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• Living with cancer

• 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

• March 9, 2012 2:23 p.m.

  Thanks for your best Quality Health treatment service. I have so happy to your treatment service. Thanks Tania Tani "Carl Balog"

  - No name given

• March 3, 2012 6:39 p.m.

  I also found an article from the NCI Cancer Bulletin which discusses supplements that have shown effectiveness at reducing chemo induced neuropathy. Please check out this article. http://www.cancer.gov/aboutnci/ncicancerbulletin/archive/2010/022310/page6

  - Margaret

• March 3, 2012 6:30 p.m.

  Recently diagnosed with stage 4 colon cancer mets to liver (two spots) and I am completely asymptomatic--so this is really surreal. I feel well enough to research help and prepare for the neuropathy expected from my chemo. Please read this article linked below and comment about the prevalence of using the supplements discussed to protect the nerves and heart muscle from the chemo. http://www.intjnm.org/admin/article/Sara_Love,_Ken_Weizer.pdf

  - Margaret

• February 13, 2012 11:48 p.m.

  I was diagnosed with colorectal cancer 01/10 went through 6 weeks of radiation and chemo, then the tumor and female organs were surgically removed in 05/10. I then had 6 months of chemo and had a small amount of PN during chemo. However 3 weeks after finishing my chemo the PN exploded. In 12/10 I broke my hip when I got out of bed and fell. Spent Christmas and New Years in the hospital. I broke my ankle in 03/11 when I got off a step stool and could not feel my feet. It has taken me a year to get my strength back since the PN was so dehabilitating. I tried to go back to work but have trouble with my hands and feet so have had to retire. It is so hard to explain your symptoms to others who have never had this because it just is so bizarre. My hands and feet are numb and tingle however they also hurt. I am constantly cold and always have a blanket. I have taken Gabepentin and Lyrica but neither really help and make me so tired. I do exercise daily, am alive, and have a wonderful family. I just wish I could enjoy life a little more and live without the pain.

  - Kam

• February 13, 2012 9:47 p.m.

  Sorry, blog wasn't able to finish. Is the transplant gonna bring more neuropathy or will I get mouth sores that cause me to be unsable to even swallow or should I be waiting to see if the cancer comes back cuz right now I'm in remission. Not one bad cell in my bone marrow biopsy, my CT scan is clean, my PET scan shows no hot spots, my bone scan shows no new damage since Septembers scan and even shows some new improvement. Blood tests on kidneys, liver, white blood cells, platelets all normal. But my doctor tells me that if iI don't do the transplant the cancer will be back within a year or sooner. Plus he says it could come back in my spine and I may not even know it and then I bend just right to cause damage to my spinal cord and leave me a paraplegic. So now I'm feeling scared, confused, overwhelmed and unsure. But, the thing I hold onto is my faith in God. He is always there and never leaves. Anyone that feels like life is worse now than dying, please remember that your time here is valuable even if you don't see how. Also, if anyone can give me advice or tell me what to expect with the transplant, please blog back.Thanks:)

  - Amey

• February 13, 2012 9:31 p.m.

  Wow, after reading all the blogs I realize I'm not alone but also see that it's not acceptable for us to just be happy " living " with the neuropathy! I'm 38 yrs old and was diagnosed March 2010 with plasma cyetoma which is a single mass in my chest wall that began destroying my 3rd & 4 th ribs. Immediately started radiation therapy that destroyed the tumor & put me in remission. In about one year, I started having tons of lower back pain and all thru my hips. It got to severe to live with even taking morphine meds, so I went to ER. I was admitted with reports of new lesions in my lower spine and fracture that went across my whole pelvis caused by lesions on both sides of my hips. I went thru radiation therapy to lessen the lesions to get some pain relief before they started chemo ( velcaid/dex/Revlamid ). I started my first round of chemo on Oct. 3rd,2011. My body reacted quickly to the chemo and by the third round I was at normal levels. After chemo, i started symptoms of neuropathy. My feet hurt to even stand on and extreme pain while in bed, while my hands go numby and ache. Hard to even close my hand and I have leg muscle pain also. Pain 24/7, and my little girl suffers also cuz mommy can't take care of her like I should. Heartbreak for me!.I met with my specialist for multiple myeloma and he told me that he wanted me to do stem cell transplant with my own stem cells. So this is where I'm at, one day away from transplant confused and scared. Is the pa

  - Amey

• February 4, 2012 11:17 p.m.

