Waldenstroms

[deestb]

Wondering if anyone has Waldenstroms macroglobulinimia a form of NHL..There is a Candian foundation for people with this form of cancer...It is very rare....

[Glenmeadow]

Yes I have WM and so does my mother. I am newly diagnosed with bunch of lymph nodes and 30% bone marrow infiltration. They are treating it even though my m protein is barely above normal because of the profound anemia and transfusion dependence. Just had four weekly infusions of rituxan and I'm starting oral Imbruvica today. Great Facebook community for WM as well. Where are you on this journey?

[deestb in reply to Glenmeadow]

Watch and wait....was originally diagnosed as MGUS....had numerous fractures with elevated protein....seeing onco 2 times /year....but this lates spike with light chain lambda was concerning 474 normal is 3-26 but no call from onco...the basic blood tests have been good surprisingly ..but the electrophoris results have been concerning.. my onco said the light chain chain lambda have to be 1000 before treatments....I am "lucky" apparantly .... no nodes and no enlarged spleen...next onco appt in April....I have noticed that I was reallly run down this winter ..had the flu shot but for two months felt dragged out....more fatigue than usual... I am so grateful for this site....hope you are having a "good day" today....thank you ..!!

[Glenmeadow in reply to deestb]

The fatigue is my biggest complaint! Do t hesitate to get a 2nd opinion. I do t have any spleeni involvement either. I had 4 diagnoses In Four months (mgus, myelodysplastic syndrome, nodal marginal Zone lymphoma and finally Waldenstroms. ). Three completely different courses of treatment were prescribed for WM so confusing! I went with the one that would be easiest on my body S I am already so exhausted: rituxan followed by imbruvica

[deestb in reply to Glenmeadow]

I actually went to my GP and he agrees I need another opinion..so am hoping to get into Vancouver ...just can't figure out why no scans in 2 1/2 yrs MGUS was a worry as it can lead to multiply myeloma that was on my roster but now it's not their concern...so a second opinion is hopefully in the works....I am sorry you are so exhausted I am fatigued but with watch and wait there is no treatment until patients get really "sick"

[Glenmeadow in reply to deestb]

They did blood work on me called an SPEP which revealed some minimal issues but still not normal. Then did a pet scan expecting nothing and boom! Lymph nodes everywhere. Insist on the detailed blood work the combined ct/pet scan And a bone marrow biopsy with flow cytometry and cytogenetic analysis. Then you will know exactly what you are dealing with

[deestb]

I meant multiple myeloma oops .....lots on our WM minds its boggling ...

[AnneNewman]

Hi deestb and Glenmeadow - my husband was originally diagnosed with WM in February 2008. He lived on watch & wait till Feb. 2009 when he started chemo with 3 cycles of R-CVP and then 6 cycles of R-CHOP. Maintenance rituxan 3 month cycles finished July 2011. He has been monitored every 3 months since and is now edging close to retreatment as his serum IgM level is high again. He has full marrow involvement, but no tumours and at last CT spleen was clear.

Sadly, one of the CHOP drugs caused a serious aggressive colorectal cancer in the summer of 2013. He had 15 cms of colon and 12 lymph nodes removed - thankfully has been clear since - 1 year post op was good, FOBT and now waiting for the next colonoscopy to investigate if he is still good.

He struggles with fatigue and has a reduced immune since the chemo, so we have to be careful about infections. Hoping for oral meds next time but the province does not cover relapsed patients in Ontario, Canada.

[deestb in reply to AnneNewman]

Your husband is a trooper ...has managed to get through years of treatments and ups and downs...i can't imagine how that is.

....I am on watch and wait ..no treatments since being diagnosed at age 70 in 2014... I have an appt in Vancouver at the BC Cancer center soon...it will be a second opinion...

am currently in the Alberta system because of living only 40 min from the Alberta border...

..Our medical used to be Pacific Blue Cross which was excellent but our retirement coverage (with no input from the clients ) was switched to Green Shield.....we are very concerned about this as it's based in Ontario...I hope something works out for you to get coverage....

A few years ago there was an education forum in Calgary...in which good information was shared....The representative from WM Canada is a good source

Maybe she could find out or knows about coverage for your husbands drugs..

Keep us posted....Hope your husband has lots of good days...(you too)!!