1. < Blood Cancers & Disorders

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.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

Cindy | @ssid | Aug 12, 2017
In reply to @ssid "Hi, I was diagnosed in 2013 with CLL. I am now 57 years old and this..." + (show)
@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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Cindy | @ssid | Aug 12, 2017
In reply to @ssid "Hi, I was diagnosed in 2013 with CLL. I am now 57 years old and this..." + (show)
@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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vonbaron36 | @vonbaron36 | Aug 13, 2017
In reply to @ssid "Hi, I was diagnosed in 2013 with CLL. I am now 57 years old and this..." + (show)
@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

Jump to this post

over two years.

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Cindy | @ssid | Dec 3, 2017

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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1 reply
Moderator
Justin McClanahan, Moderator | @JustinMcClanahan | Dec 5, 2017
In reply to @ssid "I have been dealing with fluid in my left ear and muffled hearing since July...tried everything..." + (show)
@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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Cindy | @ssid | Dec 5, 2017

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.

REPLY
1 reply
Doug Mann | @dougmann | Dec 6, 2017
In reply to @ssid "Yes, the tube was put in on Dec 1st, and I was told I can leave..." + (show)
@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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Doug Mann | @dougmann | Dec 6, 2017

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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1 reply
Cindy | @ssid | Dec 7, 2017
In reply to @dougmann "I started imbruvica on Oct 4, 2017. I had rituxan infusions, 2 sets of 4, in..." + (show)
@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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rmoen | @rmoen | Dec 18, 2017

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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