  Emollients such as Aveeno®, Lubriderm®, Udder Cream®, and Bag Balm® provide excellent moisturizing to your hands and feet. Pain relief: Over the counter pain relievers such as acetaminophen (Tylenol®) may be helpful to relieve discomfort associated with hand-foot syndrome. Check with your doctor. Vitamins: Taking Vitamin B6 (pyridoxine) may be beneficial to preventing and treating Plantar-Palmar Erythrodysesthesia, and should be discussed with your doctor. Drugs/treatment changes that may be prescribed by your doctor: Chemotherapy treatments may need to be interrupted or the dose adjusted to prevent worsening of hand-foot syndrome. When to call your doctor or health care professional: If you notice that your palms or soles become red or tender. This most often occurs before any peeling, and recommendations for relief of discomfort can be given. If you are on chemotherapy pills, you may be asked to hold treatment, or need your dose adjusted to prevent worsening of symptoms. _ _ _ _ _ _ _ _ For me , this article was an eye-opener. My PN was a SYMPTOM of an entirely different side-effect with a totally opposite treatment I still have burning,"hot needle"stabbing type pain, my feet still hate shoes(but athletic shoes support & prevent "slip & slide"movement irritation),socks need to wick moisture away from skin. Moisturizing needs to be lightly applied(NOT massaged)LOTION(not cream,oint.or butters)& fregrance free.HTH

  - Marilyn

• February 4, 2012 10:44 p.m.

  This involves modifying some of your normal daily activities to reduce friction and heat exposure to your hands and feet for a period of time following treatment (approximately one week after IV medication, much as possible during the time you are taking oral (by mouth) medication such as capcitabine). Avoid long exposure of hands and feet to hot water such as washing dishes, long showers, or tub baths. Short showers in tepid water will reduce exposure of the soles of your feet to the drug. Dishwashing gloves should not be worn, as the rubber will hold heat against your palms. Avoid increased pressure on the soles of the feet or palms of hands. No jogging, aerobics, power walking, jumping - avoid long days of walking. You should also avoid using garden tools, household tools such as screwdrivers, and other tasks where you are squeezing your hand on a hard surface. Using knives to chop food may also cause excessive pressure and friction on your palms. Cooling procedures: Cold may provide temporary relief for pain and tenderness caused by hand-foot syndrome. Placing the palms or bottoms of your feet on an ice pack or a bag of frozen peas may be very comforting. Alternate on and off for 15-20 minutes at a time. Lotions: Rubbing lotion on your palms and soles should be avoided during the same period, although keeping these areas moist is very important between treatments. CONT

  - Marilyn

• February 4, 2012 10:40 p.m.

  Hand-Foot Syndrome Other terms: Palmar-Plantar Erythrodysesthesia; PPE What is hand-foot syndrome? Also called hand-foot syndrome or hand-to-foot syndrome, Palmar-Plantar Erythrodysesthesia is a side effect, which can occur with several types of chemotherapy or biologic therapy drugs used to treat cancer. For example, Capecitabine (Xeloda®), 5-Flurouracil (5FU), continuous-infusion doxorubicin, doxorubicin liposomal (Doxil®), and high-dose Interleukin-2 can cause this skin reaction for some patients. Following administration of chemotherapy, small amounts of drug leak out of very small blood vessels called capillaries in the palms of the hands and soles of the feet. Exposure of your hands and feet to heat as well as friction on your palms and soles increases the amount of drug in the capillaries and increases the amount of drug leakage. This leakage of drug results in redness, tenderness, and possibly peeling of the palms and soles. The redness, also known as palmar-plantar erythema, looks like sunburn. The areas affected can become dry and peel, with numbness or tingling developing. Hand-foot syndrome can be uncomfortable and can interfere with your ability to carry out normal activities. Prevention: Prevention is very important in trying to reduce the development of hand-foot syndrome. Actions taken to prevent hand-foot syndrome will help reduce the severity of symptoms should they develop. CONT.

