It's a pretty strange concept. My immunologist sent me to a hematologist because he thought I could have an underlying cancer causing the immune problem. The hematologist ordered a CT scan of my abdomen and neck/head, I had previously had a chest CT scan done at the hospital to confirm pneumonia #4. The result showed splenomegaly, which is basically a somewhat larger and distorted spleen: I also had an accessory spleen, sort of a mini-spleen growing out of the original.
One of the causes of splenomegaly is cancer.
The hematologist had seen CVID cases before, but usually in advanced cancer patients, and nothing indicated cancer in my test results. Still, the CT scan was abnormal, so she ordered a PET/CT scan, which took a little time for my health insurance to approve. She went on to explain that splenolymphoma is actually one of the better types to get in that, assuming it is caught somewhat early, is usually self-contained and removing the spleen usually resolves the situation with no follow-up with radiation or chemotherapy.
The PET/CT scan was interesting. I've previously had CT scans and MRIs, I'd never had a PET scan. And this was a combo PET/CT scan, which was kind of interesting. The CT scan itself is very fast compared to the first one that I had some nine years ago, they did my abdomen/neck in only ten minutes or so when the hematologist ordered the initial scan. The combo PET/CT requires a nuclear tracer injection that measures "sugar uptake": basically, cancer cells are very hungry and will absorb more of this tracer than normal tissue. However, it takes 45 minutes for your body to properly ingest this stuff after the IV is set up, so you sit around and watch TV while waiting.
After the waiting period is up, you're taken in to the machine room. The scanner is essentially two machines in series: they run a CT scan, then the PET scan. The CT is fast, the PET is not and I got a good nap in.
The reason for the combo scan? The CT scan is overlayed through an imaging software package that effectively gives them the ability to examine the distribution of the nuclear tracer in 3-D!
I think that's pretty darn cool, and I have a CD of it!
Unfortunately I can't directly view it as I use a Mac. I have two virtual systems running XP and Windows 7, I just haven't loaded it yet. I really ought to and check it out.
Along with the CD we got a copy of the radiologist report which had some very interesting terminology to indicate that all of the nuclear sugar uptake was normal, indicating that there was no evidence of cancer and that the splenomegaly was nothing to worry about.
Last Wednesday we met with the hematologist to review the results, we also did another blood draw for a CBC and another Ig panel. She had the results of an Ig Subclass which breaks down the Ig gamma globulin into four sub-types, all of the numbers were sickeningly low and the Ig panel numbers for IgA, IgM and IgG were largely unchanged from previous tests. I've now had seven treatments and we'll find out next week if there's any improvement. She confirmed that the PET/CT study showed no cancer, and that would be all we would need to see her for.
This was a bit of a disappointment as she is a fantastic doctor. You ask her a technical question, and she answers it at an equal tech level, assuming that you probably know what you're talking about. My wife has a pretty advanced medical knowledge and started asking some advanced questions and the doctor ratcheted up her answers. My wife ratcheted up her questions, the doctor did likewise. Soon the doctor was talking over my wife's head, and my wife loved it!
So my wife was kind of disappointed that we wouldn't be seeing her any more.
Which brings us back to cancer being a good thing.
Amongst the various kinds of immune deficiency there are primary and secondary. Primary ID is genetic. You're born with it, you might have it all of your life. If it manifests as a child, there's a good chance that your immune system will wake up and you can discontinue treatment, though you'll have to monitor your Ig levels which is no biggie. Secondary ID is being caused by something else, such as cancer of the spleen. If you can resolve the "something else", frequently your immune system will restart, though it might require treatment for a while. So if I'd had splenolymphoma, and they'd removed my spleen, I might have a functioning immune system at some point.
But that isn't what happened. Which means I'll probably be doing gamma globulin infusions for the rest of my life. Weekly. Four needles. Two hours.
Cancer and one operation might not have been so bad.
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So you have a chronic, non debilitating, non fatal illness. I was diagnosed with CVID 29 years ago. I live a very normal, high quality life. I've been the CEO of a $100,000,000 SEC reporting company and have two kids, currently in Ivy league colleges who also have CVID. Monthly infusions and you'll be good to go. The illness is expensive, but Obamacare should take care of it all. Really. You should contact the IDF, Immune Deficiency Foundation.
ReplyDeleteGood Luck..... you'll be fine
By the way . . you seem very confused, I have a feeling much of what you believe is totally incorrect. For example not all PIDD is genetic. The are over 15 primary immune diseases. There is no history of PIDD in my family and I was diagnosed at age 35. If you are properly diagnosed you stand a great chance of living a full and relatively normal life. You will probably need month infusions via an IV (I have a nurse come to my house) or the is Sub Q that you can do yourself at home once or twice a week. Personally I prefer the once a month route.
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