Life or death... Or IVIG.

[Kimsome]

Thanks to you lovely people and great support group advice, I have my first IVIG INFUSION in two days in Portland, Oregon.

I had FCR six years ago....

Cll/SLL Stage 4, Rai II. My FCR was stopped by the 5th month because I was so very toxic.

Very aggressive FCR and I just never recovered.

Always had flu like symptoms, so bad to keep me in bed. Then singles, pneumonia, skin cancer (melanomas) in 5 different places. But the real blow was THE MANY infections... a a bad case of pneumonia. It kept me in the hospital the week before Christmas. Santa did a lot of ordering on Amazon prime, ordering my kids presents just in time.

Then one night in May, a few months ago, I went to bed with a sore throat and woke up on a ventilator in ICU. My husband woke up at 5:00 a'm and thought I sounded like I was drowning and got me to ER just in time. About an hour later, they believe I would have been dead. I made an awesome come back. Then went to my check up and my oxegen level was at 70, back to the hospital and more antibiotics, oxygen and went home. Finished antibiotic then in a few days my husband got up and found me acting very strange... He drove me to our local hospital, my oxegen level was then at 50 and I was back in ICU. Thankfully our providence disease control doctor came to find out what was going on. He said I needed to try IVIG, but my oncologist said my IgG levels weren't low enough. So our disease control Dr. gave me the name of another great hemotologist, lymphoma, oncologist right here in Portland. He did a bone marrow biopsy. I HAD ZERO CLL. Very low on iron. STILL, He said let's give this IVIG infusions a shot at helping you have a life.

I was shocked and amazed. I don't know why, if I am

In remission I feel so rotten all of the time. My last visit to my last oncologist said a low level of CLL was back in my blood, this new oncologist found NONE. God must be listening to the prayers of my friends, husband and my children.

Anyway, thank all of you that suggested IVIG. I don't know why I am so sick. But heres to IVIG working to ward off bacterial infections in the hospital and life and death hanging over my head at 51. Have you every heard of someone in remission so sick, one illness after another?

[Anilbhard]

I am CLL patient since 2001, and been on FC in 2003 , and then aft remission in 2013 in BR and in 2016 on R-cVP and Rituxine. But from Jan 2017 have started Ibnutrib treatment.

Yes, I have been on IvIG since past two years when my level dropped to dangerous < 75 level and have recurrent infection in lungs of pneumonia, followed by Fungal infection of lungs and again water in right lung.

Now since May , am taking monthly dose of IvIG and now don't have infection since past 2 months. Amen.

Now my level is ard 550.

Take care

[Kimsome in reply to Anilbhard]

Thank you for your reply! Do you know what dose IVIG? Mine was suppose to take six hours and I was done in an hour. I thought maybe the first dose is low???

[Anilbhard in reply to Kimsome]

I am given 5 ml x 6 as per weight. Now first IvIG of 5 ml is given over 3hrs ( after a dose of Avil injection) , and thereafter rest of all five doses are given each hour. Meantime they keep a check by Nurse for BP, temp etc.

All the best

[Bubnojay]

Hi Kim

I am at a loss to find the words to reply to you who has suffered so much at a young age. Your hubby must be going frantic to see you suffering so many setbacks. You don't mention your neutrophil level, though I'm guessing this must be very low.

I wish you so much good fortune with the ivig injections, they have been life changing for some here in the community. I hope they change your life for the better too, however, do follow all the advice PaulaS and other have posted to stay as infection free as you can.

Making your post private may generate more response, as many don't want their replies appearing on every search engine out there.

I wish you a future of better health and happiness, you too Anilbhard.

Bubnjay1

[wmay13241]

As part of her NIH CAR-T protocol my wife gets an IVIG infusion when her IgG falls below 400.

[Kimsome in reply to wmay13241]

Do you happen to know what dose she gets and how long it takes?

[wmay13241 in reply to Kimsome]

Based on her weight, she gets two bottles of Gamunex C The infusion takes about 3.5 hours.

[W00dfin]

3-4 years into WW, after my CLL diagnosis 2003, my oncologist started me on IVIG because of frequent colds, etc. If he did an IgG level he never mentioned it. It was only During the cold/flu season at first. Even then I still contracted multiple infectious illnesses including pneumonia (nothing like yours), also shingles and MRSA at the same time, hand and mouth disease, etc. So I was put on IVIG year round which helped greatly until I contracted sepsis in 2011 leading to hospital, FCR and remission. My oncologist tells me that IVIG will be monthly for the foreseeable future. I used to feel inconvenienced by the procedure but the positive results made me too thankful to feel that way.

