Living with CLL

[Letarosella1966]

I was diagnosed in Dec of 2023 with CLL. It shocked me to the core. So many things ran through my head after hearing this news. Thankfully I have a great hematologist . I do think about this on a daily basis, but do live my life to the fullest.

[Richard_TX]

I was diagnosed 9 years ago at 57. I was on W&W for 7+ years then started treatment on Brukinsa (14 months ago) at MD Anderson. I feel great and my Dr's say you cannot tell I have CLL by looking at my blood work. I take 4 capsules in the morning and go about my day. No side effects at all. It's no different than taking a handful of vitamins in the morning. You'll be fine.

[Silvafoxe in reply to Richard_TX]

Richard_TX

After taking Brukinsa for 7 months I have side effects. My bp has gotten extremely high , migraines everyday and I’ve had palpitations and tacyardia. Blood work was much improved at last visit but still areas either too low or too high. I will get a second PET scan next week. I’ve gained 6 pounds and my eating habits haven’t changed. I’m thankful I’m had the first months with outside effects but concerned that I have them now plus weight easing up. Wish you continued success on the Brukinsa.

[Ironj]

first hearing you have the word Cancer would scare anyone. That said after my first visit with my Cll specialist it put my mind at ease. I was diagnosed in 2018 and am on watch and monitor. It took me about 3 years to believe this condition is truly a chronic condition with so many treatments. I hope you come to terms that this is in fact a very controlled chronic condition if needed.

Best wish’s

John

[Guffy]

Hi. It is a shock. I was diagnosed in 2018, and it floored me. Of course you think about it a lot. I'm glad you have a specialist you trust. In time you will understand your disease more, and that will make it easier to cope. Bottom line is, if you're not feeling sick, you're doing OK. You've got a great attitude, deciding to keep living life to the full. You may never need treatment, and, if you do, the research has gone in leaps and bounds, and the drugs are effective. Any questions, please ask our experienced community. Take care now!

[DoriZett]

Your positive attitude is great!

For accurate and easily organized information on our disease, review CLLSOCIETY.org

This site is supportive and knowledgeable and you will learn a lot here.

Best to you!

[Dusty54321]

You are so fortunate to have a great haematologist with CLL expertise - I’m trying to find one and feel anxious and isolated

[Ptown]

Hello Letarosella, Our steadfast community stands at the ready to help you with any questions or concerns you might have. I did not find this group until four years had passed since my diagnosis during which time I felt a little alone and uncertain of my future. Once I “tuned” into our site, I felt so much better emotionally.

As for me, I was diagnosed after a thorough post-menopause physical examination showed elevated white cells. Further testing detected my CLL. My first reaction was, like so many of us here, incredulity. Then, as time went on, in my role as a classroom teacher of 10-year-olds, I kept getting exposed to respiratory infections that took longer and longer to recover from. I was told by my doctor that, after dealing with several respiratory infections the first two years, that I needed to stop teaching. I was 56 at the time.

Right now my blood numbers have plateaued and I feel pretty good. I don’t think much about my CLL other than being super careful around people who are showing cold symptoms, strategically sitting in the back row at theaters, wearing a mask on planes and buses and practicing strict hand washing. I check in with our community here every morning with a cup of coffee so as to witness the love, care, concern and compassion that is shown to others via this amazing site. It is, for me, a daily reminder of how great human beings can be!

Sending rays of support to you from my perch here in Michigan, USA. Carolyn

[Letarosella1966 in reply to Ptown]

I’m happy that there is a site for people with CLL. Not everyone understands this disease. I’m sure as time goes on I will get a better grasp of it.

[mrgreentea]

Hello & welcome! I also learned that I had CLL in Dec 2023. Just getting one's head wrapped around this was like taking a crash course in calculus while I still needed to work a full-time job. There is so much to learn, if you are curious. To keep my sanity I do limit the time I spend thinking or reading about it; I don't obsess over it. Hopefully, you will be in watch & wait for many years like so many others on this site. Still, once you do need them, the drugs today have gotten very good and continue to improve.

Some folks here do post their test results so that the experts on this site can help explain them, in case you are interested. This site and its community are an excellent resource.

[Northland]

That's the spirit! There are lots of good resources here in Ontario including Hematologists both local and at UHN/Princess Margaret Hospital for secondary consultations, Lymphoma Canada, The Leukemia & Lymphoma Society of Canada, WellSpring and the Ontario Trillium Fund to pay for meds. I was diagnosed with CLL at 59 in September 2019, on Watch & Wait for 8 months and living a perfectly active life while taking 3 Imbruvica/Ibrutinib capsules a day for the past 4 years. Good diet and exercise helps me enormously.

[skipro]

Hi

All of the previous comments are excellent.

I've been with this for over 13 years and I'm on my second bout with Chemo immunotherapy

my best description of the process is a roller coaster ride.

I must say that I'm grateful that new treatments have come along otherwise I wouldn't be here.

So there is a lot of hope for your situation.

And I agree with you on living unless about your disease the better off you will be long-term physically emotionally and psychologically and even spiritually

Good luck and God bless you on this journey

Ski pro

[al444]

take it easy eat healthy food green leaves as much as u can make movement sport if u can and forget about CLL

[sidesy]

It's a helluva thing to take in and accept and considering how many people I see in the hospital prior to this I wasn't even aware of CLL. I take each day as it comes ...some good , some not so but I have amazing friends around me and I'm still the most positive!! You're not alone 🙏🤝👍🏻