Ellie's letter is so cute that I'm going to type some of it out for you:
Camp is amazing! Today alone I saw the lake and mountains, saw five people cry, and helped choreograph and write 2 songs and (again) we came up with cabin Ossipee's slogan "Wear your pants with pride!" (it's a long story!) -Ellie J Braun
p.s. I'm coming back next year!
Since we're on cute, here is a cute picture of Maggie.
|You know you want to give me some of that chicken.|
An allogeneic bone marrow transplant ("allo") is the kind you've probably heard of. I am not a candidate for this because the markers for my leukemia indicate that it is likely to respond to chemo alone so I don't need this super aggressive treatment. What they do is find a donor who is a good match and collect some of their hematopoetic stem cells (the cells that make blood). They used to do it by taking it out of the donor's bone marrow like a super huge bone marrow biopsy, but now I think they give the donor an injection of something that makes the bone marrow leave the marrow and circulate in the blood. Then they filter a bunch of it out of the donor's blood and prepare to put it into the recipient. In the meantime, they give the recipient some chemo so that there is space in the marrow for the new stuff to come in and then they infuse the donor cells. They magically find the marrow and set up shop there. I guess it can take a while for the donor marrow to get established and while it's doing this the patient is even more vulnerable to diseases than when they were neutropenic from chemo and they feel even worse than they did when they were neutropenic. However, once the new cells gets established, the cool stuff begins: the donor immune system goes out and attacks the recipient's leukemia. The patient has to be carefully balanced so that the new immune system is strong enough to recognize the leukemia as foreign and kill it, but not so strong that it attacks the donor's skin, liver, esophagus, etc. Getting the balance right can be super tricky evidently and some people are stuck with a certain level of graft versus host disease. When they first started doing bone marrow transplants, they didn't understand that benefit of having the immune system killing the leukemia. How they figured it out was that when people with an identical twin got transplanted from their twin, they relapsed much sooner than people who didn't have such perfect matches available. So now, even if you have an identical twin, you get a different donor. The patient needs to be on lifelong immunosuppressants that need to be titrated up or down based on how much anti-leukemia effect is needed. That's the kind of bone marrow/stem cell transplant that I am NOT being offered (but aren't you glad I told you about it?).
The other kind of transplant is called an autologous ("auto"). This is a kind that may be offered to me. What happens here is they would give me the shot that makes my bone marrow take to the blood stream, filter my blood to take out the stem cells and put the rest back. The leukemia cells are a different size than the stem cells so they are easy to separate (so they tell me). They would then take the stem cells and store them somewhere (I imagine a special freezer with rows of ziplock baggies filled with red gelatinous frozen stuff all lined up, labelled carefully). Next they would give me enough chemo and radiation to wipe out my bone marrow completely. When my counts drop enough or maybe when enough time passes or when I feel really really cruddy ("nope, not ready yet, she's not miserable, just uncomfortable"), then they would "rescue" me with the saved up bone marrow. I guess even though it would be my marrow that had been comfortably churning out cells in me until a few days before, it takes a while for it to get comfortable and begin doing its bone marrow thing again ("become engrafted"). The patient feels really miserable while this is going on, but the misery doesn't last as long as it would for an allo. When the cells are happily functioning, the treatment is done; there are no lifelong immunosuppressants or even special precautions needed. This might be done instead of the last round of chemo.
The idea is that the auto probably works better than just regular chemo, but does take an extra month in the hospital and takes a lot out of the patient. Dr Manno says that people tell him it takes six months to feel totally normal again after an auto. If I could predict the future, I could tell whether or not I would relapse without an auto or even with an auto (in which case I would need an allo) and then I could choose the best route. My oncologists tried to predict the future as much as they could by sending off some markers and looking at my chromosomes, etc. Fortunately, my markers were not the really bad kind (if they had been bad, Dr. Hill would have encouraged an allo already), but unfortunately, they were not the really wimpy leukemia kind either (in which case, he would have said just do chemo), but they fell somewhere in the middle ("indeterminate"). So, it's clear as mud (isn't that the way these things usually go?). I'm not on top of the data for myself yet and Dr Hill has not gone over it with us yet either so I don't have numbers to tell you about.
For now, I have another round of regular consolidation planned likely in early September and then I think Dr Hill, Terry and I will have a serious discussion. Stay tuned.
So, that's a lot of information for one night. It's raining here in the seacoast and I'm looking forward to a cooler day tomorrow. I hope we all enjoy this weekend and its weather.