Hello,today my mum was diagnosed with wm,a little background on her,shes 73,uterine and ovarian cancers successfully removed in 2006 and bowel cancer in 2015,she had the all clear in 2021 but they would check in on her as she has lynch syndrome,she fell over last year and hurt her back,after a few months went to the drs and an xray showed 2 collapsed vertabrae,diagnosed with osteoperosis back in November (she was sure it was just a pulled muscle),have been trying to get an osteo appointment since last year and dr said have a blood test first,3 test later she was off to haematologist,she had a bone marrow biopsy and ct scan,consultant was seen today whom confirmed wm,as she is now quite frail they have decided to put her on a chemo drug which is fairly new Bankinsa (I don't think I've spelled correctly),im writing here because I dont really know anything about this sort of cancer and am out of mind mind with worry (as everyone would be),can anyone tell me anything about it?,she has been appointed nurse specialist but as I'm her daughter and not the actual patient don't feel like I can call them as I'm sure they are busy with actual patients,thankyou x
Hi Vine and welcome across to this corner of the Community. I am Mike and I help out around our various Lymphoma groups.
I am so sorry to read about the journey your mum has been over the years. Having lynch syndrome does unfortunately open the door for developing Lymphoma.
Lymphoplasmacytic lymphoma (Waldenström’s macroglobulinaemia) is a type of low-grade (slow-growing) non-Hodgkin lymphoma. It develops from B lymphocytes (a type of white blood cell) that become abnormal and grow out of control.
The above links is taken from 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 Lymphoma Online Support Groups for patients 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.
I have talked with a good number of folks with WM who have never needed treatment and some who have had treatment. There are a few folks in the group with WM so let’s look for them to pick up on your post.
I had a search for the chemo Bankinsa but can’t find any information. If you can find out more information we may be able to help more.
As for your mum’s Heamatology Cancer Nurse Specialist (CNS) they are there for this specific reason so don’t worry about contacting them as this is their job.
On the whole Liw Grade Non Hodgkin’s Lymphomas are very treatable with good results. When I was having my main chemo back in late 2013 (hit my community name to see my story) there were a good number of 80 year old patients having their treatment and they did very well.
My chemo was full on so I was an inpatient for 6 days/5 nights on my IV 24/7 for over 120hrs fir my 6 cycles so over 750hrs of chemo and honestly I did very well……do remember that I was having Beverly strong treatment and I am here, living as good a life as any 66 years old can 8 years on.
We are always around to help out as best as we can.
I did a full site search and did not get any hits on Brukinsa and on the other name it comes under - Zanubrutinib
You can put Waldenstrom's macroglobulinaemia into the search 
tool near the top of the page and hit ‘Everywhere’ and this will bring up all the past posts and as always you can hit reply and see if the members are still looking into the community.
Open to any further questions ((hugs))
