T-cell LGL Leukemia

I read some of the messages from some of the people with the same type of Leukemia as my husband has.  He is 59 and has been ill since 2003,He was first diagnoised with rocky mountain spotted tick fever which triggered Rheumotoid artharitis It has been 5 yrs of fatigue, infections. low lymphocites and neutrifils fevers chills ect.  At first they treated him with methotrexate and then when his blood count dropped, neupergen shots were added. they worked well at first only requiring shots about every 3 or 4 months but as time went on we were down to shots every week or so. His condition was getting much worse.  Our Hemotolagist reccommended that we go to Mayo Clinic for further testing , he had a pretty good idea of what was going on.  but we were unable to get a correct diag. where we lived.  In Sept.2008 we traveled from arkansas to mennsota to Mayo Clinic.  It was the best decision we ever made.  It took 24 hours for them to confirm the diag. of T-Cell Large Granular Lymphocytic Leukemia (very rare)  even for a place like mayo.  It was suggested that it be treated with methotrexate and cyclosporine.  It has now been almost 6 months and our Doctor chose to treat him only with the cyclosporine.  After a month on the medicine his blood work was better than it had been for 5 yrs.  No infections,much more energy,  Our Blood work today 1-29-09 was all normal.  We know there is no cure, but god has blessed us with some breathing room.  We are looking forward to camping and fishing season.   Would like to hear from other simular cases. 

  God Bless !!                  

w

On 1/29/2009 bob2bill wrote:

I read some of the messages from some of the people with the same type of Leukemia as my husband has.  He is 59 and has been ill since 2003,He was first diagnoised with rocky mountain spotted tick fever which triggered Rheumotoid artharitis It has been 5 yrs of fatigue, infections. low lymphocites and neutrifils fevers chills ect.  At first they treated him with methotrexate and then when his blood count dropped, neupergen shots were added. they worked well at first only requiring shots about every 3 or 4 months but as time went on we were down to shots every week or so. His condition was getting much worse.  Our Hemotolagist reccommended that we go to Mayo Clinic for further testing , he had a pretty good idea of what was going on.  but we were unable to get a correct diag. where we lived.  In Sept.2008 we traveled from arkansas to mennsota to Mayo Clinic.  It was the best decision we ever made.  It took 24 hours for them to confirm the diag. of T-Cell Large Granular Lymphocytic Leukemia (very rare)  even for a place like mayo.  It was suggested that it be treated with methotrexate and cyclosporine.  It has now been almost 6 months and our Doctor chose to treat him only with the cyclosporine.  After a month on the medicine his blood work was better than it had been for 5 yrs.  No infections,much more energy,  Our Blood work today 1-29-09 was all normal.  We know there is no cure, but god has blessed us with some breathing room.  We are looking forward to camping and fishing season.   Would like to hear from other simular cases. 

  God Bless !!                  

w

I have  just been diagnosed with Large granular lymphotic leukemia. In Feb Ihad a rountine blood test and my white cell infection fighting cells were 0. should be1500 to 2000. The dr.took me off of plaquenell that I took for RA.. Did not help. Had bone marrow test and lots of blood tests, the went an had an iv of gamma globulin that took 8 hours.  It brought it up to 700. So he gave me a shot of pegogen not spelled right, went bak in a week and it had come from 700 dwn to 400.  Now I am on cyclosporine and cytoxan.  I go b ack in 3 weeks to see if this brings my white fighters up.  I have felt fine and had no symptoms, if not for the routing blood test I would not know anythng was wrong....but they tel me I cnanot have zero white infection fighting cells or I will end up sick

 I went thru shock , and fear at the bone marrow test, and now also at these drugs that read like they can cause all kinds of things.. If my count does not come up in3 weeks, I am going to scream.

  thank you for listening

On 1/29/2009 bob2bill wrote:

I read some of the messages from some of the people with the same type of Leukemia as my husband has.  He is 59 and has been ill since 2003,He was first diagnoised with rocky mountain spotted tick fever which triggered Rheumotoid artharitis It has been 5 yrs of fatigue, infections. low lymphocites and neutrifils fevers chills ect.  At first they treated him with methotrexate and then when his blood count dropped, neupergen shots were added. they worked well at first only requiring shots about every 3 or 4 months but as time went on we were down to shots every week or so. His condition was getting much worse.  Our Hemotolagist reccommended that we go to Mayo Clinic for further testing , he had a pretty good idea of what was going on.  but we were unable to get a correct diag. where we lived.  In Sept.2008 we traveled from arkansas to mennsota to Mayo Clinic.  It was the best decision we ever made.  It took 24 hours for them to confirm the diag. of T-Cell Large Granular Lymphocytic Leukemia (very rare)  even for a place like mayo.  It was suggested that it be treated with methotrexate and cyclosporine.  It has now been almost 6 months and our Doctor chose to treat him only with the cyclosporine.  After a month on the medicine his blood work was better than it had been for 5 yrs.  No infections,much more energy,  Our Blood work today 1-29-09 was all normal.  We know there is no cure, but god has blessed us with some breathing room.  We are looking forward to camping and fishing season.   Would like to hear from other simular cases. 

  God Bless !!                  

w

I was diagnosed with LGL in 2000. I caught a cold that became much worse than it should have been. The clinic had been telling me I was anemic for several years and giving me diet sheets. I finally became so sick with the cold I went back in and  yelled. The doctor noted the anemia and decided to do further tests. 4 days later I was in Oncology. Stanford confimed the diagnosis a couple of weeks later and told me I had had the LGL for approximately 4yrs. I am 61 now and have had it for 13 yrs.

 So far I have been really lucky. No treatment for the LGL, but infections can be a real problem. I avoid crowded places and wash my hands a lot!

I try to keep the stress  down and get a lot of rest. If I get overtired I seem to be more prone to catching something. Eating a balanced diet is also important.

God bless and good luck.
P