Hi , I’m a 23 year old female . I was diagnosed with Hodgkin’s lymphoma at 21, did 12 chemotherapy’s in 6 months and finished last February. From last February (2024) until October (2024) I was doing well. Suddenly in October I started having nerve pain.. it’s in my hands and feet. It’s a burning painful sensation. Feels scary. My doctor said it couldn’t be a side effect of the Vinblastine drug and prescribed gabapentin for it. I’m on a low dose so I think that’s why it’s not helping. Feels like it’s getting worse and flares up at night . Wondering if anyone else experienced this and if it went away because it’s making me super anxious .
thank you!
Hi HL25 and a warm welcome to this corner of the Community although I am sorry to see you joining us and to hear about your post treatment challenges.
I am Mike and I help out around our various Lymphoma groups.
I don’t have Hodgkin's Lymphoma but for some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well.
Peripheral neuropathy (nerve damage) (PM) post treatment can unfortunately happen.
Over my 2 years of main treatments from late 2013 to late 2015 (See my story) I had a lot of aggressive treatments so I had bad PM and it took a good 2 years for most of my PM to clear post treatment….. but it’s not all gone.
In the early days I was actually sent to see a Physiotherapist who gave me exercises to help stretch both my muscles but also help my nerves….
But even now, 7 years on I still have nerve problems as the nerves and indeed muscles in my neck where my brick sized mass was are basically permanently damaged with the pain radiating across my neck but also down to my hands… not a great thing being a life long guitar player.
The PM is always worse during the winter months as I am less active although I try to do the exercises that I was given by my Physiotherapist….. but it mostly goes away during the summer months due to me being more active and the warmer weather.
But it does not stop me getting in with life ((hugs))
