CLL - newly diagnosed

I was diagnosed with CLL, stage 2 in May 2014, accompanied by very frequent infections requiring antibiotics (more or less once per month), drenching night sweats, painful chancre sores in my mouth, hypogammaglobulinemia with low immuneglobulin A, G and M, and very high Lactic Acid Dehydrogenase levels, high and rising AST levels, persistent monocytosis, and frequently elevated granulocytes and immature granulocytes, I had been unable to work more than a part time schedule (about 24 hours per week) since early 2013 because of hypertensive episodes that occurred when I worked more than that. I have some other chronic illness in addition to CLL/SLL, such as hypothyroidism, early stage diabetes, and history of cardiac ischemia prior to treatment for hypothyroidism, COPD and bronchiectasis. I was told that I had a good cancer and would not need treatment for many years. I was eligible for treatment under International workshop guidelines for diagnosis and treatment of CLL, but I wasn't offered treatment until April 2016 when I complained of severe upper left quadrent abdominal pain.

Rituxan was prescribed as a single agent, 4 infusions in April 2016 and 4 infusions in July-August 2016. The first round of rituxan infusions greatly reduced the abdominal pain, normalized most of the lab results that had been out of whack, reduced the size of my spleen, and eliminated intense back pain which I had long assumed to be related to spinal degeneration. However, the night sweats, mouth sores and frequent infections continued. About 6 to 7 weeks after completing the 4th infusion I had a flair-up of abdominal pain plus severe pleurisy-like pain, which peaked in a bout 10 days and then gradually diminished. A second round of rituxan infusions nearly eliminated the abdominal and pleurisy like pain, which flaired up in about 7 weeks, peaked and then subsided and disappeared. Night sweats became infrequent and less heavy, and ceased to happen for a couple of months, then resumed, sometimes nightly for a week or two, then not at all for as much as a week. I required no antibiotics for over months. I also discontinued IVIG in October 2016 because of out-of-pocket costs and the very small benefit that I had gotten from it. My next infection requiring antibiotics was in March 2017, and I've since had infections requiring antibiotics at 6 week intervals. so far this year, mouth sores have generally come and gone within a few days, are not very painful, only once progressing to a full blown chancre sore.

I went to Mayo Clinic for a second opinion in August 2016 and transferred care to Mayo Clinic because the CLL specialist I consulted with stated that he follows International Workshop guidelines. The plan is to begin treatment soon, possibly with ibrutinib. I don't want to do any chemotherapy agents. By themselves, the chemotherapy agents did not have a very good track record.

I am not displeased with the results of Rituxan as a single agent. I had no adverse reactions to Rituxan during and between infusions. In addition a reduction of more than 25% in a 3-measure index of spleen volume, there were substancial reduction in all enlarged, above-the-diaphragm lymph nodes. Immuneglobulin A levels drawn about 6 months before the first round of rituxan and 9 months after the 2nd round increased a little, from 25 to 27. Between 2005 and 2014, immuneglobulin A levels had dropped an average of 9 points per years, and continued to drop at that rate between May 2014 and November 2015. So a small increase in something. IgG levels had dropped from 925 in 2005 to 402 in May 2014, about 60 per year, but declined by only 44 points in the next 3 years (at 358). IVIG infusions made it impossible to determine levels of endogenous IgG levels in November 2015. It has been reported with ibrutinib that immunoglobulin A levels have increased with some patients. If you kill cancer cells without significant toxicity for pleuripotent hemopoietic stem cells and non-cancerous b-cells, then there is hope that ibrutinib can help to improve b-cell function (immunoglobulin production).

