Waldenstrom macroglobulinemia

Thanks for your reply. She is due to start treatment this week, after several years of watch and wait. 

Hi Eddie

Please give her my very best wishes, and please let us know how you both get on.

hello there I'm back. Lots of hospital appts & family commitments have kept me off the forum.

At the moment I am off Zanbrutinub, started 17/03/23 ended 24/04/23, as my legs from knee downward became purple in colour,like severe bruising, After a lot of tests scans etc no-one is any the wiser what has caused this to happen. Legs still like this and it certainly not been the Zanbrutinib. My consultant has kept in contact frequently and is totally baffled, as are other Docs who have seen my legs. Just an oddity!!!!!!

And to Eddie, hello. Apart from the above which is not related to the drug, it appeared to work as my para- protein levels went from 43 to 24 in the short time I was taking it. Apart from feeling a little bit nauseous to begin with  I had no other side effects. I keep a daily diary, which can pinpoint things. I felt fine taking it, after the first week I seemed to get a burst of energy I hadn't had for a long time.

I am due to see my Consultant on Wednesday so will find out when starting again. I sincerely hope your Mother does not have any problems taking the drug and gets on well.

Look forward to finding out how she gets on. I wish her well.

Thank you so much, and I will do.

Hi Gabbie. I'm sorry to hear about your legs – but glad to hear you are going to start the zanubrutinib again. 

It's great to hear your paraproteins dropped so dramatically, so quickly. And that you had so few side-effects. Hope your appointment today went well and wish you all the best. 

Mum is now awaiting the prescriptions. I will provide updates once she has started. She has been anaemic for the past couple of months and shown some signs of hyperviscosity, so we'e hoping both of those can be successfully treated. 

Thank you very much for your kind wishes. 

Hi Gabbie

How did the meeting with your consulatant go?

Hi all, 

Just to let you know that mum started the Zanubrutinib regimen yesterday. It's an awful lot of tablets! I will update as and when. 

Hi Eddie

How is your mum doing? xx

Hi Alacoque, 

Thanks very much for checking in. Mum is now on day 11 of the Zanubrutinib (Brukinsa) regimen. So far, she has had some itching but nothing else that can be obviously linked as a side-effect. Pins and needles/numbness in the left hand, but that has been happening on and off for years.

She is suffering from a lot of fatigue and tiredness despite not being anaemic currently. This began just before day 1 of the regimen and we wonder if it's related to a separate issue, blood pressure management. She has long suffered from hypertension, and since her BP medication was increased, has had some very low BP readings which we think are making her feel light-headed, tired and occasionally faint. That isn't helping much!

She is seeing her haematologist next Friday and I will attend with her. 

PS Her most recent bloods (Monday) came back showing a touch of dehydration – this is an ongoing saga, it's very hard to persuade her to drink more fluids!