RITUXAN AND COVID VACCINE

Any drug that ends with "mab" is a Monoclonal AntiBody. That is the drug naming convention. Rituximab is one of them. I received only two infusions of Arzerra (Ofatumumab) in a clinical trial. 3+ years later, I am still B-cell depleted. I am also actively immune suppressed due to transplant rejection issues. Neither doctor nor I were expecting a significant response to any vaccine (I have not yet even had my "baby shots" after a 2015 stem cell transplant wiped that protection out.

More recently, after my second Pfizer injection, I developed a very prolonged and unusual immune system response. It 'seems' that the reaction alone does not guarantee the production of antibodies. We simply do not know. What I do know is that it is almost 6 weeks post the second vaccination and my immune system is still upset. Mild fevers on an almost daily basis. Will this continue? What this all means is currently unknowable. But, I do hope to be tested for anti-spike protein antibodies, which would indicate at least some level of protection against the virus. 

The entire world is in an unprecedented experimental phase, with data being collected in an ongoing basis. In the years ahead, we will know much more than we do now, and some of the current opinions may be altered or overturned. No one knows.

I do know that the Leukemia and Lymphoma Society is collecting data regarding response to the various vaccines. In some cases, they cover the cost of drawing and testing blood for the presence of antibodies. From their site: "LLS has reported data from more than 1,400 blood cancer patients enrolled in its LLS National Patient Registry showing that up to 25% of blood cancer patients produce no antibodies against COVID-19 more than two weeks after their second mRNA vaccination."   

Therefore, it seems that only by being tested for the presence of antibodies can one have some knowledge or assurance of protection. 

I am also part of the study. It is scary that 1 in 4 who had Lymphoma and got the vaccine aren't protected even though they think they are. Mine did come back positive for antibodies along with that I had Covid previously. I was extremely lucky because when I got Covid in March of 2020, it was right as my treatment had ended. It looks like my smell and taste will never come back the way it once was, but it could have been a much worse situation.

po18guy said:

Shouldn't we at least get a

Shouldn't we at least get a purple heart or something for all we've been through? I consider myself to be part of the walking wounded. Smell and taste may not return to  what they were, but I suspect that the brain has the ability to readjust our perception so that we are acclimated to the new normals. 

In the end we are all alone.

Yeah, you got to walk that lonesome valley
You got to walk it by yourselves
Ain't nobody else gonna go there for you
You got to go there by yourselves

Joan Baez

Hello!!   I was recently at my Oncologist and she of course highly recommends the vaccine Booster.  She mentioned a study about antibodies and the booster shot. Participants would have their antibodies tested, then booster, then antibodies tested again. i was a bit excited to be part of the study until she pulled up the CDC website and realized for stem cell transplant participants you would have to be within 2 years Of transplant.  I didn't qualify because I'm coming Up on 5 years. I'm 63 so it looks like I'll have to wait on a booster. Sure would like to know if I have antibodies! 

Sharon

Sal0101, have you checked with LLS whether you could still be enrolled?

PBL,

No not yet.  I just joined (or refreshed my old password from years ago) LLS and will have to do some research.  I know for a fact that I will get the booster as soon as I'm eligible.

Sal0101 said:

LLS

PBL,

No not yet.  I just joined (or refreshed my old password from years ago) LLS and will have to do some research.  I know for a fact that I will get the booster as soon as I'm eligible.

I began to sign up for the antibody testing, but was concerned with the wording. Will clear it up with a contact at LLS. It almost gacve the impression that you were crearting an access portal to your health information and asked which potential info you did not want to be included. Hmmm.

I am another currently enrolled in the aforementioned LLS study.  Early results were published this summer and are summarized here:  https://www.lls.org/news/study-leukemia-lymphoma-society-shows-covid-19-vaccine-safe-25-blood-cancer-patients-do-not

Rather than wading through the whole thing, you might find last month's webcast by the Study Coordinator helpful in terms of understanding "what it all means". Note that the last section was added recently and discusses the booster issue.  (Some of the earlier information is dated because the video was made prior to FDA approval for immunocompromised people.) AFAIK, you can still join the study, which is part of the LLS National Patient Registry: https://www.ciitizen.com/lls/?utm_source=LLS&utm_medium=Partner Marketing&utm_campaign=Referral&utm_content=Landing Page&utm_channel=LLS&utm_vehicle=Referral It is my understanding the the medical records sharing is voluntary and revokable at any time, but you should ask them specifically about that if you are uncomfortable about it.

Video link: https://www.lls.org/patient-education-webcasts/lls-covid-19-antibody-research-study-your-questions-answered

Bottom line is that a signifcant percentage of blood cancer patients do not mount a detectable antibody response to the Pfizer or Moderna Sars-CoV-2 vaccines.  Importantly, the fraction of responders varies with disease type and with treatment.  As your oncologist has shared with you, Unbreakable, Rituxan (rituximab) is one of the treatments associated with non-responsiveness. This makes sense, given that the target of Rituxan is B-cells, which are the cells that produce antibodies.  Hopefully more fully parsed data will be available in the not too distant future.  

Your oncologist is probably your best guide in how to approach your vaccination status.

My personal view is that there is still much to be learned, particularly because 1) most of the early data in "cancer patients" is not specific to blood cancer and 2) the early data on "immunocompromised" focused mostly on solid organ transplant recipients.  As mentioned in the video, LLS will be doing T cell analyses and hopefully that will give a fuller picture of our collective immunocompetence.  In the meantime, I have gotten my 3rd Pfizer and am very much on board with "Get vaccinated. Act unvaccinated." I continue to mask in public, avoid crowds, and keep my social distance. 

Additional note:  limited data set on booster studies published by the LLS group:  https://www.sciencedirect.com/science/article/pii/S1535610821004906?via=ihub

ShadyGuy said:

COVID

I think the biggest issue is what level of antibodies offers protection and what stage of treatment the patient is in. By that I mean does Rituxan affect the antibodies after treatment has ended or only while undergoing treatment? My last Rituxan was about 18 months before the first jab. I showed spike protiens but only got a number - 8. I do not know how that compares to people undergoing treatment, those never treated etc. I am still considering whether or not to get the booster. I am traveling internationally which requires loads of testing and so far no issues. Gotta live my life and life involves risks. I have always known we all eventually die, a fact which I suppose makes me more comfortable with risk.

You raise an excellent point, Shady, and I expect that the answer will be that results vary.  If you download the Excel spreadsheet (Supplemental Data) from that second study that I linked, you can see some indication of that, as the data includes time from last treatment. I am 4.5 years out from my last Ritux and remain wimpy in the antibody production department (~9 on the anti-Spike).  I do not expect that to change for me.  But you can see pretty clearly from that data set that others do see improvement with a 3rd shot. 

In Denmark there has already been a large study done on this (I live here and is DLBCL patient). I will spare you the details, but all patients who has received Rituximab in parallel with their Covid vaccinations are now getting a third booster shot. Requirement, they have found out, for it to work is a treatment gap/pause of 4 weeks on either side of the booster shot.