• 4 replies
  • 12 subscribers

Hello, my name is Helen, I am from Scotland. I have DLBCL, diagnosed after a lump appeared on my neck. My question is do many of you suffer with neuropathy in your fingertips? Mine started a couple of weeks after my first Chemo. I am about to have my 3rd. This numbness and tingling is driving me nuts and just wondered how others cope with it. 

  • Hi Helen  and welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Lymphoma groups...... and I am up in Inverness.

    I have a different type of NHL diagnosed way back in 1999 with a rare, incurable but treatable type of Skin NHL (CTCL) Stage 4a so although my Lymphoma ‘type’ is different I know this journey rather well.

    Unfortunately Peripheral Neuropathy is one of the side effects that come along. Do talk this through with your team as there are things that they can do including reducing one of the drugs in your treatment (R-CHOP?) that is responsible for developing this.

    I had it bad in my hands but as my treatment was bing used to get me ready for Stem Cell Transplant so I had to have the full effects of the treatment. My Specialist Cancer Nurse did advise me to get a few stress balls, I found a couple of small hand sized rugby balls and I regularly worked my and hands and fingers.

    This helped get the blood moving through my hands and in turn exercised my nerves and muscles. This helped but did not remover it...... it tends to clear up quickly after treatment are completed.

    I always highlight the Lymphoma Action website. Lymphoma Action is a small but very active UK Lymphoma Specific Charity who have lots of good reliable information, videos and run regular Regional Lymphoma Online Support Groups (There is a good Scottish one) and a great Lymphoma Buddy Service where people can be linked up with someone who has walked the same treatment journey.

    Always around to help more or just to chat.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Aw thank you Mike, I'll definitely speak to the team next week and get some stress balls. Anything is worth a go. 

    Helen x

  • These problems are just one of many things that we have to navigate this journey. I should also say that you do need to be among to drink 2 litres of water every day as this keeps your kidneys protected but also keeps you hydrated and good hydration helps blood flow.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Oooops!!!  Not drinking enough, thanks again for the advice, I'll be increasing the water intake then Grin  My wee Grandson gave me a stress ball last night and will keep up the exercise on my hands. If it helps a little, then I will feel less stressed about it.

    Helgz x