CLL - newly diagnosed

Posted by gerryk @gerryk, Sep 2, 2016

My doctor discovered smudge cells as a pre-cursor to CLL in Dec. 2015. This spring of 2016, my lyphmocyte count put over the 5000 threshold wherein I now have CLL. I am 68.

I am blessed that this is a CHRONIC versus an ACUTE cancer.

That said, I am aware that I will ultimately require some form of treatment.

It appears from the information that I have read that the forms of treatment are:

1. CHEMOTHERAPY;
2. IMBRUVICA (IMBRUTINIB)
3. IMMUNOTHERAPY

I am somewhat reluctant to consider chemotherapy.

I would be interested in hearing from CLL patients who have been exposed to EITHER IMBRUVICA or, IMMUNOTHERAPY……..the success, failure, side effects etc.

Thank you so much for taking the time to respond.

@dougmann

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’m 80 years young, was diagnosed with CLL in 2004 and was under Dr P. Kaywin watchful care for 9 years until I moved from Florida to Michigan and my condition care was taken over by Dr B. barthel of the Henry ford health system who continue watching the progression of the CLL until the summer of 2016 when a joint decision was made to do treatment because my spleen had reached a point of growth that it was pushing on my stomach. My treatment was for three monthly infusions including immunotherapy with absolutely no side effects. It has been nine months since we finished the treatment and I’ve gone back to live a normal life with no restrictions and only regular check ups with my oncologist and other health practitioners on a regular basis.
Nelson riveros

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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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@ssid

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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I would ask your oncologist if it would be alright if you took curcumin or turmeric.

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@ssid

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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Cindy
I have not changed my diet but here is some info that might offer some comfort. I am 70 and have had cll for 7 years. My white cells increased every quarterly checkup until they reached over 200 thousand. At that time my lymph nodes and spleen were swollen. I went into a clinical trial and take ibrutinib daily. No more swollen nodes and my white cell count has gone down to 12 thousand as of yesterday.This drug is now FDA approved. You may never need treatment but if you get to that point that drug worked wonders for me. Good luck to you.
gmack

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@ssid

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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Thank you for this information, I appreciate you sharing this with me.
Continued health to you,
Cindy

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@ssid

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 taking turmeric…maybe I should start again. Thank you

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@ssid

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,
How long have you been taking this? Just curious as to the length of time it took to lower your WBC…

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@ssid

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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over two years.

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I have been dealing with fluid in my left ear and muffled hearing since July…tried everything from nasal spray, allergy meds, 2 rounds of antibiotics/steroid pack with no relief. All though the steroids did offer some relief for about a month but my oncologist prefers me not to take oral steroids again because it messes with my wbc count. This past week I had a tube put into my ear which did releave the pressure I was feeling but my hearing is still muffled, very frustrating. I also have swollen nodes in front and behind my ear on that side. Has anyone else with CLL experienced this. The ENT mentioned the lymph tissue in the back of my nose and throat showed inflammation and a CT scan also showed some enlarged nodes in the neck area. My oncologist doesn’t seem to be concerned with the size of these nodes. I thought the ear tube would resolve this issue but it has not completely helped. I am hesitant about the tube working but I will give it some more time…

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@ssid

I have been dealing with fluid in my left ear and muffled hearing since July…tried everything from nasal spray, allergy meds, 2 rounds of antibiotics/steroid pack with no relief. All though the steroids did offer some relief for about a month but my oncologist prefers me not to take oral steroids again because it messes with my wbc count. This past week I had a tube put into my ear which did releave the pressure I was feeling but my hearing is still muffled, very frustrating. I also have swollen nodes in front and behind my ear on that side. Has anyone else with CLL experienced this. The ENT mentioned the lymph tissue in the back of my nose and throat showed inflammation and a CT scan also showed some enlarged nodes in the neck area. My oncologist doesn’t seem to be concerned with the size of these nodes. I thought the ear tube would resolve this issue but it has not completely helped. I am hesitant about the tube working but I will give it some more time…

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This sounds rather frustrating Cindy. I am tagging @vonbaron36, @gmack, @7626, @sofaramnotdead, @dougmann, and @gerryk, some of whom you have met in this discussion, that have all discussed CLL and may have experienced fluid in the ear such as yourself.

