Waldenstroms Macroglobulinemia

My mother was recently diagnosed with WM.  It took about a year before they came to this diagnosis.  A Coombs Neg. test had been done three different times twice by one doctor and the final time by a second Dr. the third time the test came back positive.  She has severe anemia and is today going through a third or forth transfusion these transfusions have been within the last year.  Yesterday she completed here forth Chemo treatment (rituxan).  Her spleen is very enlarged.  They have talked about a spleenectomey, but her blood counts are low and they have said they are concerned that her imune system is not strong enough.

 Does anyone know anything about these treatments? Or going through something similar?  I beleive my mother has been sick for many years  maybe even 5 or 6 years.  She is 65 years old.  I understand this is a very rare disease and even more rare in women.  The two doctors debated with each other as to if this was the right diagnosis. 

Would the red blood cell count go up during the rituxan treatment, or after?  She does not seem to be getting any better, if anything she is feeling worse.  How ever the side effects seem to be just an amplification of her current symptoms! 

Any info I would be grateful!!!!

Melissa

On 3/20/2008 Pray for Mom wrote:

My mother was recently diagnosed with WM.  It took about a year before they came to this diagnosis.  A Coombs Neg. test had been done three different times twice by one doctor and the final time by a second Dr. the third time the test came back positive.  She has severe anemia and is today going through a third or forth transfusion these transfusions have been within the last year.  Yesterday she completed here forth Chemo treatment (rituxan).  Her spleen is very enlarged.  They have talked about a spleenectomey, but her blood counts are low and they have said they are concerned that her imune system is not strong enough.

 Does anyone know anything about these treatments? Or going through something similar?  I beleive my mother has been sick for many years  maybe even 5 or 6 years.  She is 65 years old.  I understand this is a very rare disease and even more rare in women.  The two doctors debated with each other as to if this was the right diagnosis. 

Would the red blood cell count go up during the rituxan treatment, or after?  She does not seem to be getting any better, if anything she is feeling worse.  How ever the side effects seem to be just an amplification of her current symptoms! 

Any info I would be grateful!!!!

Melissa

I also have Waldenstroms and was treated with chop and retuxin for 6 months, I am a 50 year old female. I think I was also sick for years before I was diagnosed, I was very anemic....and my spleen was also very large.I finished my treatment in October and my bone marrow biopsy came back clean. It took me months to feel better, but now I am feeling great! ( it has been so nice to have energy again)

I start Retuxin maintenance again on April 15th but it is only for 4 weeks.

I will keep you and your Mom in my prayers, have faith. I call Retuxin a miracle drug! 

On 3/20/2008 Pray for Mom wrote:

My mother was recently diagnosed with WM.  It took about a year before they came to this diagnosis.  A Coombs Neg. test had been done three different times twice by one doctor and the final time by a second Dr. the third time the test came back positive.  She has severe anemia and is today going through a third or forth transfusion these transfusions have been within the last year.  Yesterday she completed here forth Chemo treatment (rituxan).  Her spleen is very enlarged.  They have talked about a spleenectomey, but her blood counts are low and they have said they are concerned that her imune system is not strong enough.

 Does anyone know anything about these treatments? Or going through something similar?  I beleive my mother has been sick for many years  maybe even 5 or 6 years.  She is 65 years old.  I understand this is a very rare disease and even more rare in women.  The two doctors debated with each other as to if this was the right diagnosis. 

Would the red blood cell count go up during the rituxan treatment, or after?  She does not seem to be getting any better, if anything she is feeling worse.  How ever the side effects seem to be just an amplification of her current symptoms! 

Any info I would be grateful!!!!

Melissa

Hi Melissa

My husband has WM was first diagnosed in 2005,but i think with hindsight had the illness for a long time became very ill in August 2006 with all the symptoms associated with Waldenstoms,ie tired Breathless,headaches,blurred vision bleeding gums lost weight saw a hematologist at our hospital he was excellent,and started treatment first he ha d about 3 plasma exchanges because his blood was so thick it was impossible to read it was like a instant fix he felt so much better,next he had fludarabine tablets for 3 month's did not work as well as expected the next step was a aggressive chemo therapy R CHOP the first to he tolerated very well ,he lost all his hair wasn't to happy about that worried that it would not come back,on the 3rd treatment he became very ill, his immunsystem crashed he got shingles ,kidney failure septicemia nearly lost him,but he recovered with all the care and specialist treatments he recieved today he is feeling fine and has regular blood test and see his consultant every 6 months all he is left with is postherpetic neuralgia from having shingles but his manged the pain with drugs and keeping busy your mum will get the condition under control and with the help of a good homotologist will learn to live as normal as possible with WM.good luck

Bruun

On 6/5/2008 Bruun wrote:

 

On 3/20/2008 Pray for Mom wrote:

My mother was recently diagnosed with WM.  It took about a year before they came to this diagnosis.  A Coombs Neg. test had been done three different times twice by one doctor and the final time by a second Dr. the third time the test came back positive.  She has severe anemia and is today going through a third or forth transfusion these transfusions have been within the last year.  Yesterday she completed here forth Chemo treatment (rituxan).  Her spleen is very enlarged.  They have talked about a spleenectomey, but her blood counts are low and they have said they are concerned that her imune system is not strong enough.

 Does anyone know anything about these treatments? Or going through something similar?  I beleive my mother has been sick for many years  maybe even 5 or 6 years.  She is 65 years old.  I understand this is a very rare disease and even more rare in women.  The two doctors debated with each other as to if this was the right diagnosis. 

Would the red blood cell count go up during the rituxan treatment, or after?  She does not seem to be getting any better, if anything she is feeling worse.  How ever the side effects seem to be just an amplification of her current symptoms! 

Any info I would be grateful!!!!

Melissa

Hi Melissa

My husband has WM was first diagnosed in 2005,but i think with hindsight had the illness for a long time became very ill in August 2006 with all the symptoms associated with Waldenstoms,ie tired Breathless,headaches,blurred vision bleeding gums lost weight saw a hematologist at our hospital he was excellent,and started treatment first he ha d about 3 plasma exchanges because his blood was so thick it was impossible to read it was like a instant fix he felt so much better,next he had fludarabine tablets for 3 month's did not work as well as expected the next step was a aggressive chemo therapy R CHOP the first to he tolerated very well ,he lost all his hair wasn't to happy about that worried that it would not come back,on the 3rd treatment he became very ill, his immunsystem crashed he got shingles ,kidney failure septicemia nearly lost him,but he recovered with all the care and specialist treatments he recieved today he is feeling fine and has regular blood test and see his consultant every 6 months all he is left with is postherpetic neuralgia from having shingles but his manged the pain with drugs and keeping busy your mum will get the condition under control and with the help of a good homotologist will learn to live as normal as possible with WM.good luck

Bruun