1. < Blood Cancers & Disorders

CLL - newly diagnosed

Posted by gerryk @gerryk, Sep 2, 2016

My doctor discovered smudge cells as a pre-cursor to CLL in Dec. 2015. This spring of 2016, my lyphmocyte count put over the 5000 threshold wherein I now have CLL. I am 68.

I am blessed that this is a CHRONIC versus an ACUTE cancer.

That said, I am aware that I will ultimately require some form of treatment.

It appears from the information that I have read that the forms of treatment are:

1. CHEMOTHERAPY;
2. IMBRUVICA (IMBRUTINIB)
3. IMMUNOTHERAPY

I am somewhat reluctant to consider chemotherapy.

I would be interested in hearing from CLL patients who have been exposed to EITHER IMBRUVICA or, IMMUNOTHERAPY........the success, failure, side effects etc.

Thank you so much for taking the time to respond.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

anp | @anp | Oct 8, 2023
In reply to @alanahawaii "Good morning. Brand new to this forum. Was diagnosed with CLL a year and a half..." + (show)
@alanahawaii

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.

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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

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Mentor
Lori, Volunteer Mentor | @loribmt | Apr 24 10:23am
In reply to @tinagibson "Do you know you just put tears in my eyes? Sweet words. I have a dear..." + (show)
@tinagibson

Do you know you just put tears in my eyes? Sweet words. I have a dear friend that I call twice a day like forever. My husband has always been there for me. I do have support. I am truly bless. I need to count those blessings. Never strutted but I like the vision. Saturday Fever just came in my head. lol. You really are kind. I am sending my gratitude for those kind and strengthening words.

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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?

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fortunateoldman | @fortunateoldman | Apr 24 11:06am

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.

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1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Apr 24 11:20am
In reply to @fortunateoldman "I’ve had SLL (same as CLL but predominantly in the lymph system vs. blood) for many..." + (show)
@fortunateoldman

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.

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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?

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fortunateoldman | @fortunateoldman | Apr 24 5:27pm

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.

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