Postings to keep friends and family informed about my dealing with CLL and Small Lymphocytic Lymphoma (SLL). Sometimes informational, sometimes random thoughts, and perhaps, sometimes just ranting. PLEASE DO NOT take anything I write as medical advice for yourself. I am NOT a doctor and do not play one on TV!
Monday, May 28, 2007
Memorial Day 2007
Tuesday, May 15, 2007
Gee, IVIg for IgG
I had my oncology appointment last week and got all my blood test results. The CBC wasn’t changed too much from last month. Platelets dropped back down, and the lymphocytes went above normal. Here are the highlights with normal range in parentheses:
- Absolute neutrophils 2.0 Low (3.0-7.0) (infection fighter)
- Percent neutrophils 27.5 Low (40.0 – 74.0%)
- Absolute lymph 4.5 High (1.0 – 4.0) (First time since chemo this is above normal)
- Percent lymphs 62.4% High (19.0 – 48.0%)
- RBC 4.46 Low (4.7 – 6.1) (This one got quite a bit better)
- MCHC 36.8 High (32.0 – 36.0)
- RDW 10.6 Low (11.0 – 15.0%)
- Plts 106 Low (150 – 400) (good news is they are still above 100)
However, the big surprise was that my Immunoglobulin G (IgG or gamma globulin) level has dropped way out of normal range. My number was 438 and the normal range for my lab’s test is 723 – 1685. So what is IgG? Glad you asked. Here is an explanation from WebMD:
“IgG antibodies are found in all body fluids. They are the smallest but most abundant of the antibodies, normally comprising about 75% to 80% of all the antibodies in the body. IgG antibodies are considered the most important antibodies for fighting bacterial and viral infections.”
There are other antibodies such as IgA and IgM. However, I think IgG is the only one we can boost through medical intervention. Since this means that I am at quite an increased risk for infection because my immune system is quite compromised, the doctor has to decide when to intervene. The standard criteria for intervention are that the IgG level is below normal and the patient has had two or more infections in the last year. Hmm, guess I fit those criteria. Just since January I have had bronchitis, pneumonia, ear infection and a cold.
So, what is the treatment? Again, so glad you asked. The following is compiled from Wikipedia:
It is infusion of a product called IVIg, which just means intravenous immunoglobulin g. IVIG is an infusion of IgG antibodies only. Therefore, peripheral tissues that are defended mainly by IgA antibodies, such as the eyes, lungs, gut and urinary tract are not fully protected by the IVIG treatment.
FDA guidelines for IVIG state the product should be:
- Prepared out of at least 10,000 different human donors.
- All four IgG subgroups (1-4) should be present.
- The IgG should maintain biological activity and lifetime of at least 21 days.
- Does not contain samples which are HIV, hepatitis B, hepatitis C positive.
- Screened and treated in a manner that destroys viruses.
Well, that all sounds just wonderful, so let’s go do it. Hold on, not so fast. There are some things to consider. First of all, it is VERY expensive. It is taken from plasma from donors and if you read above, 10,000 donors is a lot. (I have read elsewhere that it is taken from between 3,000 and 10,000 plasma donors.) Dr. Netaji said it is about $10,000 for the treatment. It can cost up to $90 per gram! However, Dr. Netaji said the insurance company reimburses him $15 per gram less than what it costs him. That means it would cost him a couple thousand dollars to treat me in his clinic. In order to get around this, he would send me to the hospital because the insurance company reimburses hospitals at a higher rate….sheesh!
The treatment is given over several hours and repeated for 2 to 5 days and then often repeated again at one to three month intervals until a satisfactory response is gained. So that means I could be in the hospital up to five days! The “common dose regime” is .2 to .4 grams of IVIg per kilogram of weight for four consecutive days to a total of 2 grams/kilogram. So, for my weight that would be 140 grams total, if I did my math right.
Also, there is a chance of adverse reaction, especially the first time, and that is why it is given very slowly. What are the adverse reactions? You are a curious reader, aren’t you?
Mild-to-moderate headache, chills, chest discomfort may develop in the first hour of the infusion and usually respond to cessation of the infusion for 30 minutes and resumption of it at a slower rate. Fatigue, fever, or nausea may occur after infusion and may last as long as 24 hours. Other side effects include, dizziness, leg cramps, muscle aches and pains and pain and tenderness at the injection site, difficulty breathing, shortness of breath, wheezing, chest pain or tightness, seizures or convulsions. A severe anaphylactic reaction may occur but this reaction is rare occurring in about 1 out of 1000 people. I also found a bunch of other rare reactions such as renal failure and even skin falling off the hands and feet – what a lovely thought.
I do have to be careful because some brands are made with a fairly heavy sucrose base and that would adversely affect my diabetes. IVIg is in short supply now and this is a recurring problem.
So what did we decide to do? Alright, I’ll answer one more question. We are holding off for right now. BUT ONLY FOR RIGHT NOW!! (I sent an email to my SS class last week and a few people thought I was refusing treatment for good – nope!) If my level drops more next month, or if I get another infection, we will do the treatment. Because it is in short supply, I believe other folks need it much worse than I do right now. My ear infection finally cleared up a week or two ago and I haven’t had any new infections since January or February.
And now class is dismissed. So glad you could join me for this month’s lesson on your way to an honorary medical degree. Oh, one more thing before you leave. Please keep me in your prayers and pray that my level doesn’t drop any further and that I don’t get another infection. My daughter, Cheri, is going to a wedding in Las Vegas next week and I am going to fly out with her on Monday so that she isn’t traveling alone to Sin City. We will come back Thursday night. I need to stay well for her sake. Since I don’t gamble, and don’t even like it, in addition to site seeing around the city, we are going to drive out to Hoover Dam and do the tourists bit there.