CLL - newly diagnosed

@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?

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

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！

@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?

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.

@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.

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!

@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?

Thanks for sharing this story....I was diagnosed not quite a month ago and was devastated at 53. Since then, I think I've been in denial and each time I go to a doc, assume they're going to say there's been a mistake...I love that you mention denial, and also the divorce. I have a beautiful life from the outside, have been married 29 years and we have raised two great adult men. But. I have always considered leaving and being on my own...mostly b/c while we get along fine, we have grown apart and our interests do not align. Does it make sense to finally venture off at this point? We realyl have a beautiful home and life, but this diagnoses has really got me thinking....

Hi Colleen. I’m doing well. It’s still hard to grasp as otherwise I’m a very healthy individual. I did seek a 2nd opinion at MD Anderson and glad I did. He did further testing to include a bone marrow aspiration and biopsy. He wants my blood drawn monthly instead of every 3 months for now. I am considered stage 1 due to slight swelling in lymph nodes on my neck. I am asymptomatic and feeling good. Just trying to learn how to accept it and move forward without fear.
I have a wonderful support system with my husband, grown boys and friends which definitely helps.