IVIG CURE?

[Kimsome]

HI EVERYONE!!! I know this is a difficult time for folks and I pray for my CLL friends, I wanted you to know.

My question after a brief explanation. My user name is Kimsome. I was diagnosed with lymphoma SLL/CLL in 2010 when I was 45 year old female. I had aggressive chemo with a mix of Fludara, Cytoxin and Ritoxin. It was not fun but I stopped after 5 treatments. It knocked my white blood cells back to normal. But, I was in the hospital every few month with everything from pneumonia to respiratory failure, sepsis with a blood oxygen level of 50. Oh, and those shingles were not fun. Great blood worth but many hospital stay and even work up on a respirator. The Center for Disease Control sent me to an Oncologist who then started IVIG in 2018. It's once a month and about 30 mg. I have never been in the hospital since, my blood work is normal and the doctor even drilled in my hip to find NO sign of CLL. I still don't feel good but I am forcing myself to go... and go some more. Is IVIG the magic ticket? In your opinion am I cured? I see many of you living with CLL for many years and I just seem like I have great blood work and gained too much weight. Also, does IVIG make anyone sick the weak after? Thank you.

[AussieNeil Administrator]

Hi Kimsome,

Thanks for giving hope to those of us who have been treated like you with FCR (Fludarabine, Cyclophosphamide and Rituximan to give the unabbreviated names).

Now that we have patients approaching 20 years remissions after FCR treatment, it is well known that patients who are IGHV mutated have around a 55% chance of an indefinite remission or effectively a cure. CLL specialists are reluctant to say the word cure, because CLL has a reputation of (nearly) always returning. However, with FCR, long term studies have shown that if you make it to 7 years after FCR treatment without relapsing and you are IGHV mutated, you don't see CLL return.

The IVIG is effectively an immunity transplant from blood/plasma donors. It supplements the shortfall of IgG antibodies/immunoglobulins that is a legacy of your CLL and treatment. CLL suppresses plasma cell production of antibodies and FCR kills off all B-cells, the precursors to plasma cells. It is a major remaining goal with CLL treatment, to find a way to selectively kill off just CLL cells and restore full immune function, as all current approved treatments kill off our good B-cells as well as our CLL cells.

Thanks for sharing your fantastic news!

Neil

[Kimsome in reply to AussieNeil]

I just appreciate all of you who are so dedicated to making life better for those who have CLL or those with loved ones living with the unending questions we all face along the way.

Every year I personally see the progress in treatment, in expert research and in hope from what was such a mystery a decade ago.

This site provides unprecedented support. I am so thankful for all of you. Especially you Neil. You are always there to educate and lift us up in the process.

Thank you.! This ride is anything but over but I am thrilled to hear these stories of overcoming.

Each time I have new blood work or treatment I feel the chilly silence of what I may be blowing up in my mind. The more I learn the more I see this multifaceted illness thatCan take a toll on emotions. It used to take me to a dark place at times.

It’s here I so often find the light.

Sometimes this illness can be crippling and then I pop on this website and find comfort, support and reassurance. CLL and all the questions we struggle with are being answered by very specialized hematology experts and doctors who unravel the puzzle with news of advancements and in some cases a “cure “. I pray that’s your case.

Thank you for helping me cope by being there to intervene in a mind full of questions and and some runaway thoughts both real and unreal.

How great we can come together and be strong as one.

[Ellieoak]

I agree with Neil, it is an awesome treatment. I do mine every week at home but I only suggest it if you can handle it. I’ve been doing this since 2014 and haven’t been sick since. Good luck and stay safe. Anna

[Hidden]

Hi Kimsome,

My specialist said that about half the people having IVIG noticed only a little improvement in their well being, the other half, like me, were delighted by the positive effects. People are given IVIG for different reasons. Mine was given because in the eighteen months after remission I felt lousy and was hospitalised five times because infections had run amok. Since having IVIG for over a year I have had no infections, well until two days ago and I've started a wooser of a cold. Generally I feel better emotionally and I have more energy.

IVIG does not seem to prevent CLL returning. Mine returned about 8 months ago and was treated with retuximab and steroids. I'm also back on one tablet a day of Ibrutinib.

Stay well,

Peter

[Alan20]

Hi Kimsome

With regards to the feeling sick for a week after IVIG, I suggest you try slowing down the speed of the infusion, if I go too fast I feel very rough. It also helps if I make sure to drink lots of water before and during the infusion.

If this doesn’t work, talk to your team about changing the product, there are several options and a different one might be better for you.

[DelrayDave]

IVIG reduces likelihood of other infections. For me it was chronic bronchitis. Over a year of coughing. I get IVIG every 4 weeks. No more bronchitis. Also no more colds or pneumonia. I am tired a few days after each treatment. But at 80 on ibrutinib, I'm tired anyway. Good luck.