  - Marilyn

• February 4, 2012 10:35 p.m.

  I have been following this blog for sometime looking for some new solutions to what was becoming a chronic PN problem for me. In 2003 I was dx. with kidney cancer had a rad nephrectomy(included removal of Adrenal gland and all area lymph nodes)with follow-up radiation treat.x25. Mets to the chest wall were dx. 2010 & following surgery I was started on oral chemo (agent Sutent). I was given a 85 pg document regarding my drug (and as a nurse I read every word...including 2 full pages of side-effects). We who have chem related PH the problem is drug leakage into nerve beds...we don't want MORE circulation (unlike PH secondary to diabetes which is caused by decreased oxygen to the nerves from blocked capillaries). So, I expected some PH & I began the treatment I used for my diabetics but limited the degree of massage. My PN began the middle of my 1st cycle and unhappily, has been present for 3-4 wks.out of 6 for 18 cycles. My tumors have been shrinking with each 3 mo CT & there have been no new sites...so the drug is doing its' job. But the PH despite my best TLC rages on screaming... so back to my nursing drawing board & my 2 pg. list of side effects of Sutent...& I found a called PPE on Chemo.com I found the following info: CONT IN NEXT RESPONCE, DUE TO LENGTH.

  - Marilyn

• January 3, 2012 1:43 p.m.

  I have had four of six chemo cycles with one tomorrow and the final one in three weeks. The list of possible neurological symptoms covers my situation well. As someone mentioned, no one discussed these symptoms with me until I brought them tomy Oncologists attention. She responded, "that can happen" A bit late if they don't go away. I have stage IV ovarian cancer, which has been surgically removed. Now at 82 years I'm wondering if I want to finish this cycle.

  - Penny

• November 3, 2011 10:19 a.m.

  Question to Dolf: if nerve entrapment is found, can this be treated? I developed CIPN while getting Taxol treatment for breast cancer. I finished the chemo in August 2009. The neuropathy in my feet has gotten gradually worse over the past 2+ years. For the past 2 years I am on a combination of Venlafaxine, Tramadol & Gabapentine. The doctors have tried a nerve blockade, which only helped for 2 weeks and I have also received insoles (they help). With the help of the pain relievers I can still walk no longer than 10 Min. I am only able to work about 25%, because the medications make me dizzy and tired all the time, which has caused us much stress financialy. With 2 small children on my hand I can get quite desperate by the idea that I can not walk anymore.

  - Nelia

• October 31, 2011 9:22 a.m.

  As an orthopaedic hand surgery specialist I have been evaluating and treating people with nerve entrapment for 25 years. Many of you with neuropathy symptoms after chemo have preexisting nerve nerve entrapment. This is much akin to adjusting to a healing abrasion and then bumping it on something only to see stars. Though you may not have perceived a symptom pre chemo, thee added chemical insult to the nerves may bring the symptom to the surface. It's not uncommon for a person with non-chemo nerve entrapment to have the problem in two and sometimes all four extremities. The way to determine if you have nerve entrapment causing or contributing to your symptoms is to undergo a thorough nerve conduction study (NCS) and sometimes an EMG. Demand one--and don't settle for an NC-stat that would probably not be useful.

  - Dolf

• October 25, 2011 11:56 a.m.

  As I finished reading the experiences of the posters here regaring their issues with pn after chemo. I could almost replace their name with mine and not even write a comment. I am in remission from Multiple Myeloma and I have been on maitenance for the past 15 months after a successful auto stem cell transplant. I've been on Revlimid for the entire post transplant time. I keep asking my doctor about when I can stop the Revlimid because it's ruining everything about being in remission. There is no quality of life and I must wonder about chemo. Is the treatment worth the pain you go threw later or possibly for the rest of your life. Everthing I ever enjoyed in life is gone. I fall down, burn myself unintentionaly, can't feel my feet and some of my hands. It seems that my doctor and many other doctors it sounds like are tuned out to the pn problem. I read about class action suits and I feel it may be time to get the Lawyers in the loop. Reading about people thinking about suicide should be enough for someone to realize that this problem is serious. Something MUST be done. These chemo drugs are ruining any hope for a normal life after remission or even a cure. And why don't insurance companies cover accu puncture if it is proven to help. What do they cover that has prove to be a help ...NOTHING This is a serious problem and it's really time for it to be seriously taken. PN is a terrible thing and I'm sure many people have committed suicide that we haven't even heard about. HELP!

