boboman1

Hi Welcome to the WhatNext Forum.

Yeah, WM is very rare. That Bendamsutine/Rituxan is pretty easy (easier and more effective than the alternative, R-CHOP). At least it should be. Rituxan is the wild card. It's generally easy, you will probably find it so, but some have more severe reactions. They're endurable, though. Slow down the rate of Rituxan infusion if you have a problem. Hopefully, you won't have a reaction as severe as mine (very rare) but, if you do, there is a regimen that will help. I'll get my second Rituxan infusion with that regimen tomorrow. You should have very little reaction to Bendamustine. You won't lose your hair.

Have you come across the International Waldenstrom Macroglobulinemia Foundation? http://www.iwmf.com/ Since you are 10 years from diagnosis I suppose you probably have.

There is a way to exchange emails. Click on the "Exchange Email" link near the top of the page. The software here removes all emails from posts due to various concerns. It's generally a bad idea to post your email in a public forum.

Hello and welcome, we are glad to have you with us. Here is a link to our cancer dx page for your type of cancer. Take a look at it to get you started on some information. You will notice at the bottom of that page 4 of our active users who have had that journey already, you may wish to contact them for their experience and wisdom. Also, any questions you may have just post them in the questions tab and everyone will see them there and be able to help you.

https://www.whatnext.com/conditions/cancer/non-hodgkin-lymphoma-nhl

There are also subtypes listed on this page to narrow down the type of cancer to match your dx.

Also, if you can take a few minutes and fill in some details of your journey so far, it will help others as they try to answer questions for you, it also helps others as they search through the data base to find someone like themselves. Confirming your email will allow you to receive updates and notices from the site when someone answers your questions or writes on your wall.

Thanks for being with us and let me know if I can help you find any information on the site. After you have an opportunity to look the site over and see what great things there are here, we encourage you to invite your friends, family or anyone you know that may be helped by the connections on WhatNext to join the site also. Just click this link to invite them to join. http://www.whatnext.com/recruit-a-friend

Greg P
3x survivor
Team WhatNext

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