New here… hi everyone

Hi again Nictx and a warm welcome across to this corner of the Community although I am sorry to see you joining us and to hear about your WM diagnosis.

As I said in your post in the New to Community I am Mike and I help out around our various Lymphoma groups. 

Lymphoplasmacytic Lymphoma (LPL) is a rare type of Low-grade non-Hodgkin lymphoma…….. with Waldenström’s macroglobulinaemia (WM) being the most common type of LPL. 

But for some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma)….. your WM is about the same 8 in a million rare as my Lymphoma.…….

I eventually reached Stage 4a in late 2013 when a second, more rare (4 in a million) type of aggressive Peripheral T-Cell - Not Otherwise Specified NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well.

There are a few members in the group who have WM so let’s see if they are still looking into the group.

Have you been told the ‘exact’ name of the Chemo you are having?….. for example my chemo was called R-EPOCH.

As part of my many treatments (My story is rather complicated See my story)…….. my very aggressive R-EPOCH was over 6 cycles. This had me in hospital 5 nights/6 days on my 2 IV pumps 24/7 for over 120hrs….. and honestly I did not have any significant problems.

As an encouragement when I was first diagnosed our daughters were 14 and 18…… I continued to work for 12 years in a demanding teaching job and yes had various treatments over the first 14 years then in late 2013 I had to have 3 years of full on treatments…..

But we went on to see our daughters graduate, get married, set up very successful businesses and provide us with 4 beautiful granddaughters….. I turn 69 in Nov and am now a few months away since my last treatment 9 years back and we continue to look forward to what else life has in store first us to enjoy.

Thanks so much for replying, you are an inspiration and I hope I can be strong like you and fight this. I am unsure what type of chemo I am having, hoping to see the consultant this week and find out. I know I am having immunotherapy but that’s as much as they have decided as of last week. I will let you know once I know, any info is so helpful and much appreciated. Thank you 

Hi again... Immunotherapy is rather different from Chemo so it will be interesting to see what you are having.

Getting clear information at appointments can be had but you may find these two links helpful....

Top tips for getting the best from your appointments

Questions to ask your medical team about Lymphoma