That spleenomegaly is not unusual in cases of CVID. The spleen is essentially a big lymph node, and if your body is fighting infection, it can kick in to high gear. Obviously, having had four bouts of pneumonia this year, it's been working overtime.
Also, the hematologist is also an oncologist, a cancer doctor, and works at a cancer center. One of the problems of living in a semi-rural area is a dearth of specialists.
Sunday, September 27, 2009
Well, I don't have cancer, which isn't absolutely a good thing
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.
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.
Sunday, September 13, 2009
The Placebo Effect
Placebos are fascinating things: basically inert sugar pills given in lieu of actual medicine. Well, it seems that big drug companies have been canceling drug trials because their new pills have been faring no better than placebos in trials.
I came across this article in Wired, and though I haven't finished reading it yet, wanted to write a little about it.
Now, I'm not sure what to think about placebos in relation to my condition. My body isn't producing gamma globulin, this is known. It's also known that intravenous and subcutaneous injection of gamma globulin products can stimulate the immune system into functioning properly. I definitely don't know whether or not I'd want to participate in a trial that could involve placebos.
I came across this article in Wired, and though I haven't finished reading it yet, wanted to write a little about it.
Now, I'm not sure what to think about placebos in relation to my condition. My body isn't producing gamma globulin, this is known. It's also known that intravenous and subcutaneous injection of gamma globulin products can stimulate the immune system into functioning properly. I definitely don't know whether or not I'd want to participate in a trial that could involve placebos.
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