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I was diagnosed with CLL, stage 2 in May 2014, accompanied by very frequent infections requiring antibiotics (more or less once per month), drenching night sweats, painful chancre sores in my mouth, hypogammaglobulinemia with low immuneglobulin A, G and M, and very high Lactic Acid Dehydrogenase levels, high and rising AST levels, persistent monocytosis, and frequently elevated granulocytes and immature granulocytes, I had been unable to work more than a part time schedule (about 24 hours per week) since early 2013 because of hypertensive episodes that occurred when I worked more than that. I have some other chronic illness in addition to CLL/SLL, such as hypothyroidism, early stage diabetes, and history of cardiac ischemia prior to treatment for hypothyroidism, COPD and bronchiectasis. I was told that I had a good cancer and would not need treatment for many years. I was eligible for treatment under International workshop guidelines for diagnosis and treatment of CLL, but I wasn't offered treatment until April 2016 when I complained of severe upper left quadrent abdominal pain.

Rituxan was prescribed as a single agent, 4 infusions in April 2016 and 4 infusions in July-August 2016. The first round of rituxan infusions greatly reduced the abdominal pain, normalized most of the lab results that had been out of whack, reduced the size of my spleen, and eliminated intense back pain which I had long assumed to be related to spinal degeneration. However, the night sweats, mouth sores and frequent infections continued. About 6 to 7 weeks after completing the 4th infusion I had a flair-up of abdominal pain plus severe pleurisy-like pain, which peaked in a bout 10 days and then gradually diminished. A second round of rituxan infusions nearly eliminated the abdominal and pleurisy like pain, which flaired up in about 7 weeks, peaked and then subsided and disappeared. Night sweats became infrequent and less heavy, and ceased to happen for a couple of months, then resumed, sometimes nightly for a week or two, then not at all for as much as a week. I required no antibiotics for over months. I also discontinued IVIG in October 2016 because of out-of-pocket costs and the very small benefit that I had gotten from it. My next infection requiring antibiotics was in March 2017, and I've since had infections requiring antibiotics at 6 week intervals. so far this year, mouth sores have generally come and gone within a few days, are not very painful, only once progressing to a full blown chancre sore.

I went to Mayo Clinic for a second opinion in August 2016 and transferred care to Mayo Clinic because the CLL specialist I consulted with stated that he follows International Workshop guidelines. The plan is to begin treatment soon, possibly with ibrutinib. I don't want to do any chemotherapy agents. By themselves, the chemotherapy agents did not have a very good track record.

I am not displeased with the results of Rituxan as a single agent. I had no adverse reactions to Rituxan during and between infusions. In addition a reduction of more than 25% in a 3-measure index of spleen volume, there were substancial reduction in all enlarged, above-the-diaphragm lymph nodes. Immuneglobulin A levels drawn about 6 months before the first round of rituxan and 9 months after the 2nd round increased a little, from 25 to 27. Between 2005 and 2014, immuneglobulin A levels had dropped an average of 9 points per years, and continued to drop at that rate between May 2014 and November 2015. So a small increase in something. IgG levels had dropped from 925 in 2005 to 402 in May 2014, about 60 per year, but declined by only 44 points in the next 3 years (at 358). IVIG infusions made it impossible to determine levels of endogenous IgG levels in November 2015. It has been reported with ibrutinib that immunoglobulin A levels have increased with some patients. If you kill cancer cells without significant toxicity for pleuripotent hemopoietic stem cells and non-cancerous b-cells, then there is hope that ibrutinib can help to improve b-cell function (immunoglobulin production).

Jump to this post

I was diagnosed with CLL, stage 2 in May 2014, accompanied by very frequent infections requiring antibiotics (more or less once per month), drenching night sweats, painful chancre sores in my mouth, hypogammaglobulinemia with low immuneglobulin A, G and M, and very high Lactic Acid Dehydrogenase levels, high and rising AST levels, persistent monocytosis, and frequently elevated granulocytes and immature granulocytes, I had been unable to work more than a part time schedule (about 24 hours per week) since early 2013 because of hypertensive episodes that occurred when I worked more than that. I have some other chronic illness in addition to CLL/SLL, such as hypothyroidism, early stage diabetes, and history of cardiac ischemia prior to treatment for hypothyroidism, COPD and bronchiectasis. I was told that I had a good cancer and would not need treatment for many years. I was eligible for treatment under International workshop guidelines for diagnosis and treatment of CLL, but I wasn't offered treatment until April 2016 when I complained of severe upper left quadrent abdominal pain.

