Chronic Lymphocytic Leukemia: Anyone else in remission?

I was treated twice with rituxan only for spleen related pain in 2016. I had frequent infections and mouth sores for 10 years prior to diagnosis in 2014. Heavy night sweats began late in 2013 and I had to cut back my work schedule to part time since early 2013. I was diagnosed as having CLL stage 2, but with some late stage features, including b-grade symptoms and low gamma globulin and very low immune globulin A, M and G. At time of diagnosis until after the first round of rituxan infusion, LDH very high, AST high and rising, frequently elevated granulocytes (neutrophils, basophils, eosinophils and immature granulocytes), monocytes almost always high. Hemoglobin ranged from 11s to about 13. First set of infusions reduced size of spleen. above the diaphragm lymph nodes much reduced after 2nd infusion compared to CT taken before 1st infusion. There was a huge improvement in symptoms after the 2nd set of infusions. No sino-respiratory infections requiring antibiotics and no antibiotics ordered for almost 6 months, night sweats very infrequent and lighter. Worsening symptoms since March 2017, more frequent and heavier night sweats, increased fatigue, infections requiring antibiotics every 6 to 8 weeks, etc. I switched care from a cancer care clinic in Minneapolis to Mayo in Rochester in late 2016. Because of worsening symptoms, I am planning to start ibrutinib very soon. The first hematologist assigned to me remarked that I had an early stage CLL with some late stage features, but insisted that the b-grade symptoms and low immuneglobulins couldn't be CLL related, because you don't see that in stage 2. The low immuneglobulins were attributed to a very rare genetic disorder, Common Variable Immune Defienciency, not secondary to CLL. What about LDH, AST and white blood counts. Apparently attributed to alcoholism. I had reported light and infrequent consumption of ETOH, but so do alcoholics. But LDH and AST dropped to low-normal levels, white counts normalized after the rituxan treatment.

Hello
As of January 29 my hemoglobin and platelets are below the normal low, I went for a second opinion with a CLL specialist at Froedtert in Milwaukee. If my numbers continue to lower he said I will need to start treatment....FCR for 6 months or Ibrutinib 3x a day forever. Does anyone have any thoughts, pros or cons of the two treatments?

Hello
As of January 29 my hemoglobin and platelets are below the normal low, I went for a second opinion with a CLL specialist at Froedtert in Milwaukee. If my numbers continue to lower he said I will need to start treatment....FCR for 6 months or Ibrutinib 3x a day forever. Does anyone have any thoughts, pros or cons of the two treatments?

I was treated twice with rituxan only for spleen related pain in 2016. I had frequent infections and mouth sores for 10 years prior to diagnosis in 2014. Heavy night sweats began late in 2013 and I had to cut back my work schedule to part time since early 2013. I was diagnosed as having CLL stage 2, but with some late stage features, including b-grade symptoms and low gamma globulin and very low immune globulin A, M and G. At time of diagnosis until after the first round of rituxan infusion, LDH very high, AST high and rising, frequently elevated granulocytes (neutrophils, basophils, eosinophils and immature granulocytes), monocytes almost always high. Hemoglobin ranged from 11s to about 13. First set of infusions reduced size of spleen. above the diaphragm lymph nodes much reduced after 2nd infusion compared to CT taken before 1st infusion. There was a huge improvement in symptoms after the 2nd set of infusions. No sino-respiratory infections requiring antibiotics and no antibiotics ordered for almost 6 months, night sweats very infrequent and lighter. Worsening symptoms since March 2017, more frequent and heavier night sweats, increased fatigue, infections requiring antibiotics every 6 to 8 weeks, etc. I switched care from a cancer care clinic in Minneapolis to Mayo in Rochester in late 2016. Because of worsening symptoms, I am planning to start ibrutinib very soon. The first hematologist assigned to me remarked that I had an early stage CLL with some late stage features, but insisted that the b-grade symptoms and low immuneglobulins couldn't be CLL related, because you don't see that in stage 2. The low immuneglobulins were attributed to a very rare genetic disorder, Common Variable Immune Defienciency, not secondary to CLL. What about LDH, AST and white blood counts. Apparently attributed to alcoholism. I had reported light and infrequent consumption of ETOH, but so do alcoholics. But LDH and AST dropped to low-normal levels, white counts normalized after the rituxan treatment.

Hi Adriano; I have CLL too and my last treatment was last May through October; I'm in remission for now; how are you? and are you having issues staying healthy with your immune system? I need advice on how to rebuild mine; I keep getting sick; and my name is Mary.