Hello,
I have recently been diagnosed with Waldenstrom's and noticed that there arent many on this forum with it, so wanted to contribute my story and support. It was a bit of a shock to be diagnosed under 50, and it came about through lack of energy, prolonged cough, breathlessness when climbing stairs, weight loss etc. I was a pretty fit individual doing a lot of indoor cycling and I just couldn't do it anymore so went and got checked out. After CT scan showed lympth nodes lit up, and blood tests showed high para protein levels and anemia it pretty quickly got diagnosed down from expectation of lymphoma, to suspicion of Waldenstrom's to confirmation of Waldenstrom's stage 4-b (with symptoms) following biopsy and bone aspirate. I have been on two courses of Dexamethasone which have been a trip (surges of energy, appetite, weight gain, and insomnia), but that was preferable to jumping into chemo over Christmas. I am now reviewing options between Chemo (Bendamustine + rituximab - "BR") and a targeted treatment call Zanubrutinib (marketed as Brukinsa). Zanubrutinib is not available on NHS unless you have already gone through a round of BR, but I would like to avoid the downsides of chemo if possible. Hopefully I will know the path forward in the next few days.
Now that I better understand what was going on, I have got back into cycling (at very low intensity), yoga, walking and thinking about how I take on the challenge ahead. Its going to be a journey, and not one I had intended on taking, but will figure it out as I go.
The things I wonder about are how effective treatment will be, how long before the inevitable relapse, what amazing new treatments will be available then etc. A lot of unknowns, but it is what it is.
I'll update how I get on with treatment recommendations, NHS vs Private, how treatment goes, etc in case it helps anyone on a similar journey. All the best.
The forum rightly said not to use your real name, so I have gone with Waldo2025.
Hi again Waldo2025 and well done navigating across to this corner of the Community.
As I said in my reply to your post in the New to Community I don’t have Waldenström’s macroglobulinaemia but I have been on my Lymphoma journey for over 25 years (diagnosed at 44) with my rare (8 in a million) incurable but treatable type of Skin (Cutaneous) T-Cell Lymphoma…..
There are over 60 types and sub-types of Lymphoma so we done have specific groups for every type….. but there have been a number of folks with WM post n the past so let’s look for them to pick up on your post.
Lymphoma is an unusual cancer at times, my consultant back in 1999 told me that I had to see my Lymphoma to be like a chronic health condition but unlike many other chronic conditions like say diabetes, you are a n treatment for life and when it goes wrong it goes wrong quickly…… Low-Grade Lymphomas are only treated as and when required.
Our daughters were 14 and 18 when I was first diagnosed… and I continued to work for 12 years in a demanding teaching job on a full timetable and yes, I had various skin treatments over the first 14 years.
The longest remission I had over those first 14 years was about 9 months…… this then triggered more treatment.
Then in late 2013 my second rare (4 in a million) more aggressive fast growing High-Grade NHL - Peripheral T-Cell NHL came along taking me to stage 4a……. triggering some intensive treatment between late 2013 to late 2015 (chemo, radiotherapy and 2 Allograft (donor) Stem Cell Transplants)……. but we went on to see our daughters graduate, get married, set up very successful businesses and provide us with 4 beautiful granddaughters….. I turned 70 last month and I am coming up to 10 years since my last treatment.
Always around to chat.
