Newly Diagnosed

Hi Kiki Le Splodge and a warm welcome to 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.

The New to Community is like our reception desk where we look to direct you to the best part of the Community for you to get support. The Community is divided into dedicated Cancer Support Groups (Discussion Rooms) so can I recommend you join and post in our dedicated General Non-Hodgkin's Lymphoma support group. This is a safe place to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.

To connect in with the group click on this link> Non-Hodgkin lymphoma then once the group page opens click on “Click to Join” when the black banner appears or “Join” under “Group Tools” (this all depends on the device you are using)

When you are ready you can introduce yourself by clicking “+new” or “+” in the top right next to the group title. You can copy and paste the text from this post into your new post.

I will keep an eye open for you in the group and will give you further information and support.

Thank you

Each is different, no typical type.

Fatigue, nose bleeds are symptoms.

Diagnosed 2021 August.

Two sessions of Plasma exchange as I had Hyperviscosity.

First cycle 2 bags of Bendamustin, one a day. Next 5 cycles of 2 days,  first  Retuximab  then Benfa. Day 2 Bendamustin.

1. Took up to 15 months to recover due to being neutropaenic. 

Hi, I have Lymphoma too so know the dynois can be hard to process and in regards to coping with it, my advice would be stay positive and get plenty of rest so you can keep an level head, keep busy and your brain on the go so you are also focused on something, weather its writing an dairy getting your emotions our on paper will help you unwound at drink some peppermint tea, fruit tea at night time, maybe listern to relaxing music to help you drift off to sleep. 

Hope this will help 

Kind regards

Lou-bear. 

Hi Lou_bear and I see this is your first post so welcome....... the Community is set up as dedicated support groups so this is a list of our Lymphoma groups.....

Hodgkin's Lymphoma

General Non Hodgkin's Lymphoma

Follicular Lymphoma

Diffuse Large B-Cell Lymphoma

Mantel Cell Lymphoma

T-cell lymphomas

These groups are safe places to connect with others who understand the journey.