I was dx with CLL in 2015 and have been on w& w since. Most of the time I feel fine and I don't remember I have it. My WBC climbed by 1000's with every checkup since then, but not rapidly enough to warrant treatment. Then, mysteriously, for the last year ( one checkup every 4 mos), my WBC started going down. By 1000's. It's still abnormally high but the decrease is notable and my dr can't explain it. Other than my platelet numbers that keep decreasing, my other numbers are basically ok. However I started spending a great deal of time with my little grandkids (ages 1&3) at this same time and blame them for the constant colds coughs etc that I've had constantly since last Sept. When I complained to my Dr about not b ale to get rid of these colds, he decided I was a good candidate for IvIg infusion therapy to try and boost my resistance. I had my first infusion in Dec and within about 10 days my cold was almost completely gone. So wonderful. My IgG serum level rose from the 100's to almost 600! My WBC rose too, but not significantly. Had my 2nd infusion about 10 days ago and felt fine until 2 days ago when the exact same damn cold symptoms reappeared and have knocked me back. I know the infusions are intended to help my body fight, not necessarily be a cure but it's disturbing to be sick again so soon.
My questions are
Has anyone experienced a similar continually decreasing WBC and received an explanation?
Does the fact that I've come down with this same crap cold mean that the second infusion didn't work?
I've searched the forums for IvIg therapy info but haven't found answers to these questions. I'd welcome any and all comments. Thanks.
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Norcaldoglvr
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WBC changes especially when fighting infection the numbers increase and can decrease when you get well. The ivig will be likely a globulin dose of 40g in 400ml to boost your immunoglobulins. The dose fades and is gone after about 3 weeks approximately. In your case your Ig may be low enough to get infected a couple of weeks after infusion. Your reducing platelets are most likely to crowding out of healthy cells in the marrow by call. However if the count is dropping rapidly them this is another condition called immune thrombocytopenia. This also needs ivig to stabilise but 100g in 1000ml plus other treatment. You are unlikely to have this condition. Either way though falling platelets is a signal to start treatment. It is the rate of fall that is important in this.
I have been on IVIG for some time now, and for me it has been a godsend. No winter colds etc for several seasons.
However, the perfusion is a collection of other people's IgGs , thousands of them. People that is. The Idea Is that if one of those thousands of people have been exposed to whatever comes your way then your system is primed ready to deal with it. But if not then it's up to your adaptive immune system to kick into action.
I’ve been on immunoglobulin for about five years. Other than a couple of fairly mild cases of Covid, I have not had so much as a cold in that period. I converted to weekly at home SCIG (subcutaneous immunoglobulin) from monthly hospital IVIG soon after starting. While you are infusing the same material,the dosage is reduced to 1/4 but four times a month. This has the effect of smoothing out the peaks and valleys of immunity thus providing more constant protection against infections.
SCIG infusions are completed in about an hour via small pins (painless) inserted immediately under your skin (as opposed to in your vein) with disposable paraphernalia provided by the drug company. The process is easy to learn, easy to administer, avoids regular visits to the hospital and the potential for skin infections, etc.
All in all, many advantages over IVIG with no obvious disadvantages. There are numerous comments on SCIG on this site.
my situation is very different as I was diagnosed with CLL in 2008 and have been on 5 different chemo drugs and in treatment the sixth time. But, my IGG levels decreased and I was getting pneumonia and colds frequently (3 pneumonias in 2024 alone). So I am now on monthly IVIG infusions which has helped immensely. I didn’t fully understand whether you said you only had one IVIG infusion or if you are getting them more often. My oncologist said that I would probably never stop getting IVIG infusions. Best wishes.
I'm getting them monthly, have had 2 so far. After the first I felt remarkably well. Now 2 weeks past my second one, I've come down with the same cold I fought all last fall although I'll have to say that so far anyway, I'm not nearly as sick as I was. If I'm able to get over this cold normally, I'll guess I'll know that the treatment has had some positive impact. It's been helpful to read about the ebb and flow of effectiveness some have experienced. Thanks for responding.
good morning and welcome to the club of the roller coaster.
The lymphocytes which are the cancer cells are very volatile and can take dramatic swings throughout the course of the disease or any number of things, including a cold, virus, or even a vaccination. Or seven years, my account bounced all over the placeto the point of being told, I needed treatment next month to or your fine for another year.
it's pretty rare.
As far as your WBC counts go, what matters most is the differential of WBC.
Do you have a sample of your numbers
ANC (absolute number of neutrophils as opposed to percentage)
ALC (absolute number of lymphocyte counts as opposed to a percentage )
What is your platelet count?
What is your hemoglobin?
IgG is a mix of pooled antibodies from around 1100 donors in each dose. It Is the luck of the draw when it comes to which antibodies you get?
So maybe you were exposed to something that the antibodies you received did not cover well whatever you were exposed to, or that it kept it from getting worse.
regardless it's good to stay on the IgG. Before starting these myself every little cut and scrape on my hands got infected and I had to give up my surgical practice. Further at a horrible sinus infection 11 out of 12 months.
One more question, do you wear an N 95 mask around your grandkids, especially if they're ill?
been getting immunotherapy for 5 months now. It has always helped my immune system but after last weeks infusion I’m beginning to feel like a different person. Being consistently sick was extremely burdening for my body. I no longer feel fatigued and low energy.
Some data/experiences/talk with docs that may put your situation into perspective, based on my IgG and infusion history. I first started getting infusions of gamma globulin off and on since 2014. Really helpful in reducing symptoms and duration of colds, etc.
However, your IgG numbers were so low to start with that the appearance of the second cold may just indicate your prior level of risk. The normal range for IgG is 700-1200, depending on which institution/test/protocol. Typically docs get worried with 500 or so, and U.S. guidelines usually say to start when the numbers get into the low 400s. My own current set of infusions started when i hit 399.
So the fact that yours was below 200 means you had a long way to go. And 600 means you're still below the low range of "normal," according to the chart i use.
BTW, i'm also on the subcutaneous infusion approach mentioned by others and it is an effective solution, especially if you live far away from an infusion center. It is intimidating in the beginning, and then becomes routine.
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