Update - 10.20.10 PET Scan
This is going to be a relatively short update, but it contains mostly good news.
First, the big one: I had a PET scan earlier this week, and there was no visible disease on it. That’s a Complete Remission.
Now I’ll probably get treated for another 4-6 weeks to consolidate this progress. I will definitely get two more chemotherapy/monoclonal antibody treatments. My doctor may also add a course of radiation therapy. The last two or three times I have had visible disease, it has started in the lymph nodes near my right lung. It’s possible – though by no means certain – that zapping those nodes could help cure the disease. It’s also possible that irradiating my lungs (again) could do more harm than good. My oncologists will have this discussion amongst themselves and then give me a recommendation in the next month or so.
After that, I’ll probably get a Donor Lymphocyte Infusion – another transfusion of my brother’s white blood cells and stem cells. Hopefully that will trigger an auto-immune reaction where the cells attack my body as well as the cancer.
Secondarily, I’m working on other parallel tracks to build up my immune system – which is the agent that is going to fight off the disease if I am to be cured. The first priority is to get the system focused on the right targets, e.g., getting it to stop overreacting to things that aren’t diseases.
I have had a bunch of issues with allergies and overly-active inflammatory responses, both of which aggravate cancer – the former by diverting the immune system into unproductive overreactions, and the latter by creating high levels of inflammation-related chemicals, which the disease highjacks and uses to propagate itself.
Dealing with this has meant that I have a bunch of consulting dieticians and naturopathic doctors – I take supplements like concentrated fish oil and aloe vera, and I get acupuncture(d) once a week. Acupuncture has been an interesting experience – I get treated at a Chinese herbalist/MD’s office in Chinatown, and it has been a very interesting seeing a scientific approach to medicine whose conceptual foundations are so different from Western medicine. The acupuncture has helped me with pain in my joints, and my energy level, it has also had an effect on my circulatory system; my resting heart rate is way down, for example.
It’s astonishing how the needles can affect you – sometimes it feels like an enormous weight is slamming into me when they put them in. I actually occasionally have to open my eyes to see that there is nothing there but the needle. I don’t really know what the Western explanation for acupunctures’ effects is – everyone seems to agree that it can help with pain and other issues – but there’s clearly something to it. I also started doing yoga, which just about everyone seems to think is a good idea, for all sorts of reasons.
Probably the hardest thing I have had to do is reduce my exposure to allergens. There is an association between recurring lymphoma and Celiac Disease and Celiac sensitivity – allergies to wheat and wheat gluten. Dairy allergies are also common in lymphoma patients. One of my naturopaths suggested I try a no-dairy and no-gluten-no-wheat diet. I used to eat a lot of pasta and yogurt and cheese. Those were the obvious changes I saw coming right off the bat. I did not realize that wheat gluten is in almost everything.
For example, rice is gluten-free, so you’d think eating more Asian food is an easy solution to the gluten ban. Not so much: almost all Asian sauces include some soya, and soya is made with wheat – unless it’s made in the Thai style, usually called Tamari. That, and the cultural and linguistic difficulties communicating allergy and food safety issues at most Asian restaurants combine to make it very difficult to get gluten-free Asian food.
To make matters worse, a lot of the gluten-free food that’s supposed to help make the diet more tolerable is stuff like flatbread pizza, burritos and quesadillas made with corn tortillas, omelets, and cream-based soups. Just about everything appetizing on most gluten-free menus has some dairy in it. If you happen to be on a no-dairy-AND-no-gluten diet, you’re really in trouble.
What makes this situation particularly frustrating is that I am on a steroid regimen. On the days when I take the steroids, I cannot sleep. That tends to go away after I stop taking the pills. But long after I am done actually taking the steroids, they affect my appetite.
My need for food is staggering. For my birthday, my lady friend took me to Shaw’s Crab House, one of the nicer seafood places in the city. They have a brunch buffet that runs the gamut from omelettes to seafood and sushi to desserts. My performance that morning has been described as “epic.” I probably ate 2-3 times as much as anyone else at the table did. After substantial dinners out, I usually have to eat again within an hour. I’ve gained about 12 pounds since this started, about 8% of my normal body weight. Eating a lot was pretty fun for a while, but since I can’t eat most of my favorite foods and most restaurants can’t accommodate my food restrictions, this has been a hug hassle for the last month.
The good news on this front is that my allergy tests now say I am allergic to cow’s milk, but not goat or sheep’s milk, so I might be able to eat SOME cheese soon. I’ve been a big cheese fan for as long as I can remember – the prospect of never eating it again was pretty upsetting.
All in all, the news this time is very positive, and worth celebrating.
At the same time, everyone should keep this news in context. I’ve had Complete Remissions before, and they haven’t lasted very long. The trick with my disease is not knocking it down, it’s getting it to stay down. If we can do that, then it will really be party time.
In any case, the news is good enough that I feel like I can apply to graduate schools for next year. I think if the news had been bad that I would have most likely given up on that goal, at least temporarily. At the very least, it would have taken a lot of pressure from friends and loved ones to persuade me to give it a shot. So, great big thanks to those helped me think through the school decision these last few weeks, and thanks in advance to all the other people who are going to help me through the process – and my inability to handle it without freaking out occasionally - over the next few months.
DS
