Triple Negative BC survivor with Neuroplexopathy

Hi, I am Jennie and I live in Ontario, Canada. My story-lumpectomy 8 years. Then I had Chemo (5fu), 25 regular radiations and 5 to lumpectomy scar. 2 years later pain began in finger tips and moved to whole hand, up arm, down shoulder blade. My fingers are paralyzed now.

My pain treatment is-Lyrica 4xday, Effexor 3xday

My pain levels are bearable if I 1-restrict my movement ,2-keep my mind busy....I use iPad to distract with research, word games, Netflix, etc.. 3-control temperature of my skin.

Either my pain has gotten worse or the dosage of medication isn't working quite like it use to. I am maxed out on my present meds.

Has anyone explored HBOT treatments? Are there others with a similar condition who have tried other pain treatments? I would really like to hear your story. And feel free to ask me any questions. Jennie

5 Replies

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  • What the heck is HBOT stand for Jennie? (Sorry, I hate acronyms)

    Hypobarric Oxygen Treatment is available at the Toronto Western Hospital. I have not persued this option yet. I need a referral from my family doctor or neurologist first. I was interested in joining a Clinical Trial. It involves many weeks of treatment Monday to Friday. That is a bit tough if you don't live in or near Toronto, Canada. I am not sure what to think. Jennie

  • I am a Triple Negative BC survivor too since 2003. I noticed you had 5FU chemo plus radiotherapy. Actually I had Epiprubicin as well! Very interesting as I spent 2years trying to convince my oncologist that my small fibre neuropathy was caused by these drugs but she said some chemo does but not the drugs that she gave me. My neurologist said after all the nerve tests "Just because it doesn't normally cause does not mean that it didnt". Fairly comforting at the time but you are the first person I've heard other than myself to get neuropathy with 5FU but I am sure there are many more out there!

  • Hi Gerbils3433,

    It was very nice of you to reach out to me. I know no one with nerve-damaged hands/arms. I have it only on the left side, which makes me think that it was likely a combo of the Chemo/radiation and perhaps genetics. Are you Ok with your pain treatment? I am very restricted. I have decreased my activity to ride through the pain. Then when I feel Ok , I go out for a walk/shopping and my hand throbs. I wear a soft cotton scarf hooped around my neck so I can use it as a sling. My hand seems better elevated.

    Tell me more about your story if you feel comfortable sharing. Jennie

  • Hi Jennie I am ok with my pain relief now. Still get the burning in my feet and occasionally in my hands. The worse thing is the cramp in my calves, nothing seems to relief that. I have taken gaberpentin and lyrica but had to stop as I was not able to think straight and get my words out. I don't know whether it's because the drug is really meant for epileptics but I hated the effect it had on me. The pain clinic put me on Targin ( oxycodone) 20mg twice a day this has helped a lot but is very addictive and if I forget to take one, then within hours I feel very weird. My nose is all stuffed up and I have the shakes. Within half an hour of remembering I feel fine. Sometimes I use soluble paracetamol 1gm when the cramp is all consuming. As I cannot feel my toes I usually walk with two walking sticks,so I do not trip. I cannot afford to fall over and break something. I am ok around the house but the area I live in is quite small so plenty of things to grab if I feel unstable. To be honest I've had this condition for so long it's now away of life. I just look at if I hadn't had the treatment I may well of died. Last year I found out that I had inherited the Braca1 gene as my sister had ovarian cancer. The fact that my BC was triple negative and my father was Ashkenazi Russian Jew,makes me a greater risk of also developing ovarian cancer so I opted for a total hysterectomy. Since then I have developed hypothyroidism and my Thyroxin levels are not right yet so I am feeling very out of sorts. No energy whatsoever, a hoarse voice, numerous mouth ulcers,feeling cold and shaky and the worst thing a feeling of dread that my cancer has come back. I don't suppose the hysterectomy has helped either. Still life goes somehow and I moved to Spain to lead a quieter life and to put my feet up in the Sun! I am told this area is one of the healthiest places in the world to live, as I am surrounded by salt lakes. Just hope that a bit of it rubs off on me very soon!

  • Salt water and sunshine sound very good to me right now. I live in Muskoka, Ontario. Many lakes are still thawing. But today is sunny. Just wish some of that warm air would blow this way.

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