A couple of people have mentioned to me that they haven’t seen any updates here. And that’s just a case of “no news is good news”. We saw Dr Rossetti yesterday. Beth reported that she is feeling “fine, wonderful”. And that’s about the way it goes these days. Of course, she is not totally well yet. Not anywhere close. She spent six months last year with her blood being eaten away by leukemia and Vidaza, followed by a “stem cell transplant” that was a complete shock to her system (“intensive chemo, full-body radiation, then an infusion of new DNA that might or might not be able to co-exist with her present system). Months in the hospital with a mightily suppressed immune system and some of the nastiest infections I’ve ever seen.
It’ll take her a long time before she gets anything near her old strength back. She really is skinny. The Lovenox injections have left her with some pretty bad bruising in her abdomen area. As much as I tried to be careful, they are nasty, painful little shots. The purpose of injecting them into the abdomen is to get them into some fatty tissue that won’t feel much pain, but she is just too skinny to have much fatty tissue left.
Our 25th anniversary is coming up on June 1. We are going to take a couple of days off and go to, of all places, a “cancer survivors camp”. It’ll be out in the woods, but there are supposedly all the amenities. (This has not yet been confirmed, but it’s what we’re planning. I’ll have more on this later).
One of my Facebook friends recently lost his wife to leukemia. And one of his Facebook posts said simply, “I wish I’d held her hand more”. I am very conscious that I could have lost her, but did not lose her. Right now, my wish is simply to hold her hand as much as I can.
“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.
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.
I spoke with the Transplant Coordinator at West Penn yesterday, and the testing from all three donors is in now. All three of these match on 10 of 10 HLA (DNA) categories. All are three are female; two are younger, one is older (described as “under 50” still); two are international, one is domestic. Their blood type and age will be considered in the decision. Doctors should decide soon now. And it could be 3-6 weeks till Beth starts her conditioning regimen.
One writer with CMML wrote that she was on “decitabine 5 days a month for 9 months now. I am in remission but must stay on the chemo”. Later, she said she was “still undecided whether to go with the SCT [stem cell transplant, or bone marrow transplant] or just stay on the chemo.”
Recovery is still ongoing. Last week’s blood test showed increases in white & red blood cells but a decrease in platelets. Doctor wants me back in this week for another blood test. I’m also experiencing some lower bowl discomfort. Doctor prescribed some Prednisone and Dicyclomine. I’ve also removed all dairy from my diet and I feel much better. The possibility exists that there could be a little “Graft vs. Host Disease” (GVHD) going on but, it could also be the prophylactic drugs I take every day causing havoc with my digestive tract. Good luck with the doctors and your decision. Personally, in my case, I looked at chemo as a band-aid and the transplant as the “fix”…but that’s me.
One of the reasons why they go for a “10/10” match on the DNA (HLA) is to try to manage the “graft vs host”. You want some of it, for the “graft vs leukemia” effect. But you don’t want so much that the new tissue (stem cells and blood) rejects its new host body.
I talked with the Transplant folks at West Penn yesterday, and they let me know that, for the first time, we have a confirmed donor. This person is a young female, who matches 10/10 on the DNA (HLA) markers, and has completed all of the requisite testing. She will continue to undergo further testing. As well, there are two other individuals, also 10/10 matches, who are in the process of completing all of the other testing.
So potentially we will have the pick from among three donors.
For Beth, there was a moment of celebration. Then she realized, “I’ve been feeling pretty good these last few weeks. But pretty soon, I’ve got to go in, do the chemo, do the radiation, and then it’s a whole new kind of struggle.”