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Want to connect with others with Splenic B cell Marginal Zone Lymphoma
Blood Cancers & Disorders | Last Active: Nov 15 7:18pm | Replies (329)Comment receiving replies
Renee,
I've lost track of some posts and replies but wanted to check in and also ask a question of you and the group. I had great results from my bloodwork of late last year, and just had another checkup. Unfortunately, my bloodwork coincided with the trail end of a cold and my numbers were slightly elevated. (I had tested negative for Covid but had sore throat, slight cough, and tiredness.) My ocologist mentioned an ivig infusion, telling me he has a "low threshold" for that procedure. My proteins aren't at scary levels but I could tell he was suggesting I could have the ivig to bolster my numbers. We left it that if I have recurring colds or other symptoms I should have it done. I know that I've been trying my best to live healthy and manage my immune system without any infusions, and that saying yes is acknowledging this is a cancer that I have little control over. (That's a tough realization for me.) However, I realize this is a resource I probably should take advantage of, especially with Covid still lurking. Can anyone offer insights about side effects or other issues with ivif? I am due for my second Covid booster - sounds like side effects are similar to covid shots - I always end up with flu-like symptoms. Beginning to dread that about every issue but think I need to buck up and deal!!! Hope you are well and your health is steady! Laurie
Replies to "Renee, I've lost track of some posts and replies but wanted to check in and also..."
Regarding covid vaccinations, I received my second covid booster Wednesday and for me was less reaction than the first booster. Just a tiny bit tired or ill on Thursday. They said my first booster was a full dose and the second booster was a half dose. All have been Moderna. During my Wednesday Hematology appointment, we talked a bit about my immune system. With SMZL they know my immune system is less than normal and encourage getting covid boosters when available as well as other approved immune boosters, especially since covid is around. Some treatments are new and based on drug availability and qualifying per CDC and State dept of health guidelines.
Laurie, I'm not familiar with term ivig infusion, so cannot help you there.
With respect to my SMZL, the bone marrow and blood tests reconfirm the June 2019 diagnosis, with no major changes. Since last October, it has progressed slightly and the spleen is a bit larger. My platelets are holding steady at 114, White blood count was up a bit to 13.4. I will remain on watch and wait.
Not SMZL related but I also had an Oncology appointment. There is a bit of fluid in the chest but they feel this is from my Nov. surgery. Also is a lymph node or nodule that is a bit larger to follow up on. It is not in the lung itself. All in all, were pretty good reports. Stan
Laurie, I am new to this communication platform for those of us diagnosed with NHL, SMZL, and don't know what ivig infusion is. I had 4 rounds of Rituxan in January that helped reduce the size of my spleen (was twice its normal size). I have had my 4 COVID shots, Pfizer, as well as 2 rounds, one month apart of "Evushield" a new drug, recently approved by the FDA for cancer peeps like us, that are immunity challenged. Overall, I feel lucky as I have had little or no reaction to the shots.
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Laurie,
Nice to hear from you. I do not know anything about ivig infusion. I have an appointment with a hematologist at Mayo next week. If I learn anything I will let you know.
I am also going to get a booster soon and wish I could plan it around raining weather because the last one knocked me out for a couple of days.
Overall I am doing better -especially the mental game. I went to Portugal for a couple of weeks and I think that really helped me to focus on something different and kept me active. Lots of beautiful walks and hikes.
I hope you get you kayaking soon!!! I hope to this weekend. Enjoy the day. Renee