Cancer

Free

E-newsletter

Subscribe to Housecall

Our weekly general interest
e-newsletter keeps you up to date on a wide variety of health topics.

• May 20, 2013 12:40 p.m.

  Obviously I came on here because I too suffer from CIPN, but now I thank God that I researched it before it got bad. The Mayo clinic had really good success with a simple amino acid supplement called L-Carnitine. I started taking it 1000mg x 3 per day every day since the moment I first experienced neuropathy. If I miss a day, I know it and the tingling and numbness come back to remind me. I do have a LOT of foot pain, but am EXTREMELY active, a Realtor,a dancer. I came on here looking for help for what seems like major pain to me, but after reading what others wrote, I realize I was sent here to help. This supplement is cheap, effective and has kept me going as much as possible. I had Stage 3B Breast Cancer and had dose dense A/C followed by 8 rounds of Taxol. Neuropathy set in the first day. L-carnitine has saved me. Inexpensive as hell... Puritans Pride website has it for as low as $4 a bottle. Everyone try it. And I am so sorry to even be complaining when I am obviouly so blessed. Prayers for every one of you. By the way I completed treatment one year ago today.

  - Annie

• May 18, 2013 6:17 a.m.

  In 2008 I was doing chemo..Cisplatin. During that time I started having tingling in hands and feet, Almost 5 years later it has gotten worse

  - Linda

• May 8, 2013 9:53 a.m.

  This is for Scott and others who have balance problems.... Even though some nerves have been damaged, you still need your feet and leg muscles working for you and not against you. Balance exercises are going to strengthen the muscles in your toes, ankles,and legs and also improve your sense of where you are in space. Some pain in calves and feet can also be from tight leg muscles....doing the right stretches can help a lot. Talk to your doctor about going to physical therapy so you can learn the right exercises. Any action you take to help yourself-- it doesn't matter how small-is going to make you feel more in control of your life.

  - Tassy

• April 30, 2013 5:07 p.m.

  Thank you everyone for your relevant stories. Non-hodgkins in 2004. Treated 11 months chemo and radiation. Neuropathic pain started during chemo. Cancer returned in 2011. Stem cell transplant with radiation. Pain has increased. Most doctors said it is something I need to live with. I truly am grateful to be alive and remission. I am currently on 1800 milligrams of neurontin and some anti-depressants. Have had several electronic tests and lumbar procedures. Trying to eat regularly, with some excercise. Anyone have any ideas to combat this nueropathy? Thank you

  - Scott

• April 27, 2013 10:17 p.m.

  I had a tandem BMTs in November '99 % feb. '00. The run-up involved a seven month run-up to the transplants. I had seven VAD packs, with the V being vincristine. Since the D dex basically eliminated by immune system, I developed cytomegivorus CMV, Pneumocystis Carnelli, and Herpes Zoster pnemonias simultaneously. I could go on, but I am alive, not a bad side effect. My PN developed during the run-up treatments. It has progressively gotten worse. I have worked up to the max dosage or Nuerontin. Just recently added , lidocaine patches nightly for sleeop purposes. It is a killer on balance and with no feeling I find blood trails constantly. Mild inconviience, considering I am a live ten years past projection.

  - Tim

• April 18, 2013 6:45 p.m.

  Since I'd been an exercise teacher for years, I knew I had to regain muscle strength in my toes, feet, ankles and legs when I ended up with neuropathy after chemo. Because my toes didn't know where they were at times, I fell and sometimes bounced off the walls when I walked. Doing balance exercises strengthen my toes and other muscles in spite of neuropathy. I am no longer at the scary risk of falling. Talk to your doctor about getting a referral to physical therapy. Balance exercises are easy to do at home.

  - Tassy

• April 17, 2013 10:46 a.m.

  I am 59 year old woman. I was treated for breast cancer seven years ago. At the time of my treatment I was in a great deal of pain, and every time I mentioned this to my oncologist, he simply said, this is nothing to do with breast cancer. I was given 4 AC 1 taxol 2 taxoteare. I responded well to the chemo. I have endured much pain since and have tried to be patient and giving myself time to recover. However, seven years on my pain is more constant and pain killers do not help much. I find this condition very depressing as I can't see the end of it. I have now practically been house bound over six weeks, as I do not have the confidence to go out alone, when I am in so much pain and it greatly effects my concentration/balance etc. I was widowed two years prior to my diagnose. I am now very angry, why ,here at the Royal Marsden hospital in England, I was never told about the nasty side effect....where is my quality of life...???

  - Dushka

• April 9, 2013 7:17 p.m.

  I had R-EPOCH for diffuse large B cell lymphoma and received Vincristine with treatment. After the fifth session Vincristine was stopped with rapidly advancing CIPN. After five months from chemo the CIPN is almost the same intensity and my blood counts are back to normal. Taking vitamin B+ with little results. My GP says there is no cure and I must learn to live with it. Take extra precaution to protect hands and feet. Am thinking about trying acupuncture. People say I look great after chemo. It is pointless to explain it to them so I just say thanks. Cancer changes your life but I am thankful for every blessing.

