‘cancer’ Category
New Pathology Results
Today I got back the results of my follow-up tissue analysis, this time done by the NIH/NCI lab (National Institutes of Health / National Cancer Institute). They also confirm the Hodgkin’s Disease diagnosis, but they also add some interesting information on the connection with Crohn’s disease, and in particular with the 5 years or so I’ve been taking 6-MP immune suppressants and one year of Remicade anti-TNF treatment:
“There are cases reported as extranodal classical Hodgkin lymphoma arising in Crohn’s disease treated with long-term immunosuppressive treatment, and recently, also with anti-TNF administration. In immunosuppressed patients these cases are nearly always EBV positive and they may spontaneously regress after reduction of immunosuppressive therapy. Given the clinical setting of this patient, reduction of immunosuppression may be an option, especially if the EBV driven process is localized”.
So, I want to discuss this further with my oncologist to find out if I really need to start chemotherapy right away or if I can just stop my immune suppressants and then monitor the Hodgkin’s over time. Maybe I’m getting my hopes up too much, since I’m not really looking forward to chemo, but I do want to at least discuss this further to understand what it means.
Scheduling
Well, my first chemo session is now officially scheduled for November 29th at 9:15am. Then I go back the next day for Neulasta to increase my white cell production. Tomorrow is chemo training class for two hours. That should be interesting. I was also contacted by a co-worker today who heard about my situation, and wanted to let me know that he was diagnosed with Hodgkins 7 years ago, went through chemo and radiation, and has been cancer-free since then! It’s always reassuring to hear success stories, and to be able to talk to someone you know, who has gone through something similar.
In other news, our post-surgery, pre-chemo vacation is finally coming together! We got plane tickets to St. Lucia although our original hotel plans fell through (the hotel had no vacancy for the final day of our vacation), so we’re looking for new accommodations. It looks like there’s quite a few nice places to stay on St. Lucia so we should be able to find something good.
Setting some dates
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!).
More waiting…
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.
PET Results
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.