A couple of the doctors visited this afternoon, and it seems as if Beth had an infusion-related response. That is, she received what is regarded to be a “large number” of stem cells — it was a 400 ml infusion, and she received 8 million cells (!) per kilogram of her body weight (!). So that put the total volume of stem cells. (Since Beth is about 65 kg, that’s more than 500 million cells!)
So the response she had last night is not likely to occur again. What will happen is that the harsher effects of the chemo (tiredness, etc.) will show up 7-10 days after her first bit of chemo.
Here’s a photo of Beth, after her final dose of radiation. She’s listening to the Radiation RN talk about what some of the side effects will be. She believes the radiation was worse than the chemo, but the radiation therapists joke with us and say, “that’s just the chemo kicking in”. We still don’t have a straight answer on that one.
Beth now has made it through the entire process, not feeling too well, but medically, she’s responding the same way they expect her to respond. She’s got ongoing nausea and diarrhea, and is very tired an achy. But the good word is that we can start to expect that her numbers will start going up.
The last time Beth was in the hospital, I took Dani and Sissy both to see Beth, and with Pastor Matt and me in the room, along with Dr Rossetti and a nurse, it was pretty much a full house, and no one was any worse for the wear. Except that, it’s not policy to allow children under 12 into the room.
Fast forward to today.
My church had given us some gift certificates to purchase items at their second-hand shop called The Common Thread (which is scheduled to close at the end of the month). The Common Thread is just down the hill from the hospital, in Lawrenceville, and so I made plans to drop Dani off at the hospital – the girls were going to have a coloring day – and I would run down the hill to see what I could find.
Well, not long after I got down to the store, I got a couple of calls and messages from Beth – they were asking Dani to leave, and I had to go back up and get her. Beth was heartbroken.
I had picked out a couple of hats for Beth – one she likes very much, and it will be very helpful for when she loses her hair. I got some jackets and pants for my son John (who is just turning 16). And I got some work shirts and a very nice sports jacket for myself.
Dani is extremely close with her mom. The two of them are like momma and baby duck. So it was pretty sad to have to take her home.
Last night, I spent the night in the hospital, and I think I’m going to do the same tonight. I’ve eaten a bit and I’ll grab my bag and go sit with Beth while she gets her chemo. So far, it hasn’t affected her too badly. That is, she’s still complaining about the catheter. The incision is still sore, and the tape pulls on her skin, and it makes her itchy. Likely I’ll grab some sleep in between the nurses running in and out. The older guys are all home tonight. No one else is going anywhere. So I think I’ll finish up some laundry, and head back down to West Penn.
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.
We learned a few things in our appointment with Dr. Jalil yesterday, though I’m not certain I understand it all. Dr. Jalil’s is where Bethany has been getting her Vidaza treatments. He had received a copy of Bethany’s bone marrow biopsy results, but he hadn’t had a chance to read them closely yet.
We did learn a few things. Large, trendy things, I guess you could say.
First is that the treatment seems to be working effectively. “As expected”. That is, while we have been watching Bethany’s blood levels go up and down, the general trend is that almost everything is going down.
Early bone marrow biopsies showed her being “hypercellular” – that is, her bone marrow was marked by extra tissue, and even some scar tissue. Now she is at about a 20% level of bone marrow. That is, yes, very low. Explanation: “the medication is controlling the disease”. (Blasts and monocytes, in aggressive leukemia, would tend to build up. That Bethany’s is so well cleared out is seen to be a good thing.)
For example, in an early biopsy, her blast counts were 10-15%; now they are 4%. Normal folks are at 5% blasts in their bone marrow (blasts are “baby blood cells” that grow up and differentiate. In aggressive leukemia, the blast number tends to exceed 20% to 30%, and they really “gum up the works”. So this level is good).
Beth’s monocytes are still hovering around the 10% level. That they have not gone higher is a positive thing. (They could have moved from 10% to 20%, but they didn’t.)
In short, the treatment kills both bad cells and good cells. And we have seen some good cell production in this.
