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.
Beth’s blood levels have seemingly rebounded after her stay in the hospital. Sure, she had four transfusions, but the levels from last week’s lab results show some stability and even improvement over what showed up on her last blood chart (Items shown are for 11/1 and 11/3 respectively):
White Cells 1.48 1.51;
Hemoglobin 9.2 9.1;
Platelets 59 86
So her platelet levels have actually risen, and her white blood cell count has at least remained steady. Yes, her Hemoglobin count drops a bit but at least she was able to hang steady in the 9’s, without that dip toward transfusion (8.5).
The doctors have also been measuring her LDH level, which measures “the disease process”, as one nurse put it to us. Earlier, I noted that it had been over 500 and even 600. Now that level, still high (200+ is high), has dropped to 392 and 401 on successive dates.
Bethany gets her blood tested at least twice a week, and yesterday she had another blood test. The doctor from the Lab called to tell us that the lab tests she had yesterday were more stable than the tests she had done in the hospital.
I don’t have access to yesterday’s numbers, but the last four columns in the chart below were all taken during her hospital stay last week. (Click on the chart for a bigger view, and click your “back” button to return to this article.)
The numbers in red represent “critical lows”. She’s down there in all three counts: hemoglobin, white blood cells, and platelets. It’s good that she’s “stabilized” from this. There’s another good thing: Her LDH level is down to 340. As recently as September, her LDH level was 621. As one nurse told us, “That’s the disease process”.
I may have posted some of this before, but there’s new information at the end, and it’s worth the telling.
At one point this past summer I logged into the discussion board at the Leukemia and Lymphoma Society. There are a lot of different types of leukemias, and CMML is one of the more rare ones. I came upon a thread entitled Looking for others with CMML.
(One writer writes, “There are so few people in the world with this disease, it is very scary”. Which is true.)
Most of the way down the second page of the discussion was a writer named “g-papaul”, who identified himself this way, with a post dated June 19, 2011:
I’m a 60 year old sales professional male getting annual physicals with blood tests. I was Diagnosed with CMML in Feb. 2011. My GP knew it required an oncologist and got the ball rolling. I’m from the Harrisburg, PA area and went to the best local oncologist I could find. The oncologist is affiliated with Johns-Hopkins, Baltimore, MD. My initial consultation with a transplant team at J-H was the end of March. March-April May were transfusions of blood and platelets as needed determined by my weekly blood draws at the oncologist. I also received 2 courses of Vidaza in preparation for the transplant. I was admitted to Johns-Hopkins on 6/13. On 6/15 started a 5 day run of Busulfan. Today 6/19 starts a 2 day run of Cytoxin. On 6/21 is the Bone Marrow Transplant from my donor brother. Then, 2 more days of Cytoxin. I start down the road to recovery and hopefully cured.
So he’s already into the “conditioning” phase – “intensive” chemotherapy, with the purpose of destroying the existing bone marrow, and two days away from a bone marrow transplant. Beth is due to follow a path like this one. He made several more postings. On July 8 we saw this:
I’m currently on DAY 17 after BMT. The BMT was uneventful and sort of just like getting another few units of blood. I rested for 2 days and then received 2 more days of Cytoxin. During the last day of Cytoxin you start to walk through the fires of hell. They start initiating bags of antibiotics, anti fungal anti microbials. I keep getting low grade fevers. They tell me it’s normal. Not all experience the same side effects. These drugs hit everyone differently. … I constantly feel like I have the flu. Just have to deal with it until around July 12. That’s the day projected to be the day my own marrow will be producing healthy cells.!
