1. < Blood Cancers & Disorders

Dr wants to add immunoglobulins

Posted by zeedee1 @zeedee1, Mar 23 10:56am

Over a year with Waldenstroms diagnosis. They now think I’ve had it much longer On Ruxience, prednisone and Imbruvica. Igm coming down too slowly but igg almost non existent. Dr got ivg approved. Side effects? Is it given with since operate. Hoping to take a trip next month to see first great grabby but that may be off. Is therevfunding available for procedure? So tired not sleeping

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zeedee1 | @zeedee1 | Mar 29 10:28am

Any idea how many iinfusuisons will be needed. Then center already scheduled me every three weeks for a few months a week apart from my other infusions. Wonder if I will still need the Imbruvica and prednisoneSide effects worse for the oral meds than infusions. Wonder if the I’ve will help,bring down my I’m also..?

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1 reply
zeedee1 | @zeedee1 | Mar 29 11:03am
In reply to @kayak4me "I wanted to add that my nurses recommended drinking coffee afterwards. My sister and I would..." + (show)
@kayak4me

I wanted to add that my nurses recommended drinking coffee afterwards. My sister and I would go out for a meal when my infusions were done and a big cup of Joe was always ordered!
Laurie

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Will definitely try it! Thanks🖤

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bettycll | @bettycll | Mar 30 8:37am
In reply to @lowtltct36 "Please teach me the true meaning of :: igm, igg, ivg, CLL, IVIG, AFib. What are..." + (show)
@lowtltct36

Please teach me the true meaning of :: igm, igg, ivg, CLL, IVIG, AFib.
What are these items? What for?
Which one to use for increasing Platelets to the Low Normal Value of 150 K counts per cc?
Any supplements, nutrients, foods for daily consumptions to raise my platelets? Please advise and share your knowledge. Many grateful thanks to you and to Mayo Clinics..

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Sorry I am just getting back to you. To answer some of your questions: CLL is Chronic Lymphocytic Leukemia - my shock diagnosis about a year ago. IG stands for immunoglobin, which is a human blood product given to help raise the immune system. With CLL (and other conditions, the immune system can be weakened causing a person to be more susceptible to infections. So, my understanding is that the various "IG's" refer to how the immunoglobin is administered. IVIG refers to intravenous infusions; that is what I get. To my knowledge, IVIg infusions do not raise platelets. AFib is atrial fibrillation, where the heart beats erratically. Unfortunately, I also have that condition, which is why I am on blood thinners (to prevent a stroke) because AFib is likely to cause blood clots. I am sure your doctor will advise on how to raise your platelets. Good luck!

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bettycll | @bettycll | Mar 30 8:40am
In reply to @zeedee1 "Any idea how many iinfusuisons will be needed. Then center already scheduled me every three weeks..." + (show)
@zeedee1

Any idea how many iinfusuisons will be needed. Then center already scheduled me every three weeks for a few months a week apart from my other infusions. Wonder if I will still need the Imbruvica and prednisoneSide effects worse for the oral meds than infusions. Wonder if the I’ve will help,bring down my I’m also..?

Jump to this post

I don't know how many infusions will be needed. My doctor started me off with three (four weeks apart), then added another three (also four weeks apart). Again - another three. Each time I think I am finished, I learn that I am not.

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2 replies
bettycll | @bettycll | Mar 30 8:43am
In reply to @kayak4me "I wanted to add that my nurses recommended drinking coffee afterwards. My sister and I would..." + (show)
@kayak4me

I wanted to add that my nurses recommended drinking coffee afterwards. My sister and I would go out for a meal when my infusions were done and a big cup of Joe was always ordered!
Laurie

Jump to this post

Wow! Thanks for the information! No one ever suggested that I drink coffee after an infusion. Unfortunately, I also have AFib which forbids caffeine. So, my coffee will have to be decaffeinated!

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zeedee1 | @zeedee1 | Mar 30 9:56am
In reply to @bettycll "I don't know how many infusions will be needed. My doctor started me off with three..." + (show)
@bettycll

I don't know how many infusions will be needed. My doctor started me off with three (four weeks apart), then added another three (also four weeks apart). Again - another three. Each time I think I am finished, I learn that I am not.

Jump to this post

That seems to be the case as
It was with my retuning also😌. Thanks for the heads up.

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mermaid7272 | @mermaid7272 | Mar 31 9:51am
In reply to @bettycll "I don't know how many infusions will be needed. My doctor started me off with three..." + (show)
@bettycll

I don't know how many infusions will be needed. My doctor started me off with three (four weeks apart), then added another three (also four weeks apart). Again - another three. Each time I think I am finished, I learn that I am not.

Jump to this post

I had to have quite a few IVIg infusions for another problem.

just wanted you to be aware that they are very pricey--- $15,000 a pop!

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zeedee1 | @zeedee1 | Mar 31 10:24am

Have you gotten help from a non profit?

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