was sent to a neurologist. He dxed me with moderate to severe motor sensori peripheral neuropathy. He could not tell me what caused it and would not treat it. I have tried Neurontin ,endep , lyrica ,norspan and fentanyl patches. Nothing helped. They put me on targin (oxycodone and naloxone) for two years I finished up on 80/20 mg a day and my pain was getting worse. I took myself off it after a 34 week taper. my sinuses are wrecked . I use nasonex spray morning and night and phenerghan 25 anti-histamines twice a day. I am on cpap for the rest of my days and without the sinus drugs I would not make it thru the night. Chemo has caused a raft of auto immune problems. I have nephrotic syndrome of the kidneys , currently at stage2-3 kidney failure. I was losing over seven grams of protein a day thru my kidneys. I take cyclosporine twice a day to keep it between one and two grams. My kidney complaint was originally thought to be minimal change disease. The treatment for that was 75mg of prednisone daily for 18 mos , two years with taper. The pred did not help it put me into type two diabetes and very nearly adrenal insufficiency. The pred also removed a lot of calcium and put me at osteo-penia. I have had three kidney biopsies and none of the results relate to any known kidney disease. It has been dxed as auto immune nephrotic syndrome , cause unknown. I suffered acute pancreatitis and lost my gall bladder leaving me with chronic bile salt malabsorption. I have auto immune hepatitis from my medications. Prednisone clears it up but puts my blood sugars thru the roof. Last but not least I have congestive heart failure causing peripheral and pulmonary oedema and up to 13000 premature ventricular and atrial ectopic heart beats a day. I have to weigh myself every couple of days and if my weight goes up I have to restrict my fluid intake to 1 litre a day and take diuretics twice a day. Cause unknown ,possibly 5fu cardio toxcicity. I laughed at my surgeon when he said I was cured of cancer shame about the rest. Hugs Ron.

[Maelleous]

I most likely had cardio toxicity that almost killed me from Folfox, at least that is what the doctors think. I am seeing a Cardio-Oncologist on Monday to find out. I have been doing a ton of research and after surgery, the odds of 5 year reoccurrence/survival is not a huge difference with or without chemo. I only made it through three rounds and not sure chemo is worth it in cases where you have severe side effects. Most of the studies I have found showed a 6% increase in the best case scenarios.... not sure that is worth the side effects etc. Granted every case is different and I would still recommend people do it if they can tolerate it, but there are some serious side effects to consider.

[Lee]

I have not noticed any issues with my nose, mouth, etc, butt I do have my own set of issues.

We know I am heading to be come a diabetic someday. Suspect it is probably due all I've been through. Guess steroids can cause it. Had lots of it while on chemo. I watch what I eat, butt it does not really help. Every year my numbers creep up one or two points.

I'm 12+ years out from surgery and I've noticed this past winter my tail bone aches at times. I suspect I'm getting arthritis there . Off all the places for that to happen.

I've been a walker for the past 11 years. I do believe this has helped me a lot over the year. Believe it has kept a lot of issues at bay. I suspect the day I stop walking, I will probably soon be in a wheelchair.

One day at a time,

Lee

[dianetavegia]

I did have all 12 tx of FOLFOX and after the end, I mentioned to my onc about my sonic boom sensation that I felt when bending my head forward. He said that's L'Hermitte's Sign (syndrome) and that if I'd told him during tx that he would have stopped FOLFOX. He also said if I ever took FOLFOX again, 'I'd be putting you in a wheel chair for the rest of your life'. I didn't have any chemo after my liver resection which will be 5 years this coming April 11th.

I guess keeping active is the best thing we can do. They cancelled the one early gym class so I'm doing 6 hours of cardio/ circuit training a week. I'd gained weight during chemo and never lost it but am now down over 17 lbs. I'm back to my pre chemo weight and want to lose about 10 more lbs which would put me at my age 44 weight and I'm now 66.

We find out either tomorrow or Friday if my husband has subungual melanoma that our dermatologist has 'pfffff'd' for over 2 years. It's hard to eat when I'm so worried about him but that's not the way I want to lose weight.

Diane

[dianetavegia]

Ron,

my sinuses are wrecked . I use nasonex spray morning and night and phenerghan 25 anti-histamines twice a day. I am on cpap for the rest of my days and without the sinus drugs I would not make it thru the night.

Thanks for this. I'm sleeping on my side or abdomen to keep the back of my throat open. BCBS refused a sleep study and only offered a pulse ox on my finger to be used at home for one night. Since my episodes are not nightly, what a waste, so no Cpap for me. The doctor cancelled my follow up appt. as soon as he found out he wasn't getting $3,000 for me to sleep in a bed at his facility.

