Kimsome

[Kimsome]

Hello all of my CLL friends!!

Happy New Year as well!! So, I was diagnosed with CLL in 2010 when I was 45 year old woman.

Went through aggressive chemo, FCR.

In my case the sickness now supposedly in remission but continued to make me critically ill even when it was over.

If fact, I was in and out of ICU like a revolving door. Intubated, forced oxygen, sepsis, respiratory failures, and various types of pneumonia. Finally the CDC stepped in and helped me find an oncologist who would put me on IVIG to boost a broken immune system.

Is this IVIG a cure fo some people?

Yesterday my blood work still looked great.

But now the IVIG keeps me down a week or two, maybe I’m too out of shape here but getting back on my feet has been very difficult. Just wondering how many of you take IVIG and if you have side effects also, does it get easier and cure CLL??

Thank you in advance for your help in this matter!!

Kimsome

[JigFettler Volunteer]

Sounds very tough! Scary stuff. I've just completed FCR and feel v well, strong, cycling fit.

I do know my Igs are low, so far no infections. I do take scrupulous care. Gloves, alcohol hand rubs, own towel, avoid crowds, don't shake hands, stopped hugs and kisses, screen all who visit my home. Tedious, drives the family nuts.

Then the cat sneezes and I think to myself, can I catch cat flu?

I've asked about post FCR immune deficiency, like CLL, heterogeneous, idiosyncratic, fluid... and even knowing the levels, clinical course cannot be predicted.

IVIG is important, so are physical precautions, and responding promptly to signs of infection.

Go well good friend. Seek joy.

Very best wishes

Jig

[MsLockYourPosts Passed Volunteer]

Kimsome - I'm sorry that it took so long and such extreme measures to get you approved for IVIG! It is not a treatment for CLL, but rather an infusion to boost your immune system to help you fight off infections. Your doctor probably tested your IgG level before starting IVIG and monitors it now. Ask for copies of those labs and all of your other medical records and start a file so you can see what is happening. You won't understand everything at first, but it is trends over time that are important, and you will start to see those.

I started IVIG in 2003 when I was diagnosed. My IgG was @ 250 (low normal is around 650 - 700, depending on the lab) and I was sick all of the time, but fortunately did not go through the extremes you went through. For me it was a Godsend. I have gotten monthly, and recently bi monthly, infusions and will probably get them for life, but I have been only mildly ill a handful of times in the last 17 years. My CLL has been in remission for most of that time, so treatment and IVIG gave me back my life. I don't have problems with reactions.

Have you discussed your reactions with your doctor? Some people react to particular brands - I developed reactions to one. Just changing brands can make a difference. It isn't a matter of one brand being better than another, just that different people react to different brands. For others slowing the infusion rate or changing pre meds can help. I thought I was developing a reaction to a second brand. It turned out that I was reacting to the Benedryl pre med, so now I get Claritin instead. Some get steroids, while others don't tolerate them.

A newer way to also discuss with your doctor is home infusions. I don't know much about this approach, but others here are very happy with it. Once trained you do your infusions at home, I think weekly. It means getting a smaller dose more frequently, which can help with reactions and keep your level more constant. I'm sure someone who uses that approach will give a more detailed explanation.

I hope that once you find the right approach IVIG changes your life for the better as much as it has mine. Let us know what your doctor says about making adjustments and figuring out what is causing you to feel so ill still. There are lots of knowledgeable people here to help you.

[AussieNeil Partner Administrator]

Hi Kimsome,

GIven that you feel flat for a week after your IVIG, I highly recommend you ask about subcutaneous IgG as MsLockYourPosts suggested. There are less side effects or they wouldn't let you do it at home! Here's my experiences: healthunlocked.com/cllsuppo...