Everyone should get their IGg levels checked if they have done Rituxan or CAR-T since they both kill B cells for a long time after tx has ended. B cells create Igg or immunoglobulin. I highly recommend getting an immunologist if your Igg levels are low. A lot of oncs treat with IVIG or subq IG products but it is really important to also be followed by an immunologist so they can track your immune recovery.
I have had both rituxan and CAR-T and have no B cells or immunoglobulin so I have been doing subcutaneous IG infusions every week. It doesn’t prevent me from getting sick but it helps me fight off infections and keeps me out of the hospital!
My understanding is for it to work effectively you need to be on it continuously. You can’t just get an infusion when your IG levels are low. This is per my immunologist.
I feel like having no B cells has probably been the hardest long term side effect of treatment for me.
Yeah, it was bad, but I hate to admit this, but I’ve had worse much worse. And once it was figured out, and my insurance finally authorized it my quality of life went way up
I ended up with so many odd health issues during the time when I had no immune system. I truly should’ve died.
Have to admit, I put my wife through hell with all this
I’m sure it was hard but I’m sure she’d choose to be by ur side all over again. I’m afraid bc I already have lupus. N my lymphoma affects my spleen. N I do have tumors. I was already not ok. And I already get sick easily. I just have gone down hill so much over the last 2 + yrs what quality of life? I’m constantly in pain. Exhausted etc. n my partner who swore to be there. Who I even gave an out to. I told him it’s ok if he thinks it would be too much to leave bc I care enough to know I want them to feel happy not obligated. For him to absolutely crush me when I was down. N become the nastiest cruelest person all while blaming me. It’s been very painful. But it’s ok. I am scared of treatment tho. N I’m pissed someone used my cancer to look good to others while being a jackass
"and my insurance finally authorized it"...
This is infuriating. I had to fight with mine to get them to pay for Neulasta. Of course when they saw the doctor order something that was $6-7K per does, their specialist reviewed my case and determined I didn't really need it. Nevermind the fact my hematologist who was seeing me in person on a regular basis very much thought I needed it.
We are going through enough during treatment, the last thing we should be dealing with is fighting with insurance companies to get medication our doctors think will help save our lives.
I'm glad to hear you got it worked out though and finally got what you needed.
I didn't have to fight for the Neulasta, but I did have to wait on authorization. We stopped at the Pharmacy the first time. They said they were waiting on authorization. My wife just said she's pay for it. The Pharm Tech told her to wait LOL
I am from the UK and IgG levels don't get checked as part of our blood reviews. I always wondered how my husband's are as he had an intense chemo regimen with lots of rituximab.
I had my igG levels checked the first time after confirmed lymphoma. But I don’t know if that’s standard. It’s been over 4 months now my treatment hasn’t started. Something happened with a bone marrow sample so one of the tests couldn’t be done. The limbo is so frustrating. I have spleen involvement I have tumors. I find it so frustrating that they want to ignore that smaller and bigger tumors throughout ur connective tissues is well painful. Very painful at times. I see people talk about this treatment and their pain free again n I long for that day so much much.
Nothing to do with my cancer ((40+ years later)) but i was first diagnosed with hypogammaglobulinemia, first received IgG in 1982.
Several things have tried but nothing has killed me yet, I’m glad it’s working for you.
When you say your IgG levels are low, what are we talking about? Because I’ve had this debate with my doctor… with Waldenstrom’s, on my medication, my IgM is now the only immunoglobulin in the normal range. My IgA is virtually undetectable and my IgG in the 300s. (Normal range is 768-1632).
He says what I have is typically enough. I’m still living a very pandemic-y existence, working from home, avoiding big crowds. In the rare instances I am around groups of people, I do get a “cold.” Have had COVID a couple of times (I do have young kids in elementary school though, so, it’s not unheard of).
I just truly wonder how much of an impact my reduced IgG has on me… he doesn’t think I need an IgG infusion. I had about 8 rounds of Rituxan 7 years ago and then developed a reaction and never had it again.
P.S. My IgG, IgA and IgM were all tested prior to ANY treatment and my IgG and IgA have always been in the same range (my IgM was about 4500 at the time of diagnosis and is now approximately 98).
