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.

@harrybare

I had a fast moving version of CLL. I was told I would die if I did not have chemo. I opted to go natural. Mayo Clinic did a study with cancer patients using green tea with EGCG. I contacted a specialist who has a Phd in nutrition–he lives in Jacksonville, FL. I used his program which was partially designed with the Mayo study–today I feel great.

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@harrybare, would you mind explaining the green tea with EGCG? I’m always curious to learn more about these sort of things, especially when it was something that was designed with help of Mayo Clinic.

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@harrybare

I had a fast moving version of CLL. I was told I would die if I did not have chemo. I opted to go natural. Mayo Clinic did a study with cancer patients using green tea with EGCG. I contacted a specialist who has a Phd in nutrition–he lives in Jacksonville, FL. I used his program which was partially designed with the Mayo study–today I feel great.

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@marthalewfinn918,

Hello Martha, Chronic lymphocytic leukemia (CLL) is a type of cancer of the blood and bone marrow — the spongy tissue inside bones where blood cells are made. You can read more about it here if you’d like, https://connect.mayoclinic.org/page/hematology/tab/resource-142/.

@marthalewfinn918, if you don’t mind sharing, what sparks your interest in CLL?

Liked by mena2020

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@harrybare

I had a fast moving version of CLL. I was told I would die if I did not have chemo. I opted to go natural. Mayo Clinic did a study with cancer patients using green tea with EGCG. I contacted a specialist who has a Phd in nutrition–he lives in Jacksonville, FL. I used his program which was partially designed with the Mayo study–today I feel great.

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Chronic Lymphonic Leukemia

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@harrybare

I had a fast moving version of CLL. I was told I would die if I did not have chemo. I opted to go natural. Mayo Clinic did a study with cancer patients using green tea with EGCG. I contacted a specialist who has a Phd in nutrition–he lives in Jacksonville, FL. I used his program which was partially designed with the Mayo study–today I feel great.

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Dr. Chanan Khan, at Mayo, has done a huge amount of research on CLL. He is considered a renowned expert in the field. The
green tea study, as you probably know was never made public. I met with Dr. Khan. The green tea, tumeric, and curcumasorb brought me back to health–it was a long struggle.

Liked by Cindy

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@harrybare

I had a fast moving version of CLL. I was told I would die if I did not have chemo. I opted to go natural. Mayo Clinic did a study with cancer patients using green tea with EGCG. I contacted a specialist who has a Phd in nutrition–he lives in Jacksonville, FL. I used his program which was partially designed with the Mayo study–today I feel great.

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Hi Justin. Inherited Amaloid TTR Related Familial Polyneuropathy runs in my family as determined by DNA testing by 23andme in 2013. My brother recently told me that he was told by his oncologist that he had a dormant form of leukemia. I’m researching.

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God bless you and surround you with a long healthy life to come; fellow CLL Member; I too was diagnosed with the chronic form nine years ago and never had to have treatment until 2016. Best of luck and my prayers are with you. I went with Chemo both times and the first four week treatment was with Rituxan and it was fine, last year, I had Rituxan and Bendamustine, The bendamustine was harsh; I had the shakes, ran a fever and had a few mouth sores but by October, it was winding down; Now, however I have no immune system and could use some help in regaining strength.

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I have a similar pattern of symptoms , frequent infections and enlarged lymph nodes and a doctor said I do have Hypogammaglobulinemia. I have suffer for many years and now developed Lymphomas. I knew my immune function was not well but never ever before any doctor suggested that term. I also have been diagnosed with Hashimoto disease and it causes me autoimmune attacks. I would like to know if this Hypogammagobulinemia coud has been caused by the thyroid disease. What doctors do we see for the Hypogammaglobulinemia and if anyone knows where to find a good doctor with that specialty.

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@JustinMcClanahan

@marthalewfinn918,

Hello Martha, Chronic lymphocytic leukemia (CLL) is a type of cancer of the blood and bone marrow — the spongy tissue inside bones where blood cells are made. You can read more about it here if you’d like, https://connect.mayoclinic.org/page/hematology/tab/resource-142/.

@marthalewfinn918, if you don’t mind sharing, what sparks your interest in CLL?

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I was diagnosed with CLL/SLL and now with Hypogammaglobilinemia…Which doctor see for it and what would be the treatment for Hypogammaglobilinemia? Have anyone visited Mayo Clinic in Arizona?

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Hello, I have been diagnosed in 2016 with MBL and after a Lymph nodes biopsy in 2018 they said it is CLL/SLL . I dont have treatment yet but my doctor wants me to start Imbruvica 420 Mg due to symptoms and frequent inflammations. I learned that CLL could be stable but SLL could be manifesting more and not showing in labs as it is in my case. Doctors usually start treatment when symptoms begin causing more limitations, when patients lose weight or experience pain but I am finding out that drugs aren't any easier… I have talked to someone who had the treatment with Imbruvica and she did not tolerate the higher dose. Her doctor had to suspend the medication and treat her with something else for a while. Then he started her with Imbruvica again but 140 Mg which she tolerated better. Her CLL went under remission with the lower dose. She described her tattoos getting red and very sore,, and that she felt very ill with the higher dose. But no one is the same so other people could tolerate a higher dose. My doctor refuses to start me with a lower dose so I refused the drug. Protocols can be an obstacle ,I am very allergic and sensitive and I must be careful with drugs. I am hoping to buy time and see if the Mayo Clinic cancer vaccination gets approved. Seems that some patients under trials went under remission. I hope for better and safer treatments. Meanwhile I try to stay positive , I meditate every day with Dr Joe Dispenza, follow a healthy diet , avoid crowds during Flu season or avoid getting sick by taking precautions. I do wash my veggies well and I eat safe. I learned through other patients experiences. I focus in visualizing myself healthy… Praying for a cure and for safer treatments ! Blessings

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