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Neuropathy

A MyMyelomaTeam Member asked a question 💭
Long Island, NY

Shipmates,
Did your neuropathy come on gradually after taking MM meds? How long after meds did your neuropathy start? So far I’ve been blessed no neuropathy but plenty of lower back pain. I’m wondering if neuropathy is another phase of MM. is this what I’m looking forward to next? Thank you so much. Wishing you a blessed day with smooth sailings.

February 4, 2023
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A MyMyelomaTeam Member

My neuropathy was from velcade and was one reason I dropped it. It came on quickly and never went away in my feet. Caught it early before it became intolerable. I take 300 mg of gabapentin at bedtime to relieve it from waking me up. I also bought diabetic socks which are looser fitting and wide shoes. That all keeps it manageable.

February 4, 2023
A MyMyelomaTeam Member

My hematologist/oncogist says about 60% of his patients have chemotherapy induced peripheral neuropathy (CIPN). Mine started when I was doing my induction chemo before my SCT. At about 8 weeks into my treatment the Velcade (Bortezomib) caused my feet to “vibrate” - no other symptoms at that point. It was like I was standing on a floor that had a motor under it - like for a ceiling fan! When I got the Melphalan chemo for my stem cell transplant, it kicked my neuropathy into high gear and my toes and the soles of my feet became numb. I also experience shooting “electrical shock” kind of pains in my toes and heels. If I walk barefoot, any uneven surface feels like I am walking on sharp jagged rocks. I wear my fuzzy slippers in the house almost 100% of the time. When I go out I wear UGGs boots because they are lined in sheepskin. I take Lyrica twice a day and it has been a game changer! It allows me to sleep like a baby. (I tried gabapentin but it made me feel really high - but it works for some people.) Most of the time I am pretty unaware of my feet (and the lower parts of my calves) now. Not sure if I have just learned to live with it or if the combo of Lyrica and over the counter Tylenol have it under control. 🤷🏼‍♀️ All in all, a small price to pay for receiving life giving treatment. 🥰
P.S. I started my maintenance treatment almost four weeks ago (Revlimid/Lenalidomide) and have not noticed any change in my neuropathy (yet?). ❤️

February 5, 2023
A MyMyelomaTeam Member

My neuropathy, also, came on very quickly. First treatment was Velcade. From my feet all the way up my thighs and even had a bundle of nerves in my lower back that required PT for several months. My pain levels were at 8's and 9's., as well as many other issues. So we slowed things down and switched to Revlimid and Dex. The bundle of nerve pain is gone and the neuropathy from feet to thighs is much improved and my pain levels has been diminished to 4's to 6's. Much better! Gabapentin and Hydroco/APAP were prescribed at the time and I don't need the Hydroco most of the time. My feet are also very cold.

February 4, 2023
A MyMyelomaTeam Member

My experience is very similar to Donald (above). Revlimid for 6 months prior to SCT. I have been on Revlimid maintenance dose for last 6 months. Mild neuropathy recently stated. My feet are beyond extremely cold. I wear 2 pairs of socks, toe warmers (only but Hot Hands brand) and also sleep with heated no blanket on my feet. Wishing a healthy year ahead

February 4, 2023
A MyMyelomaTeam Member

Mine was instant - mainly from Velcade and probably due to Revlimid as well.
Very painful - I take 75mg Lyrica 2x daily and 5mg immediate release oxycodone 4x daily. Getting acupuncture, PT, cut all sweets out for sugar free dried fruits.

February 4, 2023

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