Waldenstrom's Macroglobulnemia Lymphoma - Non Hodgkin's Lym...

Non Hodgkin's Lymphoma Friends

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Waldenstrom's Macroglobulnemia Lymphoma

THWM2015 profile image

Hello, Thank you for adding me to the group. I am wondering if anyone else has Waldenstrom's Macroglobulnemia Lymphoma?

13 Replies

Hi THWm I don't have waldenstroms but my mother does What had your experience been?

Shar0n profile image
Shar0nVolunteer

Welcome to NHL Friends, THWM2015. I hope you find some information and support here. I have Follicular Lymphoma since 2014, still on watch and wait.

Haha not so fast. I replied to you already saying I did not have WALDENSTROHMS though my mother does. After extensive pathology scrutiny they just told me today it is in fact WALDENSTROHMS and not nodal marginal zone. I am starting prednisone today and IV rituximab on Tuesday morning. It feels great to be heading into treatment, to have had a great medical team clarify things for me and to hear so frequently that it is eminently treatable!

THWM2015 profile image
THWM2015 in reply to Glenmeadow

You should join the Waldenstrom's Macroglobulnemia sight on FB. It will help you understand so many things and is very informative. You should also go to the IWMF for more information. I'll keep her in my prayers.

Glenmeadow profile image
Glenmeadow in reply to THWM2015

Awesome idea just indicated my request to join. Thanks!

Hi THWM2015.

I was diagnosed in June 16. I have had treatment . I feel really good and did not have any problems with the chemo in tablet form. Just slight reaction to the ritual. I have my three month check in March.

Meant the Rituximab!

Am waiting to find out if mine is the same. Right now doc said I have 70-80 percent cancer in bone marrow but he is very optimistic with my chemo I hate all the waiting!

I agree the waiting is sooooo trying.

Hello, I became very sick on 2014. I'm on watch and wait. Bone marrow at 78%. Very, very tired and very painful in my flank and hip area. Vision changes often and have stomach issues. I was falling but that is better. Seems like it comes in waves. I'm 57. I hope your mother is doing alright? There's not a lot we can do at this point. Glenmeadow

I would question my doctor about being on watch and wait if you are so symptomatic! Bone marrow involvement is one of the stated reasons to begin treating Waldenstroms I believe. And thanks for asking about my mom she is 85 and has plenty of M protein but no other symptoms.

I have Waldenstrom's and have had since 1991.

Sue

Hi my fiancé has waldenstrom since 2008 the chemo was not good for him so in 2014 they put himm on Ibrutinib. this really save him . He felt great and besides iron infusions for low iron everything was going well. but his dr. would like to take him off of it now . so the past month he has been miserable. she has tried to take him off before and seems to experience the same problems. Abdominal pain, some headaches and extreme fatique. has anyone else these problems. there seems to be no information on withdrawing from this med . His dr. insisted the withdrawal is not the problem even tried to tell him once it could be phyco simatic . Any just wondered it anyone else experienced these problems .

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