Hello,
I am a 65 yr old femal from Florida, USA and new diagnosed with the rare form Waldenstrom Macroglubolinemia about to start treatment at Sylvester Cancer Center University of Miami. I thought I’d introduce myself and find out if there are others like me? Thank you.
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A great big welcome @arrteba thanks for saying that you are in Florida.
As you realise this is a UK website and countries do diagnose and treat patients in a different way and sometimes with different drugs.
I was diagnosed with another blood cancer Dec 2003 and my Christmas card crossed with a friends in California and she had also just been with my blood cancer. She started treatment immediately and I have also been on active monitoring. She is now in her 90’s and well
However what we do often share is the same fears, emotions, questions, practicalities etc.
The main thing is to really look after yourself and do not underestimate the emotional impact on us and our families and friends…
Please do keep posting how you are doing you are not alone here
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Hi @arrteba,
As @Erica has said you in the Colonies may receive differing therapies, driven by Lawyers, Insurance and Private Health Care.
I have Waldenström macroglobulinaemia (WM) and after 10 years of ‘Watch and Wait’ I’m now on a drug trial based around Rituximab and Ibrutinib Both been around for sometime but for the National Health Service (NHS) this side of the pond it’s not a funded drug cocktail option for Waldenström macroglobulinaemia (WM) where DRC Chemotherapy is the norm.
Treatment is going well but as with all therapies there’s side affects but the human body is a wonderful complicated organism. Fatigue, monitoring the heart for AFib etc., and skin irritation to name a few. I’m happy to be a Lab Rat with good support including all relevant Consultant 'Oligists where needed.
The Doc says “take plenty of liquids” but didn’t specify what so where did I leave that bottle 
opener? Keep positive!
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Hello @arrteba, welcome to the forum! So sorry to read of your diagnosis. I was diagnosed with Polycythaemia vera (PV), a different blood cancer to yours, although I’m sure you’ll find others here who have experience of Waldenström macroglobulinaemia (WM). You’ll be able to search the forum for useful information in various threads here from others living with Waldenström macroglobulinaemia (WM).
While I’m a Brit, I also live in the US like you, over in California. Howdy! You might find if you check LLS.org that they have some great, slightly more US-oriented information. Here’s their information about Non-Hodgkin lymphoma (NHL), which I believe Waldenström macroglobulinaemia (WM) is an indolent form of. Although there are differences between UK and US cancer care, I’ve found terminology and treatments match up pretty well. In fact, I note many Brits use American spellings for their blood cancers and other terminology so you might feel right at home on the forum!
Keep us posted about how you get on.
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Hi, I have LPL (Waldenström macroglobulinaemia (WM) is a form of LPL). As well as belonging to this forum I am also on the Facebook forum for the “International Waldenstrom Macroglobulinemia Foundation” (it’s a very active site with mainly US participants ) and they also have a website https://iwmf.com/ and issue a weekly Waldenström macroglobulinaemia (WM) newsletter that may be of interest to you.
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Hi @CaroleCW thanks, but I am personally a bit wary of non UK websites and their information. This is just me
Totally agree we all have to be careful of websites that give out misinformation/disinformation and do careful research and validation on any site to assess if it’s useful or not , but in my experience there are a lot of bad U.K. websites as well as overseas sites .
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Yes, I completely agree with you @CaroleCW
Thank you Erica. Best wishes to you. Thanks for your explanations! Be well.
Sincerely,
Ellen
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