@ssid, you mentioned you had a tube put in your ear and it did help a little. Does this mean the tube is still in your ear, or was that a temporary thing? It is good your oncologist is not concerned about the nodes, but the muffled hearing must be frustrating. Is this something that they said would be temporary with tubes?

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Yes, the tube was put in on Dec 1st, and I was told I can leave it in or remove it in 6 months, my choice. The constant sound of my heart beat in the ear is hard to adjust to, not sure this is normal. I will call the ENT this Friday and voice my concerns. The tube did relieve the pressure I was feeling but did not correct the muffled hearing. I am guessing an enlarged lymph node is involved. I also have an enlarged gland, the size of a large gum ball, on my jaw line which I have been told is a salivary gland or lymph node ….the ent and oncologist can not agree. I will throw myself into Christmas for now and see what the oncologist has to say when I see him in January.

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@ssid

Yes, the tube was put in on Dec 1st, and I was told I can leave it in or remove it in 6 months, my choice. The constant sound of my heart beat in the ear is hard to adjust to, not sure this is normal. I will call the ENT this Friday and voice my concerns. The tube did relieve the pressure I was feeling but did not correct the muffled hearing. I am guessing an enlarged lymph node is involved. I also have an enlarged gland, the size of a large gum ball, on my jaw line which I have been told is a salivary gland or lymph node ….the ent and oncologist can not agree. I will throw myself into Christmas for now and see what the oncologist has to say when I see him in January.

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Have you consulted a CLL specialist? I encountered non-specialists who were either ignorant of or disregarded guidelines for diagnosis and treatment of CLL issued by the International Workshop for CLL. I met criteria for treatment based on lymphoma symptoms, but the doctors wouldn’t consider treatment prior to late rai stage. If you are having serious ENT problems secondary to enlarged lymph nodes, maybe it is time to consider CLL treatment, such as with Imbruvica.

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I started imbruvica on Oct 4, 2017. I had rituxan infusions, 2 sets of 4, in 2016 because of symptoms of spleen ischemia (I also had lymphoma symptoms, including night sweats and frequent bacterial infections until late in 2016). My lymphocyte count dropped below 2K at one point and was at 10K when I started imbruvica because of worsening lymphoma symptoms. At two weeks after starting imbruvica my lymphocyte count had risen to 20K and to 30K 6 weeks after starting imbruvica. There was notable reduction in palpable lymph node sizes at both the first and second check ups, and milder and less frequent night sweat (which I note on my calendar). I am taking only 2 capsules daily. I had a transient localized allergic rash soon after starting imbruvica that might have been caused by Imbruvica. But otherwise, no apparent side effect, e.g., no bleeding problems.

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@dougmann

I started imbruvica on Oct 4, 2017. I had rituxan infusions, 2 sets of 4, in 2016 because of symptoms of spleen ischemia (I also had lymphoma symptoms, including night sweats and frequent bacterial infections until late in 2016). My lymphocyte count dropped below 2K at one point and was at 10K when I started imbruvica because of worsening lymphoma symptoms. At two weeks after starting imbruvica my lymphocyte count had risen to 20K and to 30K 6 weeks after starting imbruvica. There was notable reduction in palpable lymph node sizes at both the first and second check ups, and milder and less frequent night sweat (which I note on my calendar). I am taking only 2 capsules daily. I had a transient localized allergic rash soon after starting imbruvica that might have been caused by Imbruvica. But otherwise, no apparent side effect, e.g., no bleeding problems.

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Thank you, I see my oncologist in 4weeks and I will mention this. I will also look into a CLL specialist.

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I was diagnosed with CLL in October 2017 with WBC of 32,000 and lower platelet counts. My WBC/platelet counts have been going up and down with every monthly check. My spleen is enlarged and am looking at possible treatment in the near future. Since diagnosis, I have made changes in diet, along with taking turmeric/green tea supplement Protandim daily, drinking green tea daily and eating blueberries daily. I do not know of effects of these natural health changes as of yet. Any recommendations on treatments? Natural health success stories?

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