alemtuzamab + rituxan

[greygirl]

anyone have this combo to control CLL growth?

[Jm954 Administrator]

Hi greygirl,

you have certainly had more than your fair share of treatments and lung issues over the last 5 years.

Alemtuzumab is little used in the UK but it does have the advantage of targeting a different CD to Rituximab (CD52 not CD20) so there may be a synergistic effect in reducing your CLL tumour load by using both. Because of your lung issues it would almost certainly be important that you have prophylaxis against fungal infections.

One other point, and I'm not aware of your genetic tests, is that it's effective for patients with 17p del or TP53 mutations.

Monoclonals (MABS) are not so good at clearing bulky lymphadenopathy but will generally clear your marrow and so help your blood counts to recover.

MABS are probably the least toxic of treatments but I note from your previous posts that you did have a bad reaction to Rituximab in the past so I'm sure your doctor will take great care, probably only giving a small dose over many hours to start with.

If you've not had your covid vaccine yet it would probably be good to get that done before you start this.

All the best

Jackie

[greygirl in reply to Jm954]

thank you. I did mention to oncologist that the one targets cd 52. I am seeing a cll specialist and compare the options my oncologist has given me to what specialist thinks. My oncologist knows specialist and believes he will be more aggressive in treatment than he is planning. He usually treats younger CLL individuals whereas my oncologist has treated CLLers who are older than 60. I have been through the different chemo and pill forms and just want to keep cancer growth at bay. I have more options for this by just using a monoclonal antibody or bodies since i have more of a lymph node burden with still stable red blood cells. I don`t want white cells to go beyond 120.000 as that`s when I start to go downhill.

[IRN83 in reply to Jm954]

I have had FCR, BR, ibrutinib and Venetoclax with Gazyva. The only one that worked for me was Venetoclax/Gazyva treatment. I had a 25% dosage of Venetoclax for 12 months and have been MRD negative for the last year. I never achieved this result with any of the three previous treatments. I had a two year wait and watch as the numbers increased each with FCR and BR. I had a major reaction to the Ibrutnib and had to discontinue it. So for me the only treatment that worked was Venetoclax and Gazyva. Again, every person is unique and your experience may differ. Best wishes.

[greygirl in reply to IRN83]

thanks i at this point don`t care about mrd because like you never lasted past 7 months before the cancer growth began again. i was on venetoclax only at 100 mg for almost a year then developed heartburn and sores and tried to go down lower dose but no avail so i wanted to try just monoclonial antibody alone and do a maintaince schedule with no thought of acieving mrd unless it turns out to be the right choice. Well, right now i can`t do anything because i have to have surgry for a blocked tear duct sac

[IRN83 in reply to greygirl]

We are individuals and our bodies respond differently to the different drugs. I ended up in the hospital after Ibrutnib and Venetoclax. The Ibrutnib gave me many numerous bouts with non viral or biologic pneumonia (Fortunately when I was in the hospital with the pneumonia from the Ibrutnib a CT scan showed that I had kidney cancer. They were able to remove part of my kidney. Almost three years later no kidney cancer). The Venetoclax resulted in pneumonia and sepsis. But I recovered and with a lower dose of Venetoclax, I reached MRD. MY CLL was discovered when I was 51, and I started various treatments 12 years ago. I’m rejoicing that I am still here and enjoying life. I take One day at a time! I count and am thankful for my blessings every day.

[greygirl in reply to IRN83]

yes, I was 51 also. Both my father and his father had CLL, his sister Polythemia Vera, my sister ALL. My oncologist along with conference with a CLL specialist and I decided on gazyva alone, I start march 1st. I hope I will have a more normal everyday existence. If it turns out well, I`ll let all know.

[SofiaDeo]

Sorry kind of late responding to this...I did alemtuzumab subcutaneous protocol. I loved it, it put me in an almost 5 year remission. I wouldn't do IV, love the SC protocol. (ASCO came out & said they recommend this drug SC only due to infusion reactions.) My only problem was needing a transfusion, but I was at 7000-7200 ft. altitude & thinking that altitude stressed my marrow too much. This was also before I found an iron supplement that didn't bother my GI tract, and before I was adjusting my diet carefully. In retrospect, I ate very little iron containing foods then.

The last time I tried to do SC, at a new place (6200 ft) not only was the protocol for ramp up not followed, the RN's were doing the injections incorrectly. We did 12 weeks instead of 16 and my remission lasted only a year. I wanted to repeat it correctly (I mean, I could see the drug blebbing up on my skin, they injected it fast instead of slow, I wasn't getting the full dose & I was dopey from diphenhydramine premed & was slow to realize things/react) and they refused. So I found new docs. Now everyone wanted ibrutinib, or venclexta, or combos with them, saying alemtuzumab "too toxic". I am of the opinion a 16 week highly marrow suppresive treatment is easier on my body than a 2 year one, or one I take continuously, but oh well.

I myself would ask for rituxan hycelate as well as the alemtuzumab SC if I could. I do not want to run the risk of infusion reactions if I can avoid it. I had very little problems with correctly done SC injections & would do them again in a heartbeat if I could get approval. At the time I did the alemtuzumab, rituximab wasn't on the market.

[greygirl in reply to SofiaDeo]

I am getting obinuzubmab-gazyva.