return of immune system

[Cllinmaryland]

I achieved remission in May 2022 after a year of O & V. My immune system has still not returned and I’ve thankfully been given IVIG infusions to help me out. I was told my immune system would return one year after the completion of Obinutuzumab infusions and those ended in September of 2021. Has anyone had the same issue? Thx.

[AussieNeil Partner Administrator]

Hi Cllinmaryland,

Your question is about one specific function of the immune system, namely the adaptive part where B lymphocytes mature into immunoglobulin (antibody) producing plasma cells. Having low antibody blood counts (IgA, IgG and IgM are the 3 usual measured types) is common with CLL. Anti-CD20 monoclonal antibody treatments such as obinutuzumab and rituximab can suppress the production of new B lymphocytes for a year or more after the last infusion - hence the advice you were given. Other measures of your immune system - neutrophil and other white blood cell production, including T cells, can also take a few months to recover after treatment. I presume these are now good?

With respect to your question, full recovery of plasma cell production of antibodies after treatment by older chemoimmunity treatments (BR and particularly FCR) seems to be more of a problem than is the case with the newer targeted therapies. Unfortunately full immunoglobulin production recovery after newer targeted therapies is not common, unfortunately. CLL researchers see achieving a breakthrough in post treatment immune system recovery as the last big challenge towards providing a full cure for CLL

This recent post is also relevant healthunlocked.com/cllsuppo...

Personally, I began on IVIG then switched to subcutaneous IgG, a few years before my first CLL treatment. My already very low IgA and IgM dropped during treatment to levels barely detectable. They did eventually recover to around the very low pretreatment levels - but sadly no higher. I'm very appreciative that I'm still prescribed weekly subcutaneous IgG infusions to maintain a protective IgG count.

Neil

[Cllinmaryland in reply to AussieNeil]

Thank you so much for your thorough reply and explanation. It was incredibly helpful and also disappointing, but yes, my wbc and neutrophil levels are all good presently. I’m grateful my insurance company has kept approving the IVIG as it appears it could be needed from now on. I appreciate your help!

[beanlake14 in reply to AussieNeil]

I am interested in your subcutaneous. I get IVs every 28 days, have for 7 years, and the old veins are getting tired. I have considered discussing this with my doctor. They like the monthly blood checks which I could still do. Should I switch because this is a forever thing for me.

[AussieNeil Partner Administrator in reply to beanlake14]

I appreciated being able to save my veins by switching. I was part of a trial, where we were given training in self administration. None of the trial participants wanted to switch back.

See healthunlocked.com/cllsuppo...

Neil

[Awksom]

For what it is worth, I am on the BOVen trial with Z, O and V. After I reached uMRD and got off the three drugs I was totally immunocompromised for about 12+ months. In addition, I got shingles and was on acyclovir for that time to prevent reoccurrence until my cells came back.

[Flute117]

I finished O+V treatment in October 2021 and my IgM was finally back in normal range when checked last month - January 2024 - three years after completing the Obinutuzumab infusions. It had not been checked in about 6 months so it may have been back a little sooner, but still took quite a while.

[Cllinmaryland in reply to Flute117]

That’s a bit of hopeful news! Thank you! I wish you well!

[Motoli in reply to Flute117]

My wife was treated with V+O frontline. Reached UMRD at mo. 11, and treatment was stopped in October 202O. Her Ig A and Ig M were extremely low, but M is back in low normal range (3.5 years after treatment stopped), and IgA is slowly but steadily creeping up. She was receiving IgG support every 3 months, but now she gets it every 5-6 mo. All blood "parameters" are in normal range. There seems to be light at the end of the tunnel.