  - John

• April 6, 2013 9:20 p.m.

  Has anyone else experienced the beginning of chemo-induced neuropathy a year or two or longer AFTER chemo? I had Fludarabine / cyclophosphamide / Rituxan for chronic lymphocytic leukemia in 2010 and had (maybe) the tiniest loss of feeling in toes thereafter, but now---in early 2013---it seems to be rapidly increasing. Not at all sure it is from chemo, but maybe?

  - Alan

• February 14, 2013 5:25 p.m.

  My neuropathy has been very painful in both my hands and feet. In fact my legs are numb up to my hips and the cold is a major factor in the pain level. I am spending the winter in the southwest where the temp is always above 50 degrees. This makes a difference I don't feel the absolute freezing in my hands and feet. I have found walking 3 times a day and swimming helps with the neuropathy and also with movement. I still take gabepentin 3 times a day but am able to move around better. I really think the swimming has made a difference. Maybe what I am doing will help someone.

  - kam

• January 20, 2013 5:32 p.m.

  I was diagnosed with colon rectal stage 3 end of march 2012. Since colon resection month off 28 rad treatments with 3 xeloda pills twice a day 1 month off then chemo really started. I started getting pn around 10th session. Now it seams to be going up my legs, feet & hands covered 24/7. I just started taking gabapentin 1 mth. Ago no relief . I didn't realize it was so aggravating as the nurses or onc. Never told me much about it. Hoping it don't get much as I have already fallen for no reason. My feet feel like they are wrapped with a scotch brite scouring pad. Will keep reading blog. Peace out.

  - DJ

• November 20, 2012 9:05 a.m.

  I have CIPN in feet, legs and hands caused by Vincristine as a part of E-POCH chemotherapy for Stage 1 diffuse large B-cell lymphoma. It was mild after four treatments but after the fifth treatment it started becoming more severe. I let the doctor know and the Vincristine will be discontinued in the final round six of chemo therapy as they said it would take a long time to recover from CIPN if at all. It is difficult to walk and put on clothes. Hoping for better days after chemo but am realistic about the prospects.

  - John

• November 15, 2012 12:52 a.m.

  Please do not interpret my comments here as recommendations. They are only a description of what happened with me. If you have similar experiences, please don't do what I did without talking to your doctor. I'm a 67-yr old woman, 3 months post the R Chop regime (8 cycles) for DLBLC non-Hodgkin's Lymphoma and have now had two negative PET scans. (Hurrah!!) The most distressing -- due to pain -- side effect that I had was peripheral neuropahthy (PN) in my toes/feet/ankles and hands/wrists. I was taking up to 6 tablets a day of 10/325 Percocet to keep the pain level at around 5 (on the 1 - 10 pain scale, not taking any until my level was at 7). This problem began after my third cycle and continued, despite decreased and omitted doses of Vincristine, until about two months after I finished them. The only routine prescription medication I was on was throughout chemo was simvastatin 20mg daily. I went online and read a lot about (PN) and decided to take more B-vitamins and add benfotiamine. This helped, and Percocet use went down to 2-3/day. After I finished chemo, I started having quite a lot of pain in the muscles of my upper arms. Knowing that statins can cause muscle pain, and since my PCM left staying on it after chemo up to me, I decided to try stopping it for a while. Within four days, the pain in my arms was gone. And the PN was down to a level of 3 or less except for some nights. No more Percocet. Check with your PCM if you have PN and are on a statin.

  - Marcie

• October 19, 2012 2:09 p.m.

  It's been over a year since my last chemo session and I still have neuropathy in my feet. It's particularly painfull at night. I've taken the B-6 route, but that didn't help. My doctor prescribed me 1200mg of Gabapentin daily. It helps with the pain a great deal, but doesn't eliminate the numbness. At least I can sleep at night without the joints and muscles in my feet hurting so much.

  - Carol

• October 17, 2012 9:11 p.m.

  I have severe sensory neuropathy body wide and I'm 4 years after treatment from breast cancer. We know it's a taxol induced condition. I have all the drugs given for this and an excellant rheumotolgist, md/phd, guides me. steroids give me good results but it's time to start reducing thos. I'm now ready to get a second opinion on the latest and Mayo seems to be the most balanced clinic and of course is highly regarded. I'd like to hear of any doctors and/or centers worthy of travel from the West Coast. Thank you.

  - Tracy

• October 9, 2012 12:21 p.m.

  is it possible for a caregiver to develop Chemotherapy Induced Peripheral Neuropathy?

  - Sue

• October 4, 2012 6:48 p.m.

