CLL - newly diagnosed

Yes, I certainly had many of the common CLL/SLL signs and symptoms. Intense fatigue and tiredness, frequent night sweats, swollen glands, painful spleen (although not enlarged), itching that wouldn’t go away when scratched, unexplained bruising, shortness of breath and off-the-chart WBC and lymphocyte count along with a shrinking platelet and RBC count.

One of my sisters also has CLL (possibly SLL but she refuses to get her lymph nodes biopsied) and I lost an older sister to aggressive acute lymphoblastic lymphoma. I take quiet issue when doctors say leukemia or lymphoma isn’t hereditary.

Like most oncologists, mine followed published guidelines and recommended the watch and wait approach with follow-up visits and lab work every 3-months. I also received a CT scan, lymph node biopsy, bone marrow biopsy, flow cytometry and a FISH CLL panel. Finally, after close to a year of watch and wait he felt treatment was a worthwhile next step.

The wait was most definitely worth it so far. All the above symptoms diminished or totally disappeared in the first 10-14 days. The Gazyva treatment dropped my WBC and lymphocytes counts from extremely elevated to slightly below normal within 36 hours after the second infusion. It worked so fast that I received repeat bloodwork very often to monitor for tumor lysis. I only had infusion reactions on infusion days 1 and 2 and was fine after that.

Welcome to Connect and a huge thank you for sharing your experience with CLL and your treatment plan. Your information will be helpful for other members who are either in a watchful waiting period or just beginning their treatment. So often the looming thought of treatment is the scariest part. But there are so many options available and you’re getting great care with your oncologist. This will be very encouraging for other members to see.

Do you find that your health improved on the meds? Were you experiencing symptoms before treatment such as fatigue?

I’ve had SLL (same as CLL but predominantly in the lymph system vs. blood) for many years and declined to the point that my oncologist recommended treatment. I started oral Venetoclax (Venclexta), a BCL2 inhibitor, plus infusions of Obinutuzumab (Gazyva), a CD20 inhibitor, immunotherapy and targeted therapy two months ago and my bloodwork and all my symptoms dramatically improved within the first two weeks.

Treatment symptoms are mild compared to chemo and you may wish to ask your oncologist about this treatment. While there is no cure for CLL/SLL, my oncologist says he consistently finds longer and deeper remissions, along with lower levels of residual disease with this protocol than with all other treatments including BTK inhibitors.

Hi @tina, It’s been quite a while since we’ve chatted. I hope ‘no news is good news’! How are you doing with your CLL? Are you still having Ibrutinib as your treatment option?

I would strongly recommend wearing wrap around glasses: sun glasses or plain, to prevent any virus entering your body via this vector. In addition, continue using a mask; covering the nose and mouth will strengthen your protection and of course regular vaccinations. All the best M

Hi @tinagibson, it’s been quite a long time since we’ve chatted. I wanted to do a little followup to see how you’re doing with your CLL and what treatments are working for you?

First learned of my CLL (level o) diagnosis nearly 9 years ago and now at 72 yrs young I’m healthy and very active. I do blood work twice a year and seldom think of my condition. Completed all my Covid shots and luckily no Covid contact.
Best of luck
Carl

Just to let you know I've had Cll for about seven years now and have been quite healthy since. I am currently on what the doctor calls watch and wait. Last year I came down with Covid and had what seemed like a nasty case of the flu. After about two weeks I recovered with no side effects. Maybe I was just lucky, but it seems if you take care of your health and caught Covid you have a good chance of recovery. By the way I had been vaccinated three times by that point and still caught it. Just live your life as you want and don't let this drag you down. Most of the time I forget I even have it. I see my doctor once a year and he says it will be many more before I need any treatment. Good luck to you

Good morning. Brand new to this forum. Was diagnosed with CLL a year and a half ago at age 57. Total shock as I have been very healthy all my life. I'm very fortunate to still be very healthy, considering! I find myself still in denial at times, as I have no symptoms that I am aware of. I have one comment and one question...
My oldest son was diagnosed with ALL at the age of 3, and is now a healthy, wonderful 31 year old. I am grateful beyond words for that miracle. I also just learned that my Dad has had CLL since he was 58 and he is now 80! Also heard over the years that my Great Grandfather had leukemia, but that was many years ago, so not sure what kind. My maternal Grandfather also died of leukemia, but again, not sure what form. Anyone else have a family history of CLL or other forms of leukemia? I may take part in a study at Dana Farber, but have not shared my diagnosis with my parents as I don't want to worry them if there is no need to.
My question is this: has anyone's doctor warned them about being very careful Not to get Covid? I have had 5 shots, try and stay out of crowds, wear a mask in public always since the start of the pandemic. Of course I don't want to get Covid and have been lucky that no one in my immediate family has. But I was wondering if it is necessary to constantly wear a mask around everyone outside of my immediate family and a few close friends, if going out to eat is off limits, if wearing a mask around anyone I know that has Not been vaccinated? I don't mean to whine, but being the only one wearing a mask (or so it seems!) and avoiding many of the things I used to do (or people that are not vaccinated) out of caution is on my mind frequently. Anyone have any thoughts?
Thank you.

Well, now I’m all misty-eyed, thank you. ☺️ And I have an earworm for the day…you too!! 🎶 Stayin’ Alive. 🎶

I’m glad you have a strong support team. Though I really think you’ll find that this medication will just become part of your daily life and you’ll not have any issues.

I dreaded the thought of all the meds that I had to talk about with the pharmacist on my transplant team. I’d never had more than Vit D3 tabs in my medicine cabinet! Going from that to having a huge daily pill dispenser to keep the meds straight was intimidating. Not to mention the meds themselves! But I stopped reading the labels and starting letting the medications do their job. They all worked and only one of 9 meds gave me a hint of a side effect. You’re not on any of those meds! And you’ll be only taking one. It may not bother you at all but it will reduce the chance of your CLL taking over.

Even on the meds, I’m back to walking 6-8 miles daily and feeling like a nothing ever happened. So go put on those disco boots and kick CLL’s butt! LOL