It wasn’t until she was being treated for cancer at age 64, that Karen Langlois of Rhode Island learned she had Charcot-Marie-Tooth. In 2006, Karen received her first chemotherapy treatment at the Dana Farber Cancer Institute in Boston MA. She was given a mixture of four drugs including Vincristine, which is known to cause neuropathy problems. Immediately following treatment, Karen experienced “foot drop,” i.e., trouble keeping the foot level, or toes pointed up, when walking. Foot drop is a classic symptom of CMT. Wisely, Karen reported the problem to the attending nurse, and her doctor eliminated Vincristine from Karen’s protocol. That one exposure, however, jump-started CMT in Karen’s body, leaving her in leg braces for several months.
Over the next few years her cancer spread, and Karen underwent several surgeries and more chemotherapy. All the while, her legs remained very weak. She was widowed in 2010 and credits a great support system of family and friends, “especially my sister Sally,” with helping her cope as well as continue her cancer treatments. Someone was always on hand to travel with her to Boston or take care of her dog.
In November and December 2011, Karen received three doses of chemo, containing Eribulin, which further weakened her legs. Over the short span of just three weeks, Karen went from walking independently to requiring the use of a walker. “I was close to being bedridden,” she revealed.
The CMT diagnosis was not a complete surprise to Karen. As a child she was “always falling, my knees always had scabs on them and I had extremely high arches.” Karen remembered that in 1987 her sister Sally was involved in an accident. Observing Sally’s high arches, the doctor attending her mentioned CMT. “But, since she didn’t have any symptoms, so we kind of blew if off,” explains Karen. “When I started having problems, Sally reminded me of what that doctor had said years ago. I had a feeling my symptoms were the result of chemo, not of the cancer itself. I went online and said ‘This is what I’ve got.’” Sally realized at that point she also had CMT. Her symptoms are still minimal which she attributes to a now sixteen year habit of exercising.
Since December Karen has been receiving both physical and occupational therapy. The Visiting Nurses of Rhode Island go to her house twice a week to work with her on muscle strengthening exercises and help with her activities of daily living. When the weather cooperates a nurse accompanies Karen while she uses a walker around the cul-de-sac outside her home. “On the good side,” she told us, “my brother-in-law is a chef at a restaurant up the road. He’s always bringing me something delicious for dinner!”
Not one to sit idle, Karen found knitting to be good exercise for her hands. “I just use one ball of yarn and when I get to the end, I unravel it and start all over,” she laughed. The knitting and unraveling seem to be working. “Now that my hands are feeling better, I just might knit a sweater or a scarf!” she says.
Karen has set other goals for herself. “By April, I want to be up and out and walking with a cane.” She’s also hoping to return to her office job at Parente’s Oil Service in Coventry, RI. “They have been wonderful to me. I’ve been out all this time and they haven’t replaced me!”
my wife has CMT and was diagnosis with Endometrial Cancer 3 months ago. She had some very minimal balance issues with the CMT, but was able to walk without the use of an aid, Since having 3 Chemo treatments , she needs the use of a walker and is not able to navigate around our home. The Cancer Doctors were aware of her CMT,but seemed to only be concerned about treatment of her Cancer and did not take the time to investigate any interaction with her CMT and Cancer treatment, Her quality of life is now impacted !
I would certainly do things differently, hind sight is always 20-20.
My husband had CMT 1. He was also recently diagnose with a spot of cancer outside his Pancreas that and Dr decided to treat him with a Chemotherapy pill called Lenvima (Lenvatinib). We knew to expect side effects, However we did not expect what happened. In just a short time after taking the drug,his ability to walk or even stand was terrible. He had no strength at all in his legs and could not even pull himself up from a chair, his entire body was in pain,This is the first time I had ever seen my husband cry in pain. His feet and ankles hurt him now all the time, It appears that his right ankle that was already bad has now rolled outward even more and to even put any shoe on is painful to him, he has sore that came up on the bottoms of his feet . He could not even walk with a cane, I had to purchase a walker just to allow him to get anywhere, and even with the walker a one minute walk takes over 5 minutes. The benefits of this medication certainly are not worth the problems that he has had to deal with from the use of it.