Rituxan was prescribed as a single agent, 4 infusions in April 2016 and 4 infusions in July-August 2016. The first round of rituxan infusions greatly reduced the abdominal pain, normalized most of the lab results that had been out of whack, reduced the size of my spleen, and eliminated intense back pain which I had long assumed to be related to spinal degeneration. However, the night sweats, mouth sores and frequent infections continued. About 6 to 7 weeks after completing the 4th infusion I had a flair-up of abdominal pain plus severe pleurisy-like pain, which peaked in a bout 10 days and then gradually diminished. A second round of rituxan infusions nearly eliminated the abdominal and pleurisy like pain, which flaired up in about 7 weeks, peaked and then subsided and disappeared. Night sweats became infrequent and less heavy, and ceased to happen for a couple of months, then resumed, sometimes nightly for a week or two, then not at all for as much as a week. I required no antibiotics for over months. I also discontinued IVIG in October 2016 because of out-of-pocket costs and the very small benefit that I had gotten from it. My next infection requiring antibiotics was in March 2017, and I've since had infections requiring antibiotics at 6 week intervals. so far this year, mouth sores have generally come and gone within a few days, are not very painful, only once progressing to a full blown chancre sore.

I went to Mayo Clinic for a second opinion in August 2016 and transferred care to Mayo Clinic because the CLL specialist I consulted with stated that he follows International Workshop guidelines. The plan is to begin treatment soon, possibly with ibrutinib. I don't want to do any chemotherapy agents. By themselves, the chemotherapy agents did not have a very good track record.

I am not displeased with the results of Rituxan as a single agent. I had no adverse reactions to Rituxan during and between infusions. In addition a reduction of more than 25% in a 3-measure index of spleen volume, there were substancial reduction in all enlarged, above-the-diaphragm lymph nodes. Immuneglobulin A levels drawn about 6 months before the first round of rituxan and 9 months after the 2nd round increased a little, from 25 to 27. Between 2005 and 2014, immuneglobulin A levels had dropped an average of 9 points per years, and continued to drop at that rate between May 2014 and November 2015. So a small increase in something. IgG levels had dropped from 925 in 2005 to 402 in May 2014, about 60 per year, but declined by only 44 points in the next 3 years (at 358). IVIG infusions made it impossible to determine levels of endogenous IgG levels in November 2015. It has been reported with ibrutinib that immunoglobulin A levels have increased with some patients. If you kill cancer cells without significant toxicity for pleuripotent hemopoietic stem cells and non-cancerous b-cells, then there is hope that ibrutinib can help to improve b-cell function (immunoglobulin production).

Jump to this post

I was diagnosed with CLL, stage 2 in May 2014, accompanied by very frequent infections requiring antibiotics (more or less once per month), drenching night sweats, painful chancre sores in my mouth, hypogammaglobulinemia with low immuneglobulin A, G and M, and very high Lactic Acid Dehydrogenase levels, high and rising AST levels, persistent monocytosis, and frequently elevated granulocytes and immature granulocytes, I had been unable to work more than a part time schedule (about 24 hours per week) since early 2013 because of hypertensive episodes that occurred when I worked more than that. I have some other chronic illness in addition to CLL/SLL, such as hypothyroidism, early stage diabetes, and history of cardiac ischemia prior to treatment for hypothyroidism, COPD and bronchiectasis. I was told that I had a good cancer and would not need treatment for many years. I was eligible for treatment under International workshop guidelines for diagnosis and treatment of CLL, but I wasn't offered treatment until April 2016 when I complained of severe upper left quadrent abdominal pain.

