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.
