Waldenstrom's Macroglobulinemia Community
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Avatar universal

What should I expect?

My dad was diagnosed with Waldenstrom.. I have no idea what I can do, or even what I should expect? Can someone just tell me briefly what it's like to live with someone with WM, so maybe I can be a bit more prepared for when his symptoms start to kick in... I'm so scared... I don't know what to expect.
3 Responses
1704224 tn?1307477007
Depends on his age and health. A healthy person with WM should do just fine with 6-8 cycles of chemo, however the biggest danger with WM is the possibility of it morphing into
Multiple Myaloma, a much bigger problem

Avatar universal
Hi hun,

My dad passed away 4.5 years ago from an infection but he had WM.  He lived about 5 years with it.  He had numerous symptoms and if you read about it on some of the website, there are lists of symptoms people can have, but some will not have them.  My dad had headaches mainly.  He developed alot of other symptoms after he started the Chemo which is normal.  The flu like, just feeling tired and weak.  There is nothing that can really prepare you for his symptoms. He may feel great one day and in bed all day the next.  Just really depends on how he handles the therapy  My dad had 2 chemo treatments and parathesis??? (they take his blood out, run it through a machine to "clean" or "thin" the protien as they called it")  The main thing he was told was that he needed to just be careful around those that were ill because as he was doing his Chemo, it caused your immune system to be low so you are more apt to getting sick.  Which is what eventually caused my dad to pass away.  He got Strep and ended up in the hospital and it turned to sepsis.  I don't mean to scare you, I just wish I knew what to expect and if someone would have told me all this I would have been more cautious for him.  I am truely sorry that your dad has been diagnosed.  Anything that is not cureable is a horible thing.  At least now (even in the last 4 years!) they have learned a lot about this rare blood cancer and most people are living alot longer with it.  Heck 4 years ago they were saying it was not heriditary and now they are saying it is!  Just hang in there and enjoy the time with your dad because I wasn't prepared when it happend and I wish we would have talked more before he couldn't.  Big hugs!!!!
Avatar universal
I lost my father to waldenstrom's on the 16th July this year. After months of blood transfusions and platelet transfusions he contracted an infection which they couldn't locate and after a fortnight the waldenstroms took his life. I dont want to alarm you but just be prepared how dangerous an infection can be to waldenstroms sufferers.
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