Rituxan was prescribed as a single agent, 4 infusions in April 2016 and 4 infusions in July-August 2016. The first round of rituxan infusions greatly reduced the abdominal pain, normalized most of the lab results that had been out of whack, reduced the size of my spleen, and eliminated intense back pain which I had long assumed to be related to spinal degeneration. However, the night sweats, mouth sores and frequent infections continued. About 6 to 7 weeks after completing the 4th infusion I had a flair-up of abdominal pain plus severe pleurisy-like pain, which peaked in a bout 10 days and then gradually diminished. A second round of rituxan infusions nearly eliminated the abdominal and pleurisy like pain, which flaired up in about 7 weeks, peaked and then subsided and disappeared. Night sweats became infrequent and less heavy, and ceased to happen for a couple of months, then resumed, sometimes nightly for a week or two, then not at all for as much as a week. I required no antibiotics for over months. I also discontinued IVIG in October 2016 because of out-of-pocket costs and the very small benefit that I had gotten from it. My next infection requiring antibiotics was in March 2017, and I've since had infections requiring antibiotics at 6 week intervals. so far this year, mouth sores have generally come and gone within a few days, are not very painful, only once progressing to a full blown chancre sore.

I went to Mayo Clinic for a second opinion in August 2016 and transferred care to Mayo Clinic because the CLL specialist I consulted with stated that he follows International Workshop guidelines. The plan is to begin treatment soon, possibly with ibrutinib. I don't want to do any chemotherapy agents. By themselves, the chemotherapy agents did not have a very good track record.

I am not displeased with the results of Rituxan as a single agent. I had no adverse reactions to Rituxan during and between infusions. In addition a reduction of more than 25% in a 3-measure index of spleen volume, there were substancial reduction in all enlarged, above-the-diaphragm lymph nodes. Immuneglobulin A levels drawn about 6 months before the first round of rituxan and 9 months after the 2nd round increased a little, from 25 to 27. Between 2005 and 2014, immuneglobulin A levels had dropped an average of 9 points per years, and continued to drop at that rate between May 2014 and November 2015. So a small increase in something. IgG levels had dropped from 925 in 2005 to 402 in May 2014, about 60 per year, but declined by only 44 points in the next 3 years (at 358). IVIG infusions made it impossible to determine levels of endogenous IgG levels in November 2015. It has been reported with ibrutinib that immunoglobulin A levels have increased with some patients. If you kill cancer cells without significant toxicity for pleuripotent hemopoietic stem cells and non-cancerous b-cells, then there is hope that ibrutinib can help to improve b-cell function (immunoglobulin production).

Jump to this post

I was diagnosed with CLL, stage 2 in May 2014, accompanied by very frequent infections requiring antibiotics (more or less once per month), drenching night sweats, painful chancre sores in my mouth, hypogammaglobulinemia with low immuneglobulin A, G and M, and very high Lactic Acid Dehydrogenase levels, high and rising AST levels, persistent monocytosis, and frequently elevated granulocytes and immature granulocytes, I had been unable to work more than a part time schedule (about 24 hours per week) since early 2013 because of hypertensive episodes that occurred when I worked more than that. I have some other chronic illness in addition to CLL/SLL, such as hypothyroidism, early stage diabetes, and history of cardiac ischemia prior to treatment for hypothyroidism, COPD and bronchiectasis. I was told that I had a good cancer and would not need treatment for many years. I was eligible for treatment under International workshop guidelines for diagnosis and treatment of CLL, but I wasn't offered treatment until April 2016 when I complained of severe upper left quadrent abdominal pain.

