Waldenstrom macroglobulinemia

Hi Alacoque,

A big thing I learnt with Hodgkins in 1984, and still now with WM is the patient in the next bed/chair ain't you. That said I'm still around to get WM  after 10 years of watch and wait MGUS. Hope your WM management goes well and here to a lengthy healthy future.

Yes, let's embrace life and make plans!

Hi Lou4

Any news about your treatment plan?

Hi Lou4, I was diagnosed with this at the same time as Non-Hodgkin Lymphoma "B" Cell, July 2018. Had Chemo for NHL which went well. IT was watch & wait for WM. In the past few months it has reared up and my Consultant has now having me start treatment next week. 

I was very positive through NHL & am the same for WM. I think being like this helped,

I hope all went well when you saw the Haematologist.

Gabbie

What sort of treatment will you be having? Hope it all goes well.

Hi Alacoque, 

I am commencing treatment tomorrow and will be taking a drug called ZANUBRUTINIB. Relatively new drug and is in tablet form. Just have to wait & see. Hope someone on this forum knows about this drug and can help.

Hi Alacoque,

On Zanubrutinib unfortunately I cannot comment by experience.

I'm in the WM clan and completed, on trial (Rainbow) 24 weeks of Ibrutinib orally at home. The trial included 8 doses of Rituximab. This use of Ibrutinib is not supported by NICE hence the therapy trial.

I'm now on a daily dose of 400mg Ibrutinib. I keep a diary and am responsible for my administration. The trial is targeted for 5 years study and for the patient its for life unless cut by ineffective or toxic reaction. 

Hopefully I'm not misleading in me reflecting on my treatment or regimen. I had Classic Hodgkin in 1984 on MOPP chemo. I know what I recommend targeted beats chemo.

My only questions have laid around my comorbidity and medication programme. Be happy that your GP prescribed meds don't conflict with the cancer inhibitors or your overall wellbeing. It's all alchemy, apothecary and physicians. A bit like witches in the 'Scottish Play'.

Hope all goes well for you 

Hi Gabbie

Hope the treatment is going well and any side effects are tolerable. xx

I know it's definitely not much compensation, but it must be good to know that taking part in a trial could not only help you but maybe also help others in the future.  Hope all goes well.

True. Best care, latest drugs, top Doctors.

Having had 30+ years clear of Hodgkin, couldn't give blood and heading for 'FSPO' (That's for spare parts only) for me a no brainer.

Happy to be a 'Lab Rat' now for this Rituximab Ibrutinib cocktail for WM. If it helps me then great, if it helps for others even better.

Hope all goes well for you.