Later, he said:
The chemo side effects are all they say they are. … You feel like you got run over by a bus! Have to stay positive since they only last about 2 weeks. Then the miracle begins…Day 18 after transplant. Blood counts start appearing 50 here, 110 there and keep growing. Not by leaps & bounds but by 20-30 points. Several transfusions of red cells and platelets. A little rash here & there (a little GVHD is a good thing)…
I may have posted this much of his story already. Since that last posting, there was not another comment from him until yesterday. And here’s the key … here’s the thing we’re looking forward to:
I felt it was time to offer a follow up to my BMT to cure my CMML. I was released from Johns-Hopkins on August 19th to go home. Home…a wonderful place to recuperate. No more IV drugs that tear you up. Only a few in pill form to prevent various infections. We had a whole house HEPA filter system and a reverse osmosis water system on our well water installed. I DO NOT leave the house or go in the basement without an N95 mask. If I’m going to the store or doctor I wear disposable gloves too. Wash hands frequently. I finally started eating the last week of August after 6 weeks of eating nothing. I lost 80 LB and feel great…. The diet has been expanding but not my waist line. I’ve learned to eat all over again. I will not return to 290 LB!!! There are positives out of this ordeal. My Osteo arthritis is gone. (They said it could be temporary or long term). I don’t need Blood Pressure or Cholesterol meds anymore. I don’t need to sleep with a C-PAP machine. All of the anti bacterials & fungals fed me IV cured my athlete’s foot and one nail infected with a fungal infection…they rebuilt me! I currently visit my local Oncologist every 2 weeks for chec ups. He says the recovery is text book.
There’s not a lot of good medical news about CMML. But here’s anecdotal evidence that the process works, and works well. There are a couple of differences with our situation. Most notably, this individual has a related donor. But it’s a very hopeful story.
Beth got a call from Dr. Rossetti’s office again yesterday; her hemoglobin had dropped to 8.2, and so that means another transfusion. There seems to be some rhyme and reason to the way this is going. Cycles of Vidaza are indicated by the arrows above the chart.
Hemoglobin: At present, nothing seems to help this except for transfusions. However, these take about 100 days to manufacture, and we are hopeful to see some improvement now, after three cycles of Vidaza.
White Blood Cells: Vidaza seems to whack them, but they recover quickly.
Platelets: Vidaza seems to have a bit of a harsh effect here, too, although most recently, her platelet count has been falling anyway.
Neutrophils: These are very good white blood cells – first responders to bacterial infections – and these are well into the normal range, after having been far off at one time.
Monocytes: Again, Beth has “chronic myelomonocitic leukemia” (CMML), and so getting these into the normal range appears to be a good thing.
Please note that none of the above is a genuine medical opinion, just the musings of someone who has an interest in figuring out what these numbers mean.
Click on the chart to view a larger version. The last column is mostly blank because I don’t get all of these numbers right away. But Beth did get a blood sample on Monday and we do know that she needs this transfusion.
One of the more vexing issues for us has been the notion (a) that Beth’s levels needed to be under control before the transplant to maximize her chances for success, and (b) the key number that we were watching, the hemoglobin level, was continuing to go down through these treatments.
Yesterday’s intake meeting was an important milestone for us, not least because I accidentally stumbled upon a chart that contained all of Beth’s blood numbers, not just one day at a time, but in chart form. Dr. Jalil had one of these charts for roughly the period in July and early August, and Dr. Rossetti graciously had one printed for me with the most current numbers.
These charts had some numbers that I had simply not seen before, because I was asking the various office staffs to send the individual blood numbers, and I wasn’t always receiving them.
I’ve updated and reproduced the chart here, using some of the missing numbers and there are some really important things to note. First, look at the Blasts level. In July, they went way up, after the first cycle of Vidaza. We hadn’t seen this. And after the second cycle of Vidaza they went down to zero. That’s a critical level, because these are the cancer cells. Note also, the Blasts level went up a bit later in August as well. But after this cycle of Vidaza, I think we can expect to see some more zeroes.
Note too, the Hemoglobin levels went up just a bit between August 11 and August 15. That small rise was attributable not to a transfusion, but just to her own system raising her hemoglobin level. In fact, she may not have required a transfusion after August 11 (on August 18), given that level of 8.7 on August 15, but she got one anyway.
Her White Blood Cells, Platelets, and Neutrophils (especially these) are seeming to moderate, closer to the normal range over time. This is exclusively a function of the Vidaza.
So while we had been looking at just one number, Hemoglobin, and not seeing much progress there, the doctors had been looking at some of the other numbers, and that whole picture was a much more hopeful one.