Sudaphed will help keep me open if I take it once a day once I'm cleared up, but the doctor always acts shocked when he looks in my nose. I'm thinking 'do you not remember or look over your notes?' I started back with some petroleum jelly inside my nose like I used during chemo if we have our heat on. It's been a warm winter so far.

Congrats on 19 years! I'm 8 from dx and almost 5 from the liver resection!

Diane

[teri3]

Fingertips are slightly numb and sometimes my hands just feel stiff. My feet feel slightly numb and sometimes my legs will ache a little. That seems to pass once I start moving around. I am going to talk to my Onc next week about it. Need to figure out if it is better to tough it out or if we should think about scaling back or getting rid of the OX part. Just don't know the right choice.

My oncologist stopped my treatment of folfox at 11 out of 12 because I started getting tingling in my fingers. It has since spread to the bottom of my feet and hands but it's livable. My bet is he'll stop the oxi part of your treatment. Make sure you tell him about the numbness. Good luck with your treatments.
HUGS
Teri

[Marylandmaniac]

Fingertips are slightly numb and sometimes my hands just feel stiff. My feet feel slightly numb and sometimes my legs will ache a little. That seems to pass once I start moving around. I am going to talk to my Onc next week about it. Need to figure out if it is better to tough it out or if we should think about scaling back or getting rid of the OX part. Just don't know the right choice.

My oncologist stopped my treatment of folfox at 11 out of 12 because I started getting tingling in my fingers. It has since spread to the bottom of my feet and hands but it's livable. My bet is he'll stop the oxi part of your treatment. Make sure you tell him about the numbness. Good luck with your treatments.
HUGS
Teri

It looks like this round is the last round I will have Oxi. He said 8 rounds is the lion's share and he doesn't want to push it. I am kind of looking forward to that part being gone. I think most of my side effects have been from the Oxi.

[teri3]

Good. I have done better without Oxi this time around. I didn't have a lot of side effects but I wasn't as fatigued and obviously no cold neuropathy. Good luck.
HUGS
Teri
.

[mariane]

Thank you for this thread!

I had felt relatively well until I started Lupron for endometriosis last September. With each monthly injection my joints hurt more. I take Vit D3, Calcium. I maybe have to start Bonviva. Actually I am not sure whether my problems are from Lupron itself or from some post chemo side effects and Lupron together. I exercise but the initial stiffness and joint pain scares me I used to be very flexible. I still walk, do Pilates, try to run. I am still energetic and often forget about pain. When I start moving it is OK so I even keep pace on Zumba class the whole hour but it is different

Additionally I do not see any solution. Gynecologists do not know what to do with me but do not want to remove ovary remnant. Oncologists send me back to gynecologists.... I do not want to be on Lupron forever. Sloan gynecologists did not like any hormones for me even topical but did not agree for ovary removal as well... At this point I do not know what to do...

[ibcaree]

I'm an 8 year survivor and I have experienced Neuropathy moving from my feet up to my calves. Oddly, I don't experience it in my legs all the time. I only notice the neuropathy in my finger tips when it's cold. The main long term side effects I have are brain fog, short term memory issues, neuropathy and all over joint pain and stiffness. I haven't had any issues with my nose and honestly can't remember if I had any while going through treatments.

Mariane - I've had all over joint pain and muscle stiffness ever since I stopped chemo..not saying this is the cause for your issues, but it's a possibility.

[mariane]

I'm an 8 year survivor and I have experienced Neuropathy moving from my feet up to my calves. Oddly, I don't experience it in my legs all the time. I only notice the neuropathy in my finger tips when it's cold. The main long term side effects I have are brain fog, short term memory issues, neuropathy and all over joint pain and stiffness. I haven't had any issues with my nose and honestly can't remember if I had any while going through treatments.

Mariane - I've had all over joint pain and muscle stiffness ever since I stopped chemo..not saying this is the cause for your issues, but it's a possibility.

Ibcaree, thank you so much! Did neuropathy meds help you a bit? I will try to discuss all these symptoms with my oncologist if she would have some time... I have never taken anything for neuropathy. Vit D and Calcium make my joint pain bearable and sometimes I do not even have it. It is stronger during the week after Lupron shot.

I have some problems with short term memory. When I was still on 5FU I was never sure whether I took my Ursodiol or not. Crazy. IT is a bit better now. I am still capable to learn and will be happy if my memory only will not deteriorate. However I have no guarantee...

I try to do something with my chemo damaged teeth. I had my second root canal yesterday and the pain is still unbearable. I will have to see my dentist tomorrow to check the tooth. There is always something going on...