Hello....I am new to this group and am hoping I will gain some more information about my "condition".
A brief history;
I am in Melbourne. Australia and was diagnosed with Mantle Cell Lymphoma in May 2020 at the age of 71.
My course of treatment has been R Maxi CHOP (with chemo etc), Radiotherapy and Rituximab.
A stem cell transplant was not recommended due (in part) to my age.
In February 2021 a small tumour was detected in my neck (via a PET scan) and I was prescribed Ibrutinib with Rituximab infusions.
I did have a few side effects from Ibrutinib, so Acalabrutinib (with 8 week Rituximab infusions) was suggested in September 2021.
This has been the course of treatment since that time, but I still have the following side effects:
I have advised my medical team of these side effects, but I am interested to hear from other members of the group who are having MCL treatments.
Many thanks
James73
Hi James73 and a warm welcome (from down under) to this corner of the Macmillan Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Lymphoma groups.
I don’t have Mantle cell lymphoma but I was diagnosed back in 1999 with another type of low grade, rare and incurable type of NHL Stage 4a (CTCL) so although my Lymphoma ‘type’ is different I appreciate the challenges of this journey well.
The post treatment ‘left over’ you have listed sound normal and can take some time to reduce and go.
My journey was rather different but you can hit my community name and see my profile.
Lets look for some of the group members 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 help more or just to chat
