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.

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@dpfohl1

Hi. I’m almost 59 and just diagnosed with CLL. No symptoms as of today. How are you doing?

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@dpfohl1, how was your diagnosis of CLL discovered? I assume that since you are asymptomatic, your treatment plan is active surveillance. Is that correct? How are you doing?

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I have been diagnosed with CLL also but at zero stage so far. I am on no treatment. I also have Bullous Pemphigoid which can be related to the CLL. I hope you find just the right doctor who listens to you!

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@lucksuen

I'm also taking curcumin capsules, 500 mg each, two a day.
Natural therapies, that's a pretty complex field. Some MDs in our country, including some hematologists, have actually teamed up to do some scientific experiments, looking into whether curcumin, green tea extract, and papaya leaf extract can help alleviate the symptoms of blood diseases.
From what I've dug up, the scientific conclusions they've reached are just limited to specific conditions, particular experimental settings, meaning that when leukemia cells are in a certain environment, using some natural therapies can lead to apoptosis, but these studies haven't been further confirmed in clinical trials.

Why do many doctors at big hospitals look down on natural therapies? I've heard some doctors say this: If the patient isn't short on cash, they can try supplements, vitamins, and all that.
The implication is, they think taking supplements doesn't really help with the treatment outcome, just a waste of some money.

Patty,I think there's no need to be troubled. We're looking for ways to help ourselves. Even if it's not recognized by doctors, even if it doesn't pan out in the end, we've given it a shot.

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@lucksuen
Absolutely!
I view my relationship with my various specialists as teamwork to optimize my overall health. I have actively searched for the right match when I require a specialist. At the top of my list is a physician who listens to me and is responsive to my concerns or requests. If I take the time to read and research to be better informed about my options and want to try something outside of his comfort zone, I want to know why. He tends to be well versed on recent data.
I advocate for my own empowerment in the healthcare system. That makes me feel less a pawn in a big system of care, and more like a decision maker. The mind/body connection is crucial to my sense of well being. If my physician does not support that, we would have this very discussion.

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@pmm

@lucksuen
I am taking a relatively modest dose of Turmeric (1,000 mg daily) for reducing paraprotein levels and bone resorption. I have MGUS and there are mixed results on the effectiveness of taking Turmeric in the literature. So far, there has not been much improvement for me but it has been only 5 months.
My Hem/Onc physician didn’t discourage me, but was not optimistic it would help either.
Since I am also type 2 diabetic with hypertension and Celiac, I do not take anything over the counter without first ensuring that it does not interfere with my prescribed medication, or have possible unintended consequences. So I asked my PCP to arrange for a medication consultation with the pharmacist attached to the department.
While I learn a lot from other Connect members about the medication, supplements and treatments, each of us are different. Even if we share a broad diagnosis, we have different coexisting conditions, subtypes of blood disorders, etc. it demands diligence on our part to do due diligence exploring possible unintended negative consequences. So we can learn about things that may or may not be helpful to us, but we need to get some guidance before we try someone else’s suggestions.
Now having said all that, if I felt that my doctor was dismissive of alternative treatments I would want to know why. Can you ask your doctor why he doesn’t believe supplements will not be helpful. What data has he or she read that helped to formulate that opinion? If you decide to try supplements, will there be unintended negative consequences? If not, will your doctor support a trial to see if your condition improves?

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I'm also taking curcumin capsules, 500 mg each, two a day.
Natural therapies, that's a pretty complex field. Some MDs in our country, including some hematologists, have actually teamed up to do some scientific experiments, looking into whether curcumin, green tea extract, and papaya leaf extract can help alleviate the symptoms of blood diseases.
From what I've dug up, the scientific conclusions they've reached are just limited to specific conditions, particular experimental settings, meaning that when leukemia cells are in a certain environment, using some natural therapies can lead to apoptosis, but these studies haven't been further confirmed in clinical trials.

