CLL leukemia: Just diagnosed, what can be done?

Medicine is changing very quickly over time. It is necessary to keep informed of the last changes for the best approach. One important example of this is the Chinese approach using curcumin. The following older study show curcumin was important, but also points out that in it's normal form capsules even up to 8000 to 12000 mg/day were not absorbed into the blood stream. What little gets to the blood only stays a few hours because it is water soluble.
https://www.sciencedirect.com/science/article/pii/S222116911730494X
All has changed now. Taking 95% curcuminoids with black pepper extract capsules orally is 2000% more absorbed into the blood. Available online. It still only stays in the body a short time, which can be remedied by taking it several times a day. More trials are being done to show the new found effectiveness of available cuccumin in the treatment of cancer and many other disorders or conditions.

For the last 2 years- since I was diagnosed.

Hi there...I am 53, and was diagnosed with CLL this week. I got the news while traveling abroad with my family; we were celebrating that both of my children are gainfully employed and leaving the nest this summer. I was shocked and devastated to say the least. Just as I was able to start focussing on my own wellbeing, this came out of nowhere. I hear great things about living long and fulfilling lives....but I am starting at (what I feel is) such a young age. Has anyone else been diagnosed in their early 50's and what has your experience been like?

I was diagnosed with CLL at age 54 & I’m now 82. It is a watch & wait chronic leukemia. I have taken oral chemo 3 times in past years when my white count got to over 80. Other than fatigue it has not caused any other life changes.

OMG.....You can imagine how happy this makes me feel. Did you make any major lifestyle changes? You're amazing...kudo's to you,

@pinkpocketbooks, I'd like to add my welcome. I'm so glad you connected with @nana120.

I moved your question about CLL to this existing discussion:
- CLL leukemia: Just diagnosed, what can be done? https://connect.mayoclinic.org/discussion/cll-leukemia/

I did this so you can read previous posts and connect with members like @kegraves @carl50 @rlybolt @mabfp3 @njhornung and many other members who have shared their CLL experiences.

CLL is generally a very slowly developing form of chronic leukemia. Treatment may not be needed right away. What next steps have been suggested for you?

No real changes, just regular lab work to check white blood count and listen to your body. Rest when you need it! I remember how unnerving my original diagnosis was and would tell you to take a deep breath & live your life.

Hi everyone, it has been 2 days short of a year since I found this group. So much has changed in that time. The CLL diagnosis was startling, even at level 0 and no treatment required. The blood tests keep it in my mind, but not necessarily on the top all the time. The night sweats are a pain in the backside, but I can live with them, they are not that different than the ones from hot flashes. But with all that said, now that my husband died unexpectedly from totally undiagnosed cancer and all the subsequent life changes, I find my fear of the CLL has increased. We had no children, our parents are all gone, only one surviving sibling from either of us, all far away. I am alone, except for 3 dogs. I am nearly overwhelmed and find I am so very tired all the time. I have chills then the sweats. I have lost a lot of weight, probably because I am not eating as often as when I cooked for him every day. Yes, I know I am whining. So many here are having a worse time than I. I do apologize, I haven't anyone else right now. My CLL doc will call in a few days with the results of the latest blood tests and I am worried I will have to begin treatments. I don't know how I will manage those, the nearest facility is a 4 hour, one way drive. I'm told by others, I will have to have someone with me for those. What do we do if we have no one to go with us for those? I am sorry to dump all this here, hoping someone can give me guidance and a bit of hope.

I’m so sorry you are going through this alone. My suggestion would be to locate a loving church family to support you. I do want to say that I have had oral chemo 3 times in the almost 4 decades I have had CLL and it is very manageable with minimal side affects. Blessings as you travel this road!

Oh my gosh, @aleeab, you are in a world of hurt right now and it’s ok to whine! You have a family here in Connect. I just wish we all lived closer to be able to help each other out physically…but emotionally will have to do for how.

I’m so sorry to hear about the loss of your husband. That’s incredibly difficult to try and pick up the pieces of life after that. And now you’re worried that your CLL may be resurfacing. Severe stress can also produce similar symptoms that you’re experiencing. The important thing first will be to wait for those blood results. I know how anxiety producing that can be. So, distraction is often the best way to keep yourself from filling your mind with those dreaded, ‘what if’ scenarios…those are stressors in themselves.

If your CLL is being progressive there are treatment possibilities that don’t necessarily involve infusions. This is something you’ll need to talk over with your oncologist. Is there no local hospital near you with an infusion center?

I also understand your concern if you’re having to cope with the task of traveling to and from an infusion center on your own. I know the American Cancer Society has Roads to Recovery program where cancer patients are able to get rides. https://www.cancer.org/support-programs-and-services/road-to-recovery.html

Do you have any friends who would be able to help you out? How about members from a church or a local organization that you may belong to?

I hope you get good news with the lab results! In the meantime, if the weather is great, get outside with your 3 doggos…what breed are they?