Rituxan

[Vintagemama]

Hi! Today I saw my doctor (I live in asmall town, and he is the only cancer doctor we have.) He said I needed a rituxan infusion, because my immune system is not responding as well as it should with the infusions Iam getting. I have many bladder infections, and he said it would help my lupus and sjogrens too. He wants me to have it as soon as possible, because my numbers were sky high. I don"t know if I should have it done or not. Are there side-effects to be concerned about? My doctor said I have nothing to be worried about, but I'm 5feet tall, and weigh 110 Ibs. Please help!

[cllady01 Former Volunteer]

In what country are you and if in US, are you interested in getting some suggestions for CLL Drs. who might not live in your town, or in the possibility of being able to contact a CLL specialist online who can help to sort your situation for the Dr. you are seeing?

Do you not have a Hematologist in your town either?

[MsLockYourPosts Passed Volunteer]

Do you have a nephrologist (kidney doc) or rheumatologist? It sounds like you need a team looking at your issues. If you lock your post you might get more, and more complete answers.

You also didn’t specify which labs are sky high, or give your current and past counts, including for your IgG. It would be helpful for people to have those, as sky high means different things to different people.

Side effects to Rituxan are usually not concerning.

[AussieNeil Partner Administrator]

With lupus and sjogrens, you have a complex health situation, so would really benefit from seeing a specialist with plenty of experience with CLL patients, specifically those with auto-immune complications.

What numbers are sky high? When it comes to immunity, it's low numbers that are the issue, primarily neutrophils and immunoglobulins. It's also low numbers (haemoglobin and platelets), that trigger the need for treatment, not high numbers. CLL typically causes a high lymphocyte count, but it's rapid doubling time rather than a high number which is the relevant trigger for starting treatment.

I gather you are having IgG immunoglobulin infusions, but they won't help your neutrophils if they are low. All CLL treatments tend to initially worsen your immunity, including Rituxan, which is a first generation monoclonal antibody treatment. There are second generation monoclonal antibody treatments that may be available to you, plus you may do better on another therapy, or even a combination therapy. Rituxan and other CLL treatments may improve your lupus and sjogrens, but as you hopefully now appreciate, finding the right treatment for you is an excellent investment, including seeking a second opinion if you have doubts about the advice you are receiving. With CLL, you generally get your best outcome from your first treatment.

Wishing you well,

Neil

[bkoffman CLL CURE Hero]

A sky high count is not an indication for treatment, though recurrent infections might be. Rituximab lowers immunity so it wouldn't be my first choice in your situation especially during the pandemic though it might help with your auto-immune issues. It's used in rheumatoid arthritis.

Please consider a second opinion with a CLL expert live or virtually. At the nonprofit CLL Society we offer free expert online consults for those living in the USA that you share with your local hematologist: cllsociety.org/cll-society-...

Stay strong, we are all in this together,

Brian

Chief Medical Officer and EVP, CLLSociety.org

[Cllsller]

I had great success with Rituxan. However, I think you should see a cll/ hematologist/oncologist no matter how far away. Please look into it.

[betsyv]

I am getting these infusions - started every week then every 2 weeks and now every 2 months. Working well for me but I just have CLL and a heart attack because white cell super high 153,000 and red so low heart was starved. Had 3 blood transfusions and then started infusions. I live in a smallish town but trust my doctor.