Hello my wife was diagnosed with lpl 2 years ago she has had 1 set of treatment and although it is remission we find it is the other problems it causes that interfere with her normal actions. Such as hearing problems , peripheral neuropathy and circulation problems . She now has to use a frame or cane. I try to keep her upbeat but can be hard at times hope it's OK to post this
Hi Syrus1066 and a warm 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 yes it is OK for you to post this is what the community is here for.
I don't have Lymphoplasmacytic lymphoma and Waldenström’s macroglobulinaemia but I was diagnosed way back in 1999 with a rare, incurable but treatable type of Non Hodgkin’s Lymphoma Stage 4a so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.
Hearing problems, peripheral neuropathy and circulation problems are unfortunately normal Side Effects of Treatments but these will clear up a few months after treatment is finished. It took a good few years for my peripheral neuropathy and circulation problems to clear up (but I had a significant amount of treatments) although I am now deaf in my right ear, 50% deaf in my left and wearing hearing aids.
Following my second Stem Cell Transplant (hit my community name to see my story) I could not work and was in a wheelchair and it took a good 4 months physiotherapy to get me back walking.
How long out from her treatment is she?
Always around to help more or just to chat
My peripheral neuropathy lasted a good two years after my final treatment but it started to improve a year out but took the extra year to completely go.
Do check out the Lymphoma Action website. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos and run regular Lymphoma Online Support Groups with a few groups specifically for Family and Carers...... I highly recommend these groups as there is nothing better than talking with other who have walked the journey.
They also have a great Lymphoma Action Buddy Service where people can be linked up with someone who has walked the same treatment journey. They also have a Lymphoma helpline on 0808 808 5555 where Sharon or Nic will be on hand to give you some support - open every week day from 10 till 3.