  Hello my friends. its taken me some time to get off my behind and find someone to write in regards to my issues as no one has ever understood; at least until i started reading here. I received chemo for colon cancer in 2007. 1 month after i completed the treatments my neuropathy showed up and kept getting progressively worse until approximately 6 months later, when it leveled off. not good but not getting worse any longer. i take at least 120mg of oxycontin every 6hrs or so. which is not quite enough for the pain but since i have such a hi tolerance my doctor wont give me any more. because of my colon issues i no longer absorb vitamins and minerals as a normal person. this includes opiates. i also have discovered, through my own observations and pain, that i no longer retain sodium. so unless i drink an energy drink containing at least 8% of my daily allowance for sodium, i go into extreme cramps and spasms. emergency room worthy 5 times. i keep this at bay with a daily bottle of gatoraide. i appreciate the other messages here. they have helped me.

  - Michael

• August 26, 2012 9:28 a.m.

  I finished chemotherapy for breast cancer is May of 2011. Ever since I have had problems with light-headedness and a tingling in my hands as if they have fallen alseep. Recently I read about peripheral neuropathy. Could I develop this after the termination of chemo? After I read all the possibilities, I realized I have also been falling more - losing my balance, but I am 65-years-old. My oncology docs are in Atlanta, I spend the summers in Minnesota. Do you think I,indeed, have pheripheral neuropathy? My dizziness sometimes interfers with my feeling of safey for driving. None of the website mention dizziness.

  - Diana

• August 9, 2012 3:01 a.m.

  5 years ago i had a lot of Chemo to treat Ovarian Cancer,and my whole right arm and hand ended up with a lot of Neuropathy that i still have to manage.The nurses said that there is a lot of inflammation going on so i started to research that,and have been relying on 10ml of regular Melrose fish oil every day the last 4 years to keep the inflammation down.Melrose advice 10ml to treat inflammation.I find that i am OK as long as i do it every day.If i skip it for about one week,it takes about 4 days to start working again after i start back on the oil again.I also eat a very healthy diet rich in anti inflammatory foods like Tumeric,garlic,ginger etc.After cancer i now live a life with no stress,get plenty of sleep,and put my good health first on the list every day.The Neuropathy only gives me a problem if i do a serious lot of hard work holding onto tools.I would not live this good life without my daily dose of lemon and lime flavoured fish oil.

  - Vivi

• May 13, 2012 10:48 a.m.

  I suffered a compression injury to my left knee when a truck backed into the door of my vehicle while I was standing on the ground facing into the vehicle. The immediate efects were dramatic with extreme pain from the knee to the foot which fortunately abated fairly quickly. A trip to the ER and X ray re3vealed nothing broked. A next day visit to my family MD resulted in the discussion of post traumatic neuropathy which he thought could last for some time. Since the immediate pain subsided I have had continuous burning from the back of my left knee to my left heel and burning /tingling (foot falling asleep)from the left heel along the outside o the left foot to the baby toe. I have had an MRI, and nerve study which revealed nothing significant (the good news) the bad news is that if anything the burning tingling pain is getting worse particularly when I am attempting to sleep at night. Any ideas as to these symptoms persisting/worsening despit the MRI and nerve testing revealing no underlying pathology? Thanks!

  - Rich

• May 10, 2012 12:36 p.m.

  I HAVE BEEN DEALING WITH THIS FOR 6 YEARS. NO END IN SITE. WAS TOLD THAT ONE DAY I WOULD NOT BE ABLE TO WALK. CAN'T FIND NO MEDICINE THAT HELPS. CAN'T WALK,TEMP. IS HOT THEN COLD. BACK HURTS SO BAD THAT I CRY. BATHROOM MODES WELL THAT ANOTHER STORY. IF YOU HAVE IT YOU HAVE IT. SORRY NO CURE WAS WHAT I WAS TOLD. I WOULD LOVE TO FIND HELP

  - ANTHONY

• April 26, 2012 9:12 p.m.

  I am sorry to read about the cancers that you younger people have.I had chemo which I regret taking, the neuropathic symptoms have affected all my nervous systems causing seizures,joint pains for every joint in my body. I am trying thai Chi for seniors, which seems to help because the chinese adage is any exercise which is done, eg.boot camp training that causes pain, means no brain, because your body is telling you I am hurting, so stop.I am looking into metabolic dieting, which is based on the fact that each person's body is different, and there is no one diet that fits all.

  - Bob

• April 2, 2012 3:46 a.m.

  I was treated for AML in 2010-2011. I have neuropathy in both feet, both legs & my right upper arm. It has been a year & 5 months since my last chemo & I have no change in the level or degree of neuropathy. I would imagine after this long it must be perminate. I never got taste back either.

  - Brian

• March 29, 2012 1:55 p.m.

  I have been suffering with neuropathy for 4 months since chemo stopped and have tried Lyrica without success. There does not appear to be any successful treatments for this disease based on 2012 advice I have received from Toronto oncologists. The colon cancer appears to have destroyed and at least this is the worst of the two evils.

  - Ed

• March 15, 2012 8:19 p.m.

  I was a step aerobics instructor before I got this dreaded disease. I am hoping that it won't last long and I will be able to teach again. My doc said it might get better in a couple of months. It is pretty severe. Does anyone know of others who did recover from this? I am in my early forties. This just can't last forever. Too painful. Is there hope?

  - Tammy