Hi,
I was diagnosed with WM back in 2018, had treatment in 2019 and I have been monitored since. Unfortunately the last exams have not been encouraging as WM is back and I would need to do a second treatment. I am female and just over 50, not the normal patient for WM.
I have been given two options for treatment:
1- To have Brukinsa for many years until the body develops its own antibodies and they have to use another treatment. I would like to ask if somebody is under this treatment and what are the secondary effect for taking it on a daily basis, what is the body reaction to it? I have never taken any medication for a long period of time, never been on the pill therefore it feels estrange to take a medication for an undetermined number of years.
2- The second option is a more straight forward chemotherapy, shorter but with a great impact of your body, Bendamustine & Rituximab. The treatment will last for 4 months and hopefully last for many years. I have the same question as No 1, has sb taken this treatment, what are the side effects?
There is not a way out but I would like to take an informed decision based in experiences and own judgement. It is scary to know that either treatment won't last for ever and I will be thinking in a treatment few years down the line.
I will appreciate your valuable experience.
Thanks a lot.
Hi LivingwithWM and a warm welcome to this corner of the Community although I am sorry to see you joining us. I am Mike and I help out around our various Lymphoma groups.
I don’t have Waldenström’s macroglobulinaemia but I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low-grade non-Hodgkin lymphoma eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.
There are a number of group members who have WM so let’s look for them to pick up on your post.
You can also look through the various posts (hit the main group name and scroll down) and as always you can hit reply and ask some questions and see if the member is looking in.
Always around to chat.
Hi again LivingwithWM although I was diagnosed over 24 years ago and had lots of treatment for my type of Low Grade NHL….. I turned 68 last Nov and am still living a great life…….