Rituxan was prescribed as a single agent, 4 infusions in April 2016 and 4 infusions in July-August 2016. The first round of rituxan infusions greatly reduced the abdominal pain, normalized most of the lab results that had been out of whack, reduced the size of my spleen, and eliminated intense back pain which I had long assumed to be related to spinal degeneration. However, the night sweats, mouth sores and frequent infections continued. About 6 to 7 weeks after completing the 4th infusion I had a flair-up of abdominal pain plus severe pleurisy-like pain, which peaked in a bout 10 days and then gradually diminished. A second round of rituxan infusions nearly eliminated the abdominal and pleurisy like pain, which flaired up in about 7 weeks, peaked and then subsided and disappeared. Night sweats became infrequent and less heavy, and ceased to happen for a couple of months, then resumed, sometimes nightly for a week or two, then not at all for as much as a week. I required no antibiotics for over months. I also discontinued IVIG in October 2016 because of out-of-pocket costs and the very small benefit that I had gotten from it. My next infection requiring antibiotics was in March 2017, and I've since had infections requiring antibiotics at 6 week intervals. so far this year, mouth sores have generally come and gone within a few days, are not very painful, only once progressing to a full blown chancre sore.

I went to Mayo Clinic for a second opinion in August 2016 and transferred care to Mayo Clinic because the CLL specialist I consulted with stated that he follows International Workshop guidelines. The plan is to begin treatment soon, possibly with ibrutinib. I don't want to do any chemotherapy agents. By themselves, the chemotherapy agents did not have a very good track record.

I am not displeased with the results of Rituxan as a single agent. I had no adverse reactions to Rituxan during and between infusions. In addition a reduction of more than 25% in a 3-measure index of spleen volume, there were substancial reduction in all enlarged, above-the-diaphragm lymph nodes. Immuneglobulin A levels drawn about 6 months before the first round of rituxan and 9 months after the 2nd round increased a little, from 25 to 27. Between 2005 and 2014, immuneglobulin A levels had dropped an average of 9 points per years, and continued to drop at that rate between May 2014 and November 2015. So a small increase in something. IgG levels had dropped from 925 in 2005 to 402 in May 2014, about 60 per year, but declined by only 44 points in the next 3 years (at 358). IVIG infusions made it impossible to determine levels of endogenous IgG levels in November 2015. It has been reported with ibrutinib that immunoglobulin A levels have increased with some patients. If you kill cancer cells without significant toxicity for pleuripotent hemopoietic stem cells and non-cancerous b-cells, then there is hope that ibrutinib can help to improve b-cell function (immunoglobulin production).

Jump to this post

I was diagnosed with CLL, stage 2 in May 2014, accompanied by very frequent infections requiring antibiotics (more or less once per month), drenching night sweats, painful chancre sores in my mouth, hypogammaglobulinemia with low immuneglobulin A, G and M, and very high Lactic Acid Dehydrogenase levels, high and rising AST levels, persistent monocytosis, and frequently elevated granulocytes and immature granulocytes, I had been unable to work more than a part time schedule (about 24 hours per week) since early 2013 because of hypertensive episodes that occurred when I worked more than that. I have some other chronic illness in addition to CLL/SLL, such as hypothyroidism, early stage diabetes, and history of cardiac ischemia prior to treatment for hypothyroidism, COPD and bronchiectasis. I was told that I had a good cancer and would not need treatment for many years. I was eligible for treatment under International workshop guidelines for diagnosis and treatment of CLL, but I wasn't offered treatment until April 2016 when I complained of severe upper left quadrent abdominal pain.

Rituxan was prescribed as a single agent, 4 infusions in April 2016 and 4 infusions in July-August 2016. The first round of rituxan infusions greatly reduced the abdominal pain, normalized most of the lab results that had been out of whack, reduced the size of my spleen, and eliminated intense back pain which I had long assumed to be related to spinal degeneration. However, the night sweats, mouth sores and frequent infections continued. About 6 to 7 weeks after completing the 4th infusion I had a flair-up of abdominal pain plus severe pleurisy-like pain, which peaked in a bout 10 days and then gradually diminished. A second round of rituxan infusions nearly eliminated the abdominal and pleurisy like pain, which flaired up in about 7 weeks, peaked and then subsided and disappeared. Night sweats became infrequent and less heavy, and ceased to happen for a couple of months, then resumed, sometimes nightly for a week or two, then not at all for as much as a week. I required no antibiotics for over months. I also discontinued IVIG in October 2016 because of out-of-pocket costs and the very small benefit that I had gotten from it. My next infection requiring antibiotics was in March 2017, and I've since had infections requiring antibiotics at 6 week intervals. so far this year, mouth sores have generally come and gone within a few days, are not very painful, only once progressing to a full blown chancre sore.

