Hello,
I have recently been diagnosed with Waldenstrom's and noticed that there arent many on this forum with it, so lending 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). 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 Waldo2025 and a warm welcome to the Community.
I am Mike and I help out around our various Lymphoma groups.
I don’t have Waldenström’s macroglobulinaemia but I have been on my Lymphoma journey for about 25.5 years first diagnosed way back in 1999 at 44…… with my rare (8 in a million) incurable but treatable type of Skin (Cutaneous) T-Cell Lymphoma….. be if the many types of Low-grade non-Hodgkin lymphoma……. your WM is also a type of Low-Grade NHL and I the same-ish 8 in a million incurable but treatable types of NHL.
I eventually reached Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-cell lymphoma not otherwise specified (PTCL-NOS) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well.
Can I recommend that you join and post in our dedicated……
General Non Hodgkin's Lymphoma
………. support group. This group 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 please click on the link above……. then once the group page opens you will see a [Black - Click to Join - Banner] at the bottom of the page, click in this box and this will then confirm that you have joined the group.
You can then introduce yourself to the group by putting up your very own post by clicking [+ Create new post] or [+] in the top right of the group page.
You can copy and paste the text from this post into your new post.
I will keep an eye open for you as n the group.
