CLL - newly diagnosed

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 @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’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.

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?

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.

I am a Canadian[ Calgary] and have been diagnosed with CLL.Will have more tests and will meet with a specialist in August. I am hoping my situation will be a slow motion CLL. I might have jumped then. I came across an outstanding interview with a Dr William Weirda the head of leukaemia at the MD Anderson Clinic . It was centered on treatments . From what I saw Chemo is very seldom used at that clinic. They have a number of inhibitors which seem to very effective in controlling CLL. They also use Venetaclox in conjunction with the inhibitors. If I need treatment and they want to use chemo I will be seeking a second opinion from either Mayo or MD Anderson . May-be I am jumping the gun. Any advice as to the cost of a second opinion this is not covered by insurance. It looks like a full second opinion from MD Anderson would be in the hundreds and wouldn't likely exceed a $1000. Any advice or suggestions would be appreciated .

Just diagnosed with CIL . I live in Canada. I have more tests and a visit with the cancer center in Calgary. I did check MD Anderson on how CIL is treated and found them excellent in giving me the latest on how this cancer is treated. They make clear that chemo isn't part of their approach. They use BTK inhibitors and in some circumstance veneoclox [ not sure on spelling] . Anyways if when I meet with my specialists and he/she says I need treatment and it is chemo I intend to get a second opinion from Mayo o MD Anderson. I will have to pay for such with my credit card. I figure the Calgary center is pretty current on treatments but one can't be too careful. I am 78 . Any input, advise, information or suggestions will be well received . I spend my winters in Texas so MD Anderson is in a better location for me. Mayo and Md Anderson bare both top level centres.

I have a different cancer (stage 4b oligometastatic prostate cancer), but I have found that the Cancer Centre in my big Ontario city is right up to date with the latest treatments I've been reading about at places like Mayo, so I'm optimistic that your Cancer Centre in Calgary will be as well.

FWIW, chemo hasn't been part of my treatment for the past 2½ years — I've had radiation and am on androgen-deprivation therapy (standard) and androgen-reception signal inhibitors (very new). So far, the treatments have kept me in full (medically-assisted) remission for 31 months, and might do so for many years to come. I hope your experience is positive as well. Cancer treatments have improved so much just in the past 5 years!

We opted not to do chemo. Five years ago started on imbruvica. The side effects are brutal. Lots of intestinal air, bowel movements 5 times a day, fingernails splitting, weight loss, etc. But, the cancer is under control and decent life style. Our goal is to avoid chemo. Good luck!

Welcome to Connect, @cmillard. Thank you for sharing your experience with CLL and Imbruvica. It’s great you had positive success with your treatments. As cancer research continues to evolve, the newer targeted drugs offer hope to so many patients.

I know the term chemo can illicit immediate fear in people and it often gets an undeserving bad rap. Chemotherapy, while not always pleasant to go through at the time, can prove to be a lifeline to getting their cancer under control. And interestingly enough, has many of the similar side effects to your experience of your non-chemo treatment. Is Imbruvica an ongoing treatment for you? How long did the side effects linger?