CLL leukemia: Just diagnosed, what can be done?

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

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

green tea extract-i was diagnosed with cll 7 years ago= started takng this-10,000 mg per day- 30 pills -my numbers are a bit hgher-22000 wbc-now 32000-in 7 years-please try it-why dont doctors recommend it-take green tea extract NOW!!!!!!!!!!!!!!!

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.

Update: I met with my doctor and I will go back in 3 months for a blood test to check WBC she was very encouraging that this just started since I do not have any symptoms and it was found through a routine physical. It’s a weird feeling knowing you have cancer but there is nothing I can do right now 😩.

Good morning, @wmisyr I’d accept that as excellent news that you’re not needing any treatment and are having no symptoms of your CLL. ☺️ It’s generally a very slow to develop blood disorder, often not requiring any intervention for many years. When that happens there treatments that can slow the progression.

I found an interesting article on Watchful Waiting~Benefits and Risks, that you might find helpful. https://www.verywellhealth.com/what-is-watchful-waiting-2249214

My advice to you is to try and put this in the back of your mind and live every day to the fullest. Every person is living with a length of ‘borrowed time’ whether they have a medical condition or not. I sometimes think it’s an advantage to know we’re not immortal. For me, leukemia and remission has given me a new outlook on living life with no regrets and treating every day as a gift.

Staying positive and upbeat are really helpful traits to get you through this initial stage of ‘what ifs’… because that just takes you to the negative. Instead, focus on positive things in your life and look to future projects or activities to propel you forward. What do you enjoy doing daily or for hobbies?

@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.

I got in touch with Be A MATCH it is an organization give you some financial help before and after transplant
. If I recall you have to be diganosis with Leukemia. There are few more organizations that can help you also financially however social worker needed my diagnosis, and income information. I
had to Find a good insurance, depending where I lived also I applied for state insurance. I had to find good hospital who have great oncologist who knew about my leukemia and will allow me ask questions and be in the decision process, I always have to do my research carefully who and what I read because everyone don't know about my diagnosis. I even looked up all new medicine, I got print out
from hospital pharmacy and we went over all medications side effects of all medications, I got positive team no Debbie dowers, I stayed positive no matter what told myself GOD has last say so! I even write it on board in hospital. I know I tried to go to hospital out of
State my insurance wouldn't allow me, I think all insurance should allow patients to attend any hospital in any state for non emergency care to go to best hospitals where more than one doctor know little about your diagnosis. where studies and trials are being performed, This is just my opinion.

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?

no liver issues and i take a statin and have a vodka every night-