‘crohn’s’ Category

3-month health update

This morning at 7:30 I had my 3-month follow-up PET scan in Fairfax. I’ll be getting scans every 3 months for a while, then every 6 months, every year, and eventually (I hope) will stop altogether. My oncologist appointment isn’t for another three weeks (getting an appointment with any specialist in Northern Virginia is so difficult these days) so I won’t know the results for a while. Presumably, if the results are bad, I’ll hear about it in a day or two.

This afternoon was my first gastroenterologist appointment since late last year. The appointment was supposed to be a few weeks ago but got canceled (by them) due to some emergency. Sitting in the very crowded waiting room, Kathie and I overheard other patients talking and complaining about how long they had been waiting… some had been there an hour before us, and were being told that the wait could easily be another hour (for them… so two hours for us). We got up, rescheduled for a few weeks in the future and left. That’s the first time I’ve done something like that, but I guess it’s the first time in a long time that I’ve gone to a doctor when I’m not sick, and had that flexibility. Sure is nice!

In general, feeling very well, still feeling better than I have in the past 8 years or so!

Crohns results

Two new sets of results in one day! I just got a call from my gastroenterologist. The pANCA/ASCA test results are back, and they are positive for Crohn’s disease. The pANCA/ASCA test isn’t a definitive test, but it’s a strong indicator (something like 80%) for Crohn’s. So, my GI doctor says I probably do have Crohn’s, even though the first pathology report said “no evidence of Crohn’s disease indicated”. Since I’m not having major symptoms from the Crohn’s right now, he says I should continue to deal with the Hodgkin’s situation and resolve that first, then if I have GI issues, we can resume some Crohn’s maintenance / treatments.

The roller-coaster ride continues!

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.

Surgeon

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.

Gastroenterologist

Wednesday was my appointment with my gastroenterologist who’s been treating me for Crohn’s since the beginning of this year (after my previous doctor stopped accepting our insurance carrier, United Healthcare), and who recently referred me for surgery (which was the best decision we ever made!). The biggest shock was that he said his interpretation of the pathology report is that I’ve never had Crohn’s disease, and that my symptoms may have been caused by Hodgkin’s all along. The prednisone I take for Crohn’s is also used to treat cancer, so it might have been keeping the Hodgkin’s at bay.

This makes no sense to Kathie or me, so my GI doctor is having some additional tests (pANCA/ASCA serum tests) run to determine the likelihood of me having Crohn’s or not. It’ll probably take two weeks to get those results. In any case, he’s terminated all my Crohn’s drugs (Pentasa and 6MP currently), since he doesn’t think I have Crohn’s and there’s no point in treating me for Crohn’s. That’s fine by me, since I feel the drugs haven’t really helped at all during the 5 years I’ve been taking them, and one of them (6MP) shouldn’t be taken during chemotherapy.

Very confused…