Hi I have Follicular Non Hodgkin lymphoma and have just had my second chemo of six sessions, I had the most painful neuropathy this morning getting out of bed, it was in my side radiating into my lower back, honestly I have never experienced pain like it and when I touched the area with my hand it felt like an electric shock, horrible, After a hour or so it gradually became bearable however still painful to touch. no one had mentioned this as a side effect to me. Any people out there had this? More importantly is this going to be every session or a one off
Hi again Ice cream girl unfortunately Peripheral neuropathy (PN) is one of the more common Side Effects of Treatment....... and I had this all the way through my main 2 years treatment (late 2013 to late 2015)...... but as I had a lot of treatment it went on for a good 18 months post my last treatment.
But I have to say that it is more common for PN to present at the periphery of the body as in the hands/fingers and feet....... and would normally not just clear up...... but linger.
Are you by any chance having Growth Factor Injections?...... as this can cause significant pain up and down the spin radiating across the back.
Where is you growth area/mass?......... As treatment starts to work this in itself can cause pain. My main mass was in my neck and it was basically the size of a brick 21cm x 10cm x 6cm. By the time I went for my first blast of chemo it looked like I had swallowed a brick!! It was something out of a Tom and Jerry film. My jaw had seized, my gums had swollen and we're coming up to cover my teeth. I was having great difficulty eating and was living on a liquid diet and my breathing was being restricted and the pain was off the scale.
I had an initial 15min blast of Vincristine and It was amazing the difference that first a Chemo blast made. Over that first night the staff kept coming into my room to look in my mouth as my teeth were slowly re-appearing to the point I actually had breakfast including toast that morning. A few days later I sat with the family and had some Christmas dinner and yes the pain started to reduce but I slowly had different pain as the muscles and nerves that were taped in the mass started to stretch in the new space.
What is the name of the treatment you are having...... e.g. my main chemo was R-EPOCH?. Some of the drugs used in these regimes can cause of PN....... specifically Oncovin (Vincristine).
R&B is used a lot for treating FL....... but Peripheral neuropathy is actually not specifically mentioned in the drug info sheets as being a normal side effect....... but what is normal?
I had over 700 hrs of Rituximab and had no problems with it......... I have not had Bendamustine ........ but pain in your back, tummy or chest areas are listed in the info sheets for both Rituximab and Bendamustine and are categorised under possible Allergic Reactions........ this can happen even although you have been on treatment for a while.... it did for me.
As this is new...... I was always told to call in anything new so that my team could assess if it is a problem and take action if required.
Do you have a number that you can call - I could call the clinic to talk with my CNS during normal working hours....... but I also had a Chemo Care number I could use over weekends and holidays.......
...... honestly, it's only a phone call. I learned rather quickly to not to sit on anything that was in anyway unexplained...... my first one had me in A&E a few days later 
Just be careful.