I went to Mayo Clinic for a second opinion in August 2016 and transferred care to Mayo Clinic because the CLL specialist I consulted with stated that he follows International Workshop guidelines. The plan is to begin treatment soon, possibly with ibrutinib. I don't want to do any chemotherapy agents. By themselves, the chemotherapy agents did not have a very good track record.

I am not displeased with the results of Rituxan as a single agent. I had no adverse reactions to Rituxan during and between infusions. In addition a reduction of more than 25% in a 3-measure index of spleen volume, there were substancial reduction in all enlarged, above-the-diaphragm lymph nodes. Immuneglobulin A levels drawn about 6 months before the first round of rituxan and 9 months after the 2nd round increased a little, from 25 to 27. Between 2005 and 2014, immuneglobulin A levels had dropped an average of 9 points per years, and continued to drop at that rate between May 2014 and November 2015. So a small increase in something. IgG levels had dropped from 925 in 2005 to 402 in May 2014, about 60 per year, but declined by only 44 points in the next 3 years (at 358). IVIG infusions made it impossible to determine levels of endogenous IgG levels in November 2015. It has been reported with ibrutinib that immunoglobulin A levels have increased with some patients. If you kill cancer cells without significant toxicity for pleuripotent hemopoietic stem cells and non-cancerous b-cells, then there is hope that ibrutinib can help to improve b-cell function (immunoglobulin production).

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Hi, I was diagnosed in 2013 with CLL. I am now 57 years old and this past year my WBC has risen to 31,000 along with smudge cells and most recently a few clefted lymphocytes (which I haven't googled the meaning of as of yet bc I tend to get a bit freaked out). I will be honest this diagnosis has affected me emotionally, I watched my father battle Non Hodgkin's lymphoma for 10 years and my younger sister, who is now 15 years remission.
I am curious if anyone has made any health changes as far as their diet. I have been juicing, eating organic, no processed foods, no red meat...
I see my oncologist every two months now, no mention of treatment yet. Any words of wisdom are welcomed. Cindy

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Hi, I was diagnosed in 2013 with CLL. I am now 57 years old and this past year my WBC has risen to 31,000 along with smudge cells and most recently a few clefted lymphocytes (which I haven't googled the meaning of as of yet bc I tend to get a bit freaked out). I will be honest this diagnosis has affected me emotionally, I watched my father battle Non Hodgkin's lymphoma for 10 years and my younger sister, who is now 15 years remission.
I am curious if anyone has made any health changes as far as their diet. I have been juicing, eating organic, no processed foods, no red meat...
I see my oncologist every two months now, no mention of treatment yet. Any words of wisdom are welcomed. Cindy

Jump to this post

Hi, I was diagnosed in 2013 with CLL. I am now 57 years old and this past year my WBC has risen to 31,000 along with smudge cells and most recently a few clefted lymphocytes (which I haven't googled the meaning of as of yet bc I tend to get a bit freaked out). I will be honest this diagnosis has affected me emotionally, I watched my father battle Non Hodgkin's lymphoma for 10 years and my younger sister, who is now 15 years remission.
I am curious if anyone has made any health changes as far as their diet. I have been juicing, eating organic, no processed foods, no red meat...
I see my oncologist every two months now, no mention of treatment yet. Any words of wisdom are welcomed. Cindy

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