[Kimsome in reply to W00dfin]

Thank you so much. Do you know your dose? Mine was rather low so I thought Ide check on some of you. Yes, sepsis is no fun! But I love that I got my first infusion yesterday. I guess I was thinking Ide be put of bed hiking today, but I'm very tired. Did you notice more energy? After time and can you tell when it's wearing off?

[AussieNeil Partner Administrator in reply to Kimsome]

In Australia, where IVIG is given every 4 weeks and subcutaneous IgG self administered weekly, dose is initially determined by body weight (grams of IgG per kilogram of body weight), then adjusted after assessing the degree of response (the boosted IgG level). The available bottle sizes also influences the final dose, with the bottle sizes also set by the IgG concentration. In Australia, the IgG concentration for IVIG changed this year from 6% to 10% and it is 20% for subcutaneous delivery (available in 1, 2, 4 and 10g IgG doses, i.e. 5, 10, 20 and 50g of liquid respectively). For subcutaneous IgG, the dose administered in trials checking for equivalent efficiency to IVIG was 0.12g/kg body weight per week.

[W00dfin in reply to Kimsome]

My dose has been 30 grams every 4 weeks since I started paying attention to the dosage. The procedure takes about 3 hours. I have not experienced any noticeable aftereffects, positive or negative, from it.

[Kimsome in reply to W00dfin]

Ok, I get 25, I thought the nurse said miligrams. It turns out to be 1 bottle and then a tiny little bottle fo finish. BUT I thought it was based on weight... And I have to admit I am heavy right now. I eat way too much sugar and inactive because of sickness. I mean everyone goes out but me. So I am hoping to be hiking soon. So, do you get I bottle or two the same size?

[W00dfin in reply to Kimsome]

I get 20 and 10 grams bottles. I have a friend with lupus whose treatment includes larger IVIG dosages. She does have improved energy and wellness after her IVIG.

[mjve04]

I certainly hope that IVIG helps to bring you back to a new normal, one with far fewer infections and much more energy.

I've been on IVIG off and on since the spring of 2010. (Did 6 rounds of FCR in 2006) IgG level at the time was 255. It's been as low as 130. But I started getting more infections after coming out of remission and I was changed to SCIG (Subcutaneous IgG) that I perform weekly at home, starting in the fall of 2015. My health has been on a much more even keel since then. If you ever need to go to weekly infusions, you will need an immunologist (at least in the US) to put the plan into place.

[Kimsome in reply to mjve04]

Thank you for your kindness. When you get IVIG what dose do you get? I have been very tired, but I am ready to wake up and turn into speed racer... Does that happen. Instead of having the flu like symptoms or getting sick all of three time, you can be twinkle types?

Then for three weeks until the next IVIG? I get one bottle and a little tiny bottle to finish. I thought it would take six hours. And I finished my pop cycles and was done. The nurse said it was a lower dose then she'd normal administer.

[mjve04 in reply to Kimsome]

Shucks, that's not something I kept a record of.. I'm thinking it was 32 or 36 grams.. There's a standard calculation based on your weight. Now that I'm on weekly SCIG instead of IVIG, I do 9 grams a week. (SCIG dose has a standard calculation based on the IVIG dose grams, divided by 4, plus some specific amount) IVIG use to take me about 4 hours not including travel time to the infusion center, SCIG is under 2 hours a week, though with prep before and cleanup after, maybe closer to 3 hours total. I take a tylenol and benadryl as 'pre-meds'.. the benadryl makes me sleepy. I often nap and don't get too much accomplished other than the infusion that day, unless I get stuff done before the SCIG infusion.

The amount never fluctuated.. It was based on my weight when I started IVIG treatment, and never changed, no matter if I gained or lost weight. I suppose if it hadn't kept my Ig G level within normal range, they would have adjusted it. But that didn't happen.

Ask the doctor how they are calculating your dosage and what it is. Best method to see if dosing is right is to see what your Ig G level is before your next IVIG dose.

[Kimsome]

So sometimes 20. Then sometimes just 10? Or 30 all together ❤?

[W00dfin in reply to Kimsome]

All together