“You’re really looking stellar”, Dr Rossetti said to her. And she was very happy to be feeling as well as she was feeling. Her blood numbers were all normal, and have been for a while. (I’ve reproduced some numbers from her blood chart nearby). Notable was the Hemoglobin level of 13.7, and the fact that her protein levels are back to normal. That made her happy.
The biopsies taken from last week’s procedure “looked good, with no significant evidence” of anything serious. She’s still got “a touch of chronic GHVD” (graft vs host disease). The Budesonide she’s taking “topically” deals with the symptoms she’s experiencing in her GI tract.
It’s probably the best possible worlds that she’s got these mild GVHD symptoms, which are well controlled. What she’s got now is probably what she’s going to get at this stage. (GVHD is pretty much brought on by DNA/HLA mis-match with the donor. So the extra lengths they went to, in selecting a donor, are helping tremendously right now). At this point the possibility that she will get further symptoms is about 30% (not 50%, which is typical in the case of having unrelated donors).
She’s still susceptible to infections, although she’s gotten the primary infections that they look for. None of them were serious, but she had “a moderate amount of everything”, and that indeed was life-threatening. But she continues to take an anti-viral infection drug, and her chances of bacterial infection are “way down”.
It was a good report yesterday, after a number of months of bad times.
We are headed down to the short stay unit again today. My understanding is that Beth is going to have to get another transfusion. I’ve been going in to work each day, and so I don’t get a chance to talk directly with the folks in the hospital, and so I have less information than I’d like. Last I saw, her hemoglobin level was rising slightly, but it’s also been a hallmark of her behavior that, if she’d get a transfusion, she’d feel good, she’d try to do a lot of stuff around the house, and then she’d feel tired again. Maybe that’s what’s happening.
We do have an appointment with Dr Rossetti on Monday, January 9, and we should find out a lot.
Beth is still suffering from itchy, painful blisters on her hands and feet, and she’s itchy in other places as well. She does seem to be having less trouble eating (it’s easy to see that she’s lost some weight during this process).
Beth is doing so well — her numbers are responding so positively, that she won’t need to be going to the MSS after tomorrow. That is, her hemoglobin went UP (from 9.5 to 9.9), her platelets went up (from 52 to 53 to 63), and her white count is holding up in the normal range. She’s supposed to be going to get some of the things she needs, but the only thing they’ve been giving to her are fluids and some minerals, in addition to her antibiotics. So after tomorrow, they’re going to just write her prescriptions for oral antibiotics, and she will probably be moved down to a weekly or bi-weekly testing schedule.
She still feels terrible — super tired all the time. And they say this will continue. But at least she’s out of the woods with her blood levels all going up.
Really we are back on T7, because the MSS is closed for the weekend, but we are in the MSS phase of treatment, so I thought, just go with it.
Beth’s numbers appear to be good: hemoglobin over 10 (she was never there before the transplant), white cells over 4.5, and even platelets up a bit to 52. Her blood pressure (treated) was 122/80, though she was still complaining of pain and itchy skin, both likely from GVH. She is getting the IV antibiotic Daptomycin, along with some magnesium. Barring any complications, this should be the routine for a while.
It seems as if we are entering the “medical short stay” (“MSS”) phase of treatment. Beth will go in to the MSS unit at West Penn each day (weekends too), where they will draw blood, check levels, and give her what she needs.
So even though her white count is in a normal range, all sorts of other things are out of balance. She will likely still need platelets and hemoglobin and antibiotics an all sorts of other things, and she’ll get them on a day to day basis for the next few weeks.
I’ve dropped her off at the MSS and I’m ready to head in to work now. I expect to be working pretty much full time again (with a few exceptions). It is not often that you can take three weeks off of work for a major medical crisis and step back in and pick things up, without experiencing other major crises, and we are by no means out of the woods, but we seem to be, with the beginning of the new year, getting ready to pick back up with our lives without too much major disruption (we hope), and I am grateful to everyone who has helped us to get through this.
I went in to work today, so I didn’t see it, but Beth said that one of the doctors came around with a whole group of residents who all took a look at Beth’s mouth sores (Those very ones in the photos below). The mouth sores are very uncomfortable for her – they’ve contributed to a bad sore throat that prevents her from eating. She’s still got lots of bone and muscle pain – “your whole body was burned from the inside out”, and she continues to have elevated blood pressure levels, though they are giving her Norvasc to bring that down.
It seems as if she will be going home tomorrow. We’re still waiting to hear from another doctor tonight, but she’s been off the antibiotics, and she hasn’t had a fever. Her white blood count was 4.57 this morning, which is somewhere near the normal range, and her hemoglobin was hanging out around 10.0 – both of these numbers are stratospheric for her, but only the white cells are hers (the hemoglobin is left over from some transfusions she had over the weekend).
Now that a donor has been recruited, Dr. Rossetti thinks that we will be able to “have stem cells by mid December”. No dates are firm yet, but we should be able to have a firm schedule in place by the end of next week.
Beth’s blood counts continue to be critically low – her white blood cells yesterday fell below 1.0 (“.94”) for the first time since I’ve been watching the numbers. And as I noted, her hemoglobin was 7.2, and her platelets were only 18 (again, lowest I’ve seen them). So today, Tuesday, she’ll go to Jefferson Hospital for her (7th of 7) injections of Vidaza, for two or more units of blood, and also, for platelets.
Beth’s bone marrow is defective, and every stem cell she produces is defective, and so the goal over the next few weeks (including the “intensive chemotherapy” and radiation) will be to bring her “as close to zero bone marrow” as she can get. The Vidaza, while not enabling her to produce good blood cells as promised, has at least gotten her most of the way there already. And that’s a good thing. [Also a “God” thing, as I had written at first.] The reason you want all of it gone is to reduce the chances of relapse down the road. And in addition to the “intensive chemotherapy”, the full body irradiation “cuts relapse rates 20%”, according to Dr. Rossetti. Every little bit helps.
Once the new stem cells are transplanted, then Beth’s numbers should begin to go in the right direction. Her white cells should begin to recover within 2-3 weeks. Engraftment should occur on or before day 30. Hemoglobin production should start in about three months. Anti-rejection drugs will be administered between days 35 and 90 – more or less to either to control or enable some “graft-vs-host” (GVH) effect. To some degree, the GVH has a “mopping up” effect – the immunity of the new stem cells will target and destroy any remaining defective bone marrow, or any remaining defective stem cells.
Too much, to be sure, can cause problems. But this is what the donor search has been all about: matching on precisely the right DNA characteristics, to give just enough, but not too much, GVH.