My husband has CMT 1. He has been dealing with problems with balance and all the issues that come along with CMT. However he has been managing and getting along. He was recently been diagnose with a spot of cancer out side of his pancreas. The Dr put him on a Chemotherapy piled called Lenvima (Lenvatinib). We knew to expect some symptoms just as you would with a chemo medication, However after a short time on it his legs began to not have any strength at all, he could not even pull himself from a chair, walking was almost impossible , even with a cane it would take him 10 minutes to walk a very short distance and he was hurting so bad, mainly his ankle and feet and legs. I have never heard my husband cry in pain before until now. I was so concerned , then I did some research, Found out that the chemo medication is most likely the cause of this! And that the condition he is in now may not reverse. We were not told this at all. I am afraid now what the future will hold. As now he uses a walker just to get around, and we are in the process of looking into a mobility cart for when he has to go out.I certainly feel that the benefit of the Chemo medication does not outweigh the problems that my husband is suffering everyday due to taking it.
I am 68, CMT2 and was diagnosed with rectal cancer. Had one 5 day chemo treatment and went home after . In 2 days I had to be hospitalized as I developed severe lung infections, almost dying. Hospitalized for 3 weeks before I could be released. Went to the rehab nursing home as I went from being able to walk with a walker to be unable to walk. The Chemo has caused me to be unable to drive. Recent workup at Stanford indicates I will never be able to drive. Ironically, it appeared I was in recovery per the 3 and 6 month checkups. Recent imaging shows the cancer has returned in a slightly different area. Quality of life will need to be considered when considering if surgery .
My brother hasn’t officially been diagnosed with CMT, but probably has it. He was diagnosed with Lymphoma. After 1 treatment, he went from walking to being bed ridden. I found out from my SIL that my brother was given vincristine which can cause rapid deterioration in people with CMT. Other chemos to avoid are Eribulin, which can further weaken the legs. Also, oxipalitin is another. It is important to inform your doctors & also do your own research. So sorry for everyone. I too am a victim of CMT, plus my 5 yr old daughter. Did you know there is a 50/50 chance of giving it to your offspring! WOW! I did not know that. My daughter is being treated for toe walking which is probably a result of CMT. Be informed, be empowered! BTW, my brother is 53 years old.
I have cmtA1 thinking I may have cancer… hoping for it to be non cancerous but gonna be getting testing. I pray its not I am only 34 and already have trouble walking… idk what my husband would do if I began further disabled from treatment. Its like you could die or be a burden to your family… I have had a large hard lump in one of my cervical lymph nodes for a few years thats been slowly growing . I have a cough that never goes and I’m tired all the time… recently I’ve been getting dizzy spells and not feeling myself. Been to scared to check it out but tomorrow I’m finally going to go to the doctor and request testing…
Mine was also jump started with chemo (22 treatments of 5FU). They asked before starting if I had neuropathy and I said no. When I started having the neuropathy they reduced the oxipalitin after 8 treatments and stopped with that particular one after 12. It wasn’t until five years later at the age of 80 that I was diagnosed with CMT2. After reading up on it, I realized I had symptoms of it for about twenty years but hadn’t the neuropathy yet. Use a walker now.
Interesting story Karen. Glad you are doing well despite challenges.
I too, had cancer treatment (24 chemo treatments, 5FU) in 2003-2004 which seemed to have jump started my neuropathy. Just diagnosed with CMT 1 year ago at age 62.
I’m glad that someone is making that connection. My oncologist and neurologists don’t seem to get it.
Warm wishes Chris in SanDiego
Karen my heart goes out to you. My husband has CMT I went on line and read everything I could on this disease. My husband under went Chemo and Radiation tx in 2016 which I warned the doctors that he had CMT and that chemo is toxic to the disease they knew it could increase issues with. CMT but we were dealing with throat cancer . I noticed that it did jump start the CMT he did well and was on the road to recovery then Covid came along and then in November he was diagnosed with Lung cancer all i thought was here we go again they wanted him to undergo chemo and radiation once again I warned them of his CMT and his issues with his last experience with the treatment so they decided to use steroids before and after chemo and do them three weeks apart after first tx. he lost all his hair and the tremors were much worse he had more unbalanced issues so I called doctor and told him what was going on , he still felt it was the only option we had. Long story short after 3 tx. he was rushed to hospital with blood clots in his lungs and Radiation Pneumonitis and unable to walk he spent 28 days in hospital with many new issues he was then transferred to a Rehabilitation center in hopes Physical Therapy and OT may be able to get him walking again or at least transfer from bed to a wheelchair. This has become a nightmare and doctors need to be made aware of the dangers of Chemo tx with a disease like CMT.