Finally, I saw something I had noted in all of my poking around to learn things about CMML. I emailed Dr. Rossetti about it:
I believe I saw that Beth’s condition, once “dysplastic”, now more exhibited the “myeloproliferative” characteristics. Without knowing exactly what that means, I want to point you to this recent study (again, with the low number of patients from CMML), in a school of thought that may or may not be well accepted, that the shift from myelodysplastic to myeloproliferative properties is really a progression of the disease.
I realize that we are dealing with some pretty nasty stuff — it’s not quite AML, and the low numbers of blasts and other numbers are good. But I hope you can put this into context for us.
And he responded:
The two variants remain largely distinguished by the height of the white count. Beth’s white count is well controlled and her marrow is actually exhibiting lower cellularity than before. Thus, on a clinical basis, I do not think she is transforming.
While there are emerging data suggesting a continuum, this does not seem to be universal. At her young age, I would be inclined to the same treatment either way: first an MTI [methyltransferase inhibitor – Vidaza], then transplant. If at anytime we see evidence of progression, we may consider chemo. At present, I like where we are headed.
The good thing, then: there is no “progression”. Dr. Jalil summed it up: “We want to see the least number of bad cells.” That, he suggested, was the definition of healthy marrow. Even if it’s only at a 20% level.
Over the last couple of days, I’ve been going in to work from 5:00 am till 9:00 am, to get in four hours, before leaving to take Beth to her Vidaza treatments and doctor’s appointments. Wednesday and Thursday she will only have Vidaza treatments, so I’m going to continue go in and work very early in the morning, then leave to take her to her treatments, and then drop her off at home and go back to work for the afternoon, to get full days in. We’ve had to do it this way because all of the older guys started school this week, and I’m trying to take off as little time as possible.
One of my greatest fears is the prospect of taking unpaid time off of work, and thus not having an income during the critical time when Beth is most heavily involved in her transplant process. We learned quite a bit about the transplant procedure and schedule yesterday.
First, there are at least five potential donors who matched on 10 of 10 HLA (DNA) categories. Not all of these are ideal simply because of their age (in their 50’s), but they are continuing to search and there may be more of these folks, as well as some 9 of 10 matches that may be more well suited physically. And again, there needs to be some further testing for all of them. (Apparently in one of the more important categories, Beth has a somewhat rare combination of markers).
Here’s the rough transplant schedule when that occurs:
Daily Outpatient treatment (3 days, -9 to -6, treatment with Kepivance)
Inpatient chemo and radiation, (6 days, -6 to -1, Fludarabine, Busulfan and Thymoglobulin, and two days of total body irradiation).
TRANSPLANT (Day zero)
Daily Outpatient – from approximately days +1 to +30. Daily monitoring (five- to 10-hour stays) at <a href=”http://www.wpaci.org/index.cfm”>West Penn Hospital’s</a>Medical Short Stay (MSS) unit. There is also a 75% chance of an infection that will require a readmission.
Days +31 to +100 – twice-weekly office monitoring.
If there is going to be a relapse, it will most likely occur during the first year after transplant. Two years out from the procedure, the chance of a relapse is minimal (just 1% To 2%). And five years out, that risk is almost nonexistent.
Beth has a roughly 15-20% chance of mortality during this process. In the <a href=”https://johnbugay.wordpress.com/2011/08/23/back-home-from-the-intake-meeting/”> mortality chart provided below</a>, the “immediate complications” include all kinds of infections, as well as acute Graft vs Host (GvH) complications, some of which can be fatal. Some chronic GvH complications can also be fatal, but most are treatable with medications.
The ideal outcome will of course be that Beth can live out a long and healthy life span, with minimal requirements for medications to control GvH symptoms (which can also fade over time).
Early on I told Beth that this was not a disease that she’s temperamentally suited to have. She’s always been more of a person of action: “tell me what to do, and I’ll go and do it.” But there are many uncertainties with this process. Those uncertainties are hard to deal with, but the meetings we had yesterday helped to clear up many questions we’d been having.
Interestingly, Dr. Rossetti is a former Roman Catholic and a convert to Eastern Orthodoxy. We had a bit of a conversation yesterday about church fathers and ancient Rome and T.F. Torrance. Pretty cool.