  - JOHN

• October 23, 2011 6:51 a.m.

  I was operated for colon cancer 10/04/10. Scheduled for 12 treatments over 6 months. Oxyplatin and 2 others. They stopped treatments after 10 of 12 completed. Neuropathy continues. In the beginning I had trouble holding a cup. If I did not concentrate it would slip out of my hand. To this date can not button my shirt. Was told it would be 1-3 years before the neuropathy stops. Though I have adjusted some it still is a constant in my life. Feel like I have heavy shoes on. Always double check before stepping into a shower or climbing into bed. Just to be sure not wearing socks. Not once was this so. Climbing steps that are crowded I make sure I have a grip on the rail. Balance is a problem. Have been taking vitamin B6 but don't feel that has done anything for me. Had none of the other pre existing symtoms noted that can cause this.

  - Tom

• October 9, 2011 3:13 a.m.

  My wife finished chemo in July 2011 and experienced the hands and feet neuropathy, but it is not this that has been the problem even though it continues to be at this time. But, she has experienced pain in her knees, thighs, hips and lower back which she did not have prior to chemo and radiation. She has just finished radiation 2 weeks ago. This is all from breast cancer. She just started harmone therapy yesterday which is to continue for the next 5 years. I would like to know about treating the pain she has it keeps her up most nights and me too. She has continued to work since the surgery back in March and working keeps her mind occupied which helps but her days off are rough to say the least. What can be done about the pain? Pain meds don't seem to have any affect, chiropactic seems to help but only for a short while. Warm baths help but only for an hour or two. Heat pads help but not for a good night sleep. Not getting good sleep doesn't help. Can anyone give me some suggestions?

  - Ron

• September 10, 2011 3:21 a.m.

  Yes it's me again.The same one that had the tumor on my hip.I ran out of space to wright LOL.You will have to excuse my spelling I can't seem to remember anything any more and there's no spell check.I'm just like the rest of you thankful to be alive.I'm 51 years old and loving every minute GOD has given me.So the pain and all the other side effects from chemo was well worth it.I was depressed about not being able to have a normal life until I see my children graduate and make me a grandpa.So glad I can comunicate with people who understand what were all going through.Keep up the fight and GOD bless all of you.Remember prayer does work.

  - Tom

• September 10, 2011 2:59 a.m.

  Hello everyone this is my first time here.It was very comforting to know I'm not alone living with pain after chemo. I supose I'll start out with the cancer I had.In december of 2007 I was diagnosed with non hodgkins lymphoma stage 4.I had a large tumor that went all the way across my hip bone.It actually ate the top 2 inches or so of my hip.The cancer was all through me.I spent altogether over three months in the hospital.Every three weeks I went in for 5 days of chemo.I was getting such high doses I had to be watched in a hospital.That was the only way to save my life.At first they sent me home for christmas and told my wife that I wasn't going to live.So the doctors said at least I might make it to dec 25 before I died.I went back to the hospital jan 2 and thay couldn't believe I was still alive.But those were the worst painful and terrible days I'll ever go through.I started chemo right then.The cancer had spread all through me.I even had to get chemo injections in my spine fluid.After 6 monthes I had a autologous stem cell transplant.They gave me massive doses of chemo.All my blood counts were zero.I had to stay in a germ free sterile room for 3 and a half weeks.Anyway I have severe pain in my feet.It feels like I walk on hot gravel.Without pain medication I wouldn't be able to walk.I feel your pain everyone.don't let it beat you.The worst part about all this is liveing with the 50% percent chance that the cancer might return.GOD is in my life now.HE is my comfort.

  - Tom

• September 4, 2011 1:59 p.m.

  My husband finds that wearing socks to bed at night helps the P.N. in his feet. Hope this info is useful to someone out there who is suffering these side effects.

  - Alayne