CLL leukemia: Just diagnosed, what can be done?

Hello @majid12, it’s been quite a long while since I’ve heard from you. How is your wife progressing with her followup for acute myeloid leukemia? I know she was waiting to find a donor for a bone marrow transplant. Has she been able to find a donor? Wishing you both well in this new year!

Hi @phof1, I add my welcome along with @loribmt. I moved your message to the Blood Cancers support group (https://connect.mayoclinic.org/group/blood-cancers-disorders/) to this existing discussion:
- CLL leukemia: Just diagnosed, what can be done? https://connect.mayoclinic.org/discussion/cll-leukemia/

I did this to help you connect with the other CLL-ers that Lori mentions. I look forward to learning more about you and where you are on the journey living with CLL.

A needle biopsy was done and I was suspected of having CLL. When a wide neck resection was done they found that I had Mantle Cell B non-Hodgkins Lymphoma and that I did not have CLL. I am currently on a wait and see course.

I have a Brain MRI coming up and a second PET scan to see where it is metastasizing.

Pat5

hi stu. my name is al and i live in atlanta. i was diagnosed with cll in 2006. i was "wait & see" for 9 years. when my wbc passed 350, my oncologist at the v.a. started chemotherapy. i didn't know the connection between agent orange and cll until a fellow veteran in the waiting room informed me. he said i should pursue agent orange-connected compensation. i was not in vietnam, but i boarded my first ship 11 days after it returned from a 6 month cruise in vietnam. the ship provided gunfire support on the coast and in the rivers. in 1966, no one had heard of agent orange , so i'm sure no cleanup was done. the v.a. turned down my application because i wasn't actually in vietnam. i've been in remission for 9 years, but in early 2022 my cll started recurring and my wbc is currently 100. would be interested to know if you've had any similar experiences! thanks for listening, al moretz

Hi Pat, my goodness, you’ve been through quite a bit in trying to get a firm diagnosis with your lymphoma. You had the surgery in September that gave you the ultimate diagnosis of Mantle Cell B non-Hodgkin’s Lymphoma. NHL for short. How was the recovery from the surgery?

There are numerous discussions in our forum for Non Hodgkin’s Lymphoma. This link is for the most current. When you comes up the oldest conversions are first so just click on the button under the opening statement to reverse the order from newest to oldest. You’ll meet other members or their family members who have NHL.
https://connect.mayoclinic.org/discussion/non-hodgkins-lymphoma-2c0eb7/
Fortunately this is usually slow to develop. Are you having symptoms? When is your MRI and PET scan?

The brain MRI is on Jan3. The PET full body scan is on Jan.23 Both are at Baptist Downtown.

Pat5

I was diagnosed 2 months ago,my labs are trending up. My HGB and RBC’s are a little low but nothing crazy. I was diagnosed because I was losing weight had swollen lymph nodes and fatigued. I am a nurse and I am so tired I don’t know how long I can work. Suggestions?

hi-i,too,have CLL-have had it for 7 years with no treatment-i am 69 and have been taking green tea extract since the diagnosis-started at 10,000mg per day-now at 5,000-my wbc was as high as 45000-now steady at 30-35000-was diagnosed at 21000 in routine blood work. all other blood counts are normal-hope this helps-
p.s. my doctor is not a fan of green tea -

Hello Kellim. My understanding is that Mayo suggests 2 cups green tea per day based on their study results using EGCG. I'm in "WATCH AND WAIT". It was found green tea helped slow progression during early disease. It has reduced swelling in my legs immensely. Most days I drink 3 cups.
I also drink beet juice for breakfast & eat whole beets, as much as possible, related to another studys findings. Beets make the microenviroment cll thrives in less hospitable.
Cll is chronic. Emphasis on CHRONIC. The new treatments are amazing. Best wishes.

Thank you for this information about green tea. I was a little confused about how much to take. I have been taking two capsules of green tea extract from Costco daily. I have read on another blog that some of the people in the Mayo Clinic trial had to drop out because their liver enzymes became to high. I think they were also taking Tumeric pills. This is very interesting about the beet juice also. I have read that it is an old remedy to build blood and have been boiling and eating 2 beets a day. Do you know the amount of EGCG and the type of EGCG used in the study? There are also studies from Taiwan about traditional Chinese medicine (herbs) being very effective for watch and wait people who have CLL which I am looking into. How long have you been taking the green tea and beet juice?