CLL leukemia: Just diagnosed, what can be done?

@loribmt UGH I'm trying so hard to not think about it every second of the day. I have always been one to appreciate life and stay positive! I just signed up to start YOGA on Monday and I'm eating more healthy foods and walking everyday! I just need to keep my mind more busy and try not to think about what the future holds for me! Thank you so much for your kind words of encouragement, it helps me more than you know! I am going to get a second opinion because I figure it can't hurt.

These pesky blood disorders don’t play fair, that’s for sure. I was super healthy all my life and did everything could to avoid getting cancer…or so I thought. I never even considered that I would get a blood cancer! 🙄 Clipped me right off at the knees within 3 weeks time. It was a very aggressive leukemia, Acute Myeloid Leukemia with several mutations making it a little bit of a challenge. But here I am 3.5 years later and feeling fabulous.

That’s why I’m here on Connect. I want to help other members see that there is always hope! You have what it takes to ride this out! I can see it already with your launching into a yoga class on Monday! That’s fantastic. I do want to caution you that with a blood condition your immune system isn’t as robust as it could be. So you’ll want to mask up and use hand sanitizers in public gatherings where you might be exposed to covid. Just keep that in mind. But exercise is so important in keeping up strength and mental health. 🙂

A second opinion is a great idea. I’m a little partial, but you can always try the Mayo Clinic. Here’s a link to get you started if you’re interested. http://mayocl.in/1mtmR63

This is such a new diagnosis for you that it is front and center in your thoughts. But over time, when you realize nothing is changing drastically, I think you’ll find it fades into the background.

I’ll be curious to see how the yoga class goes! Have you practiced yoga in the past?

We are currently living in Indonesia, I'll ask the doctor about the organization you suggested, thank you

I was on a 2007 Mayo study of green tea (high dose EGCG) for CLL. Results were inconclusive. Be sure to closely monitor liver enzymes if on this treatment. High doses of EGCG can cause liver damage.

how many mg.per day of green tea extract ?

I would be interested in hearing how it goes for your partner - my oncologist is planning the same for me in the next week or so
Thank you

Welcome @rsharp. If I'm reading your reply to @pieter1961 correctly, you'll be starting treatment with venetoclax and obinutuzumab (Gazyva) soon.

I read in your profile that CLL is your 4th rodeo with cancer and that you were first diagnosed with CLL in 2018. Were you watchful waiting up until now and this is the first treatment line for CLL for you?

Thank you for reaching out. Yes I have been on the watch and wait until this year and then it’s been watch it climb. Yes, I will be starting the targeted therapy infusions this week - Tuesday and Wednesday. This is my first treatment. Hoping to slow it down and/or go into remission. I had to get 2 units of blood last week due to low hemoglobin levels and my blood work from Friday still shows I am low on that, my RBC and platelets low as well and of course my WBC is high. I have been apprehensive since diagnosis about whether to do treatment but here we are. Any insight on the treatment would be appreciated if you have any.
Thanks !
Robin Sharp

Can you share your experience with CLL