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 | Jan 6, 2018

In reply to @kanaazpereira "Thanks so much for the update, @nellieblue. It always helps to hear from people who have..." + (show)

We have not talked about treatment as of yet. He is waiting to see what my numbers are in 4 weeks.

Justin McClanahan, Moderator | @JustinMcClanahan | Jan 8, 2018

In reply to @kanaazpereira "Thanks so much for the update, @nellieblue. It always helps to hear from people who have..." + (show)

@ssid, that is interesting that your provider mentioned you could change your hemoglobin with adding foods to your diet. What sort of foods are you adding to your diet? You mention you are going to see what your numbers are in 4 weeks. If you don't mind sharing, will you be checking to see if your diet changes affect your hemoglobin numbers?

Cindy | @ssid | Jan 8, 2018

If the hemoglobin is from iron deficiency than eat foods rich in iron

harrybare | @harrybare | Jan 16, 2018

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.

marthalewfinn918 | @marthalewfinn918 | Jan 17, 2018

In reply to @harrybare "I had a fast moving version of CLL. I was told I would die if I..." + (show)

Glad to hear of your success. Could you tell me what CLL is?

Justin McClanahan, Moderator | @JustinMcClanahan | Jan 17, 2018

In reply to @harrybare "I had a fast moving version of CLL. I was told I would die if I..." + (show)

@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.

Justin McClanahan, Moderator | @JustinMcClanahan | Jan 17, 2018

In reply to @harrybare "I had a fast moving version of CLL. I was told I would die if I..." + (show)

@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?

harrybare | @harrybare | Jan 17, 2018

In reply to @harrybare "I had a fast moving version of CLL. I was told I would die if I..." + (show)

Chronic Lymphonic Leukemia

harrybare | @harrybare | Jan 17, 2018

In reply to @harrybare "I had a fast moving version of CLL. I was told I would die if I..." + (show)

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.

marthalewfinn918 | @marthalewfinn918 | Jan 18, 2018

In reply to @harrybare "I had a fast moving version of CLL. I was told I would die if I..." + (show)

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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