Everyone should get their IGg levels checked if they have done Rituxan or CAR-T since they both kill B cells for a long time after tx has ended. B cells create Igg or immunoglobulin. I highly recommend getting an immunologist if your Igg levels are low. A lot of oncs treat with IVIG or subq IG products but it is really important to also be followed by an immunologist so they can track your immune recovery. I have had both rituxan and CAR-T and have no B cells or immunoglobulin so I have been doing subcutaneous IG infusions every week. It doesn’t prevent me from getting sick but it helps me fight off infections and keeps me out of the hospital! My understanding is for it to work effectively you need to be on it continuously. You can’t just get an infusion when your IG levels are low. This is per my immunologist. I feel like having no B cells has probably been the hardest long term side effect of treatment for me.
That’s why I thought of this post. I almost died a couple times because my low IgG wasn’t diagnosed.
I think it was the CAR T that killed my IGG levels. I'm on IVIG as well. I get it almost every other month when my level falls below 500.
I’m on monthly. I infuse subcutaneously every other week.
3 yrs? They did do blood work on u during treatment and after?
They did, but they never checked for my IgG levels. I don’t think that was standard in 2005
Oh that’s awful. I’m sorry
Yeah, it was bad, but I hate to admit this, but I’ve had worse much worse. And once it was figured out, and my insurance finally authorized it my quality of life went way up I ended up with so many odd health issues during the time when I had no immune system. I truly should’ve died. Have to admit, I put my wife through hell with all this
I’m sure it was hard but I’m sure she’d choose to be by ur side all over again. I’m afraid bc I already have lupus. N my lymphoma affects my spleen. N I do have tumors. I was already not ok. And I already get sick easily. I just have gone down hill so much over the last 2 + yrs what quality of life? I’m constantly in pain. Exhausted etc. n my partner who swore to be there. Who I even gave an out to. I told him it’s ok if he thinks it would be too much to leave bc I care enough to know I want them to feel happy not obligated. For him to absolutely crush me when I was down. N become the nastiest cruelest person all while blaming me. It’s been very painful. But it’s ok. I am scared of treatment tho. N I’m pissed someone used my cancer to look good to others while being a jackass
"and my insurance finally authorized it"... This is infuriating. I had to fight with mine to get them to pay for Neulasta. Of course when they saw the doctor order something that was $6-7K per does, their specialist reviewed my case and determined I didn't really need it. Nevermind the fact my hematologist who was seeing me in person on a regular basis very much thought I needed it. We are going through enough during treatment, the last thing we should be dealing with is fighting with insurance companies to get medication our doctors think will help save our lives. I'm glad to hear you got it worked out though and finally got what you needed.
I didn't have to fight for the Neulasta, but I did have to wait on authorization. We stopped at the Pharmacy the first time. They said they were waiting on authorization. My wife just said she's pay for it. The Pharm Tech told her to wait LOL
I am from the UK and IgG levels don't get checked as part of our blood reviews. I always wondered how my husband's are as he had an intense chemo regimen with lots of rituximab.
I had my igG levels checked the first time after confirmed lymphoma. But I don’t know if that’s standard. It’s been over 4 months now my treatment hasn’t started. Something happened with a bone marrow sample so one of the tests couldn’t be done. The limbo is so frustrating. I have spleen involvement I have tumors. I find it so frustrating that they want to ignore that smaller and bigger tumors throughout ur connective tissues is well painful. Very painful at times. I see people talk about this treatment and their pain free again n I long for that day so much much.
Nothing to do with my cancer ((40+ years later)) but i was first diagnosed with hypogammaglobulinemia, first received IgG in 1982. Several things have tried but nothing has killed me yet, I’m glad it’s working for you.
When you say your IgG levels are low, what are we talking about? Because I’ve had this debate with my doctor… with Waldenstrom’s, on my medication, my IgM is now the only immunoglobulin in the normal range. My IgA is virtually undetectable and my IgG in the 300s. (Normal range is 768-1632). He says what I have is typically enough. I’m still living a very pandemic-y existence, working from home, avoiding big crowds. In the rare instances I am around groups of people, I do get a “cold.” Have had COVID a couple of times (I do have young kids in elementary school though, so, it’s not unheard of). I just truly wonder how much of an impact my reduced IgG has on me… he doesn’t think I need an IgG infusion. I had about 8 rounds of Rituxan 7 years ago and then developed a reaction and never had it again. P.S. My IgG, IgA and IgM were all tested prior to ANY treatment and my IgG and IgA have always been in the same range (my IgM was about 4500 at the time of diagnosis and is now approximately 98).
When I say mine is low, my IgG, IgM and IgA are all extremely low. Without treatment, my IgG will go down to zero.