Why do many doctors at big hospitals look down on natural therapies? I've heard some doctors say this: If the patient isn't short on cash, they can try supplements, vitamins, and all that.
The implication is, they think taking supplements doesn't really help with the treatment outcome, just a waste of some money.

Patty,I think there's no need to be troubled. We're looking for ways to help ourselves. Even if it's not recognized by doctors, even if it doesn't pan out in the end, we've given it a shot.

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@lucksuen
I am taking a relatively modest dose of Turmeric (1,000 mg daily) for reducing paraprotein levels and bone resorption. I have MGUS and there are mixed results on the effectiveness of taking Turmeric in the literature. So far, there has not been much improvement for me but it has been only 5 months.
My Hem/Onc physician didn’t discourage me, but was not optimistic it would help either.
Since I am also type 2 diabetic with hypertension and Celiac, I do not take anything over the counter without first ensuring that it does not interfere with my prescribed medication, or have possible unintended consequences. So I asked my PCP to arrange for a medication consultation with the pharmacist attached to the department.
While I learn a lot from other Connect members about the medication, supplements and treatments, each of us are different. Even if we share a broad diagnosis, we have different coexisting conditions, subtypes of blood disorders, etc. it demands diligence on our part to do due diligence exploring possible unintended negative consequences. So we can learn about things that may or may not be helpful to us, but we need to get some guidance before we try someone else’s suggestions.
Now having said all that, if I felt that my doctor was dismissive of alternative treatments I would want to know why. Can you ask your doctor why he doesn’t believe supplements will not be helpful. What data has he or she read that helped to formulate that opinion? If you decide to try supplements, will there be unintended negative consequences? If not, will your doctor support a trial to see if your condition improves?

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@pmm

@stuartg and @lucksuen , I’m wondering if there is a PharmD attached to your hematologist’s practice to give you some guidance. I have asked my hem/onc doctor about supplements and kind of felt like I got the “brush off.” I was persistent, however, and he got the pharmacist attached to the service to give me a call. She was amazing. She went through all my meds with me to check on compatibility and then came up with recommended dosage for the supplements I was considering.
Do you get good information from your physicians?

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My hematologist, they don't understand the help of supplements for my body, they are quite stubborn and still adhere to traditional treatment methods, so they can't give me any advice.
Patty, I would like to consult you about the recommended dosage of supplements, what are you taking now?
thank you!

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@pmm

Hello @nanokrang and welcome to the Blood Cancers and Disorders discussions. Do you have any side effects from the infusions?

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Luckily, I have not had any side effects. I’m not sure if there is a possibility for any. Hope you feel better soon.

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@stuartg

I suggest you google how much you should take. A high dose such as I take supposedly can cause liver damage. To date I don't have a liver problem. I wish I could remember the link to the article that I got the info from where I learnt how much to take but unfortunately I didn't take note of it.

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@stuartg and @lucksuen , I’m wondering if there is a PharmD attached to your hematologist’s practice to give you some guidance. I have asked my hem/onc doctor about supplements and kind of felt like I got the “brush off.” I was persistent, however, and he got the pharmacist attached to the service to give me a call. She was amazing. She went through all my meds with me to check on compatibility and then came up with recommended dosage for the supplements I was considering.
Do you get good information from your physicians?

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Hello @nanokrang and welcome to the Blood Cancers and Disorders discussions. Do you have any side effects from the infusions?

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@stuartg

I am still taking the EGCG, but 2 or 3 years ago increased the dose to 3 x 600mg capsules morning and night after reading somewhere that the dose I was taking wasn't the recommended dose.

My lymphocytes bounced around each quarterly blood test but went down more than up.

Last test in April the lymphocytes were down to about 9.5.

Unfortunately the fatigue is getting worse despite the lymphocytes going down. Maybe something else is causing it?

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I find that when my immunoglobulin falls, I get very fatigued. I tend to get an IgG infusion whenever my count is below 400. That is usually a few time per year for me.

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