Beth’s donor has signed, and we now have a transplant schedule

I got a call yesterday afternoon from Renee, the transplant coordinator at West Penn. Beth’s donor has signed all the necessary paperwork, and a date of December 14 has been set for the transplant. That means, working backward from that date, the following schedule has been established:

December 5-7: Outpatient treatment at West Penn’s Medical Short Stay unit. Beth will be treated with a drug called Kepivance, the purpose of which is to prevent “mucositis” – mouth sores – one of the more severe side effects of the chemotherapy drugs that Beth will receive. This is an intravenous treatment.

December 8: Beth will be admitted to West Penn’s “T-7” floor – the Hematology/Oncology (or “hem/onc”) unit.

December 8-12: She’ll receive the “intensive” chemotherapy, also called “conditioning”. She’ll receive two or three intravenous drugs spread out over these five days:

Fludarabine: “It has been unofficially and casually referred to as “AIDS in a bottle” amongst healthcare professionals due to its significant immunosuppresive activity”.

Busulfan: “Currently, its main uses are in bone marrow transplantation, … where it is used as a conditioning drug. Busulfan can control tumor burden but cannot prevent transformation or correct cytogenic abnormalities”. To put this into perspective, the Vidaza that Beth was receiving had two functions: it had a cytotoxic effect – it killed things – but it was also supposed to enable her to make her own blood cells (a thing it never did).

Thymoglobulin: I don’t know if Beth is getting this one; it’s on the transplant sheet that Dr Rossetti gave to us, but Renee yesterday said Beth was getting two chemo drugs. Thymoglobulin “very substantially reduces immune competence in patients with normal immune systems”.

December 13-14: Total Body Irradiation (200 cGy).

The donor will undergo five or six days of Neupogen injections “to move stem cells from bone marrow to peripheral blood”. She will then undergo one or two days worth of “collection” – a four- to six-hour process by which blood will be withdrawn from one arm, will flow through a filtering device (similar to a dialysis machine) that will collect only stem cells, and the remaining blood will be re-infused into the other arm.

The stem cells will then be flown into Pittsburgh, where a (we hope) properly-“conditioned” Beth will be awaiting their arrival. The donor is a young female, and she is not from the United States. That’s all we may know about her at this time. I may have mentioned earlier, that we found three “10/10” matches. This is out of 10 million US-based donors, and an international database of seven million donors. For more information on this, see http://www.marrow.org.

It’s interesting to me that they call this procedure a “transplant” – but really, it’s like a slow motion transplant – a damaged organ (in this case, the bone marrow) is removed, slowly, and a new organ, in the form of stem cells, is “transplanted”, albeit slowly.

We may learn something today

We have an appointment at 1:45 today with Dr. Rossetti, our usual monthly appointment with him. My hope is that we’ll hear some good news about a donor, and possibly a schedule for the transplant. So today I’ll go in and work from about 6 am till 10 am, and then take Beth to her Vidaza treatment at 11:30, and then out to West Penn.

One of the women I work with has a mother-in-law who has had a mild, chronic version of leukemia since 1988. Over the years, she had no treatment at all for it; now she is in her 70’s and it has increased a bit and so now they’re bringing her in for chemo.

The danger always is that these “pre-leukemias” (MDS, CMML, etc.) will progress to AML (“acute myeloid leukemia”). That’s when it’s really aggressive.

Beth has gone the other way. They’ve beaten down her leukemia function, but in the process they’ve seemingly hollowed her out as well. She had some difficulty walking up the three steps to our bridge last night. She has 20% bone marrow, instead of the usual 50%. And all her other blood levels are just bumping along at a very low rate.

When I first started reading about Vidaza, I was under the impression that “The expectation is that the Vidaza will reduce her overall ‘risk level’ and strengthen her body for ‘conditioning’, which will kill most if not all of the cancer-causing function”, as I wrote at the time.

In a randomized controlled trial comparing azacitidine to supportive treatment of MDS, around 16% of people receiving the drug had a complete or partial response—blood cell counts and bone marrow morphology returning to normaland 2/3 patients who required blood transfusions before the study no longer needed them after receiving azacitidine (emphasis added).

So Beth is not among those who has not needed the transfusions. She’s needed them. The Vidaza is killing the cancer-causing function, but on the other hand, it doesn’t seem to be strengthening her at all.

This will be something to ask Dr. Rossetti today.

Two possible courses of treatment

We talked with the bone marrow transplant folks at West Penn yesterday. MDS has four separate risk levels; the chart nearby outlines them. Please keep in mind that the “median survival” is for untreated cases (yes, those numbers scared me very much); with treatment, they can be extended somewhat, and following a course of chemotherapy and bone marrow transplantation, an outright cure (or at least, what they call “complete remission”) is possible. And this is the treatment method they will follow.

It seems to the doctor at West Penn as if Beth is either at risk level 4 (which is the last before being on full blown acute myeloid leukemia – AML), or she has a kind of emerging AML. Both are kind of nasty. The treatment will vary, to some degree, based on which is the actual diagnosis. I’ll explain momentarily.

They took a second bone marrow biopsy yesterday to confirm which form of the disease she has. Meanwhile, she has been admitted to West Penn’s hematology/oncology unit (“hem/onc”).

There may be two possible courses of treatments. If she has the emerging AML (which at this point seems less likely), she will remain in the hospital for 30 days and undergo a pretty intensive chemotherapy. At the end of that time, she is a candidate for a bone marrow transplant. (There is a “national registry,” they will have to find a donor, etc. More about that at some future point).

If she has the MDS, there will be a lighter-weight kind of chemo and drug therapy, which may enable her to proceed on an outpatient basis. This will obviously be easier on all of us, but I believe it will take longer. And following this, they are also looking to do the bone marrow transplant.

This is a very weird disease, or set of diseases. It is a potent one; at Beth’s level, there is not a lot of life expectancy, unless the bone marrow transplant is successful. And if it is successful, there is a chance that it will result in a complete cure.

All of this is made possible by various research efforts over just the last 5-10 years.

More later, as I learn things.