Want to connect with others with Splenic B cell Marginal Zone Lymphoma

I understand many folks have minimal difficulty with rituximab and/or infusions..... but not me. They administered the pre-medications, but when the rituximab started, I had reactions and it was stopped in 15 minutes. More meds were given, and a second attempt had similar results. More meds were given and eventually they were able to continue and after 8 hours it was completed. Pretty bad body aches through the entire time. I sure felt better shortly after it was completed as well as the past couple days. The second infusion is supposed to be easier, so am looking forward to a better day on Tuesday.

Hi Stan,
I hope the Rituximab infusions will take you back to a better health status.
I recently had Covid and was given the Paxlovid to assist with my recovery. After a month I'm finally feeling as if I'm back to my normal energy level.
I will be thinking of you on the 23rd and hoping all goes well with your infusion.

Lori,
Thank you so much for the excellent information re: Evusheld, Covid vaccination, Influenza vaccine, and Shingrix. I suppose he 2-4 week applies to each.
I am truly grateful for your interest and prompt responding
Judy

@jam5 An article from the FDA in February 2022, said that Evusheld might not be protective against the newest variants. However now the latest info, May 2022 from Astrazeneca, the manufacturer of Evusheld, after more research, states it to be fairly promising against the newest variants.
https://www.astrazeneca.com/media-centre/medical-releases/evusheld-long-acting-antibody-combination-retains-neutralising-activity-omicron-variants-ba4-ba5-according-new-study-university-oxford.html
This is the article from the FDA (June, 29 2022) regarding dosing for Evusheld. https://www.fda.gov/drugs/drug-safety-and-availability/fda-authorizes-revisions-evusheld-dosing

From sifting through several articles, the current consensus is that Evusheld is best given 2 to 4 weeks after a Covid vaccination. There is no supporting articles from the CDC or FDA that I could find giving exact timing on when Covid shots can be given after having the Evusheld treatments.
But one credible source, The American Academy of Asthma and Immunology, has 2 articles regarding the timing and feels that waiting the same period of 2 to 4 weeks of the Covid Vaccinations.
https://www.aaaai.org/Allergist-Resources/Ask-the-Expert/Answers/2022/evusheld2
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https://www.aaaai.org/Allergist-Resources/Ask-the-Expert/Answers/2022/evusheld
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So basically, which ever you decide to have first, a respectable waiting time of 2-4 weeks after either one, before receiving the next, is a good rule of thumb. I was asked to wait 4 weeks between shots by my oncologist/hematologist
https://www.cancertherapyadvisor.com/home/cancer-topics/hematologic-cancers/blood-cancers-covid-19-vaccine-booster-evusheld-improve-protection/
The annual high dose influenza vaccination is generally a must-do on all of our lists. So unless you’re being told not to by your doctor, the flu shot is a yes.

Shingrix…that is a question for your doctor. Any blood cancer patient runs the risk of getting shingles. It is not a live vaccine and is suggested for everyone over 50. Especially anyone with a weakened immune system. But check with your hematologist’s recommendation before any of these.

Are you also up to date on the pneumonia shots?

Does Evusheld protect one from the Covid-19 variants B4 and B5?
What should be given first and how long apart should the Evusheld and the new modified Covid booster expected this Fall? How about the high dose influenza?
Is Shinrix recommended for B cell Lymphoma patients? What about timing?

Hi Stan, I hope your treatments go as well as mine did. I too had a series of Evushield injections. I was given the pair of injections (one in each buttock) several months apart with no ill effects.

I go back in September to see my doc after labs have provided the bloodwork results ahead of that visit to see if my SMZL is still in remission. Prayers for us both to enjoy as much of our lives as we can.
Sally

Update, I will be getting 4 weekly Rituximab infusions starting August 23.
The addition of recent events, shortness of breath, accumulation of chest fluid, lab results , prompted the decision to leave my SMZL "watch and wait status" and start treatment. Covid is a concern and will be getting an Evusheld injection, too. Also planned are labs at each infusion week, a CT in two months, and bone marrow biopsy in 5 months. Hope this all goes well.

Thank you for that information
I certainly appreciate your interest and time

Well, that wasn’t much of a help for you! In this case, a pharmacist will be the best person to contact.
Have a list of your husband’s meds and his conditions handy, and then at an off-peek time during the day, give a call to the pharmacy where he is a routine customer. You can also ask for a consultation time too! We’ve done that. The pharmacist returned our call after reviewing info we sent.
That way you’ll have more of an idea of what meds might be available should your husband (or you) contract Covid.

There are treatments for immunocompromised people with Covid other than Paxlovid, which is an antiviral.
There are mono-clonal antibody treatments which are quite effective. But I agree with you about wanting to be prepared and in this case, since you aren’t getting answers from all those other sources, a Doctor of Pharmacology will be able to help point you in the right direction. ☺️

Thank you for the article-very interesting
I inquired with the IWMF, IMM and the cardiologist, and with the oncologist's NP.
No definitive answers .
Judy