November 3, 2006
Kathie and I are now scheduled for chemo class for next Wednesday (11/8) from 10am – noon. Fortunately, thanks to all the great info on the internet, and especially on the Hodgkins Forum, I think I already have a pretty good idea what to expect. They’ve scheduled me for 6 cycles (6 months) of chemo, which was a bit of a surprise – I was expecting 4 cycles since my cancer isn’t very advanced. I’ll ask the oncologist about this the next time I see him (I have 4 1/2 months until it makes a difference, after all). Chemo will start some time around 11/29. We’re also trying to plan our vacation to the Caribbean in about two weeks! We both definitely need to get a way for a while, since we haven’t had a vacation this year yet (we’d been saving up vacation time for our 2-week cruise of the Mediterranean, but we ended up missing it because of my surgery!).
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November 2, 2006
Still waiting for the pANCA blood serum test for Crohn’s, and the re-analysis by NCI’s pathology lab of my intestinal tissue sample. In the meantime, I got my flu shot yesterday, and went to the dentist today, both of which are recommended before starting chemo. The dentist said that chemo tends to suppress saliva production, which causes a change in the pH of the mouth, which causes dental decay and gum disease, so he gave me prescriptions for special mouthwash and toothpaste to use during chemo. Also chatted with the oncologist about doing a consultation at Johns Hopkins cancer center, so they’re going to send all my test results and tissue samples up there once they get it back from NCI.
On the bright side, we’re going to dinner at The Melting Pot tonight, one of our favorite restaurants, to continue celebrating the fact that I can eat anything at all now that my surgery has fixed all my immediate intestinal issues! Some time in the next week or two we’ll be going to Morton’s, my personal favorite, thanks to the “get well” gift card from my great co-workers!
Kathie and I are also still trying to figure out when we can squeeze in a vacation, preferably before starting Chemo.
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October 31, 2006
The oncologist emailed and called today with the PET scan results. Overall, the results are about the best we could have hoped for. They showed a small amount of “activity” around the surgery site, and nothing elsewhere in the body. Also, my blood tests indicate that it’s unlikely that my bone marrow is affected. The PET scan activity is a little indeterminate around the surgery site though since it could be due to my healing from the surgery — but at least we know that there isn’t any cancer anywhere else in my body!
He also let me know that he sent my removed intestine to another pathology lab, the best lab in the country supposedly, so we can get another independent verification. It’ll take a week or so to get the results. Assuming they confirm the diagnosis, I’ll be starting ABVD chemotherapy in a few weeks. I’ll probably have to have it for 4 months, which is the shortest therapy time.
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October 27, 2006
Today was my PET (positron emission tomography) and CT scan. The PET scan detects areas of increased metabolism, which usually means cancer, since those cells grow and divide much faster than normal cells. They inject me with a radioactive solution that gets absorbed by the body’s cells, and fast-growing cells like cancer absorb it much more quickly. Then the scanner detects the positron emissions from the radioactive decay, and can highlight the areas where the cancer lives. However, since I just had surgery and my intestines are still healing from that, the surgery site will also show up on the scan since there’s lots of new healing growth going on there.
The doctor at the imaging center seemed intrigued by my case, and we chatted for a while after the scan. He said that in 30 years, he’s only seen a few cases of Hodgkin’s of the small bowel, as it’s extremely rare (less than 1 in a million), so he’s surprised and, it seems, a little skeptical. He was also surprised and confused by the diagnosis that I’ve never had Crohn’s disease. He said it’s possible the prednisone I took occasionally for Crohn’s was keeping the cancer at bay for 19 years, but that that’s also a pretty unlikely scenario. He asked me to bring him my previous CT scans for Crohn’s, and he’s going to pull my pathology reports and go over them himself. It’s nice that he’s taken such an interest and wants to be completely thorough in the analysis. I imagine most of the time they just run the person through the scanner, write up a report and send it to the oncologist.
Now I need to wait for the PET results. If they show activity outside the small bowel, then we’ll know for sure that it’s cancer, and it’s in more than one location. If only the small bowel shows activity, then the PET doctor and oncologist will need to figure out how much is due to the surgery and how much is due to the cancer.
Time to drink lots of water to wash the radioactive goo they injected into me out of my bloodstream…
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October 26, 2006
I had my follow-up with the surgeon Thursday. I’m healing quite well from the small bowel surgery of two weeks ago, and all looks good with that. We spent most of the time chatting about the new diagnosis of Hodgkin Lymphoma, and what that means, as well as the doubt now cast on the original diagnosis of Crohn’s disease from 19 years go. The surgeon isn’t quite sure what to believe… he doesn’t think I could have had Hodgkin’s for all that time, but he agrees that the tissue analysis should have been able to detect Crohn’s if it was present. He suggests maybe I’ve had something else all this time, like IBS, and the Hodgkins is fairly recent. As he pointed out though, he’s really just a spectator in all this, as the oncologist and GI are the doctors I’m going to be spending most of my time with.
I’ve called the Johns Hopkins cancer center to ask for a second opinion / analysis on the diagnosis and treatment plan since this is such a strange case.
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