Account of a successful Bone Marrow Transplant

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.

Bone Marrow Transplant

According to our doctor: “this is the only curative option”
In spite of all that has happened, we are still at the beginning of this process. What has happened up to this point is merely preparative. With this disease, all roads lead to the bone marrow transplant.

Standard chemotherapy won’t help her. Bethany’s bone marrow is damaged, so even if chemotherapies could be given that would put her into “complete remission,” that is, to eliminate all the cancerous effects from her blood, it wouldn’t last, because her bone marrow is damaged, and her damaged bone marrow would continue to replicate the leukemia process. My understanding is that these treatments work for a while, but they will eventually fail.

So, as Dr. Rossetti reminds us, “The only curative option remains allogeneic (non-related donor) transplantation.” And as a part of this process, there are still several milestones that we need to look forward to.

Finding a donor
Even though we have a number of potential donor matches, we still haven’t found that ideal person. They are looking for someone who can match on 10/10 DNA markers. So far, there are six potential “10/10” matches, but none of these is ideal. Most, for example, are older females, who have had children; antigens developed during pregnancies that can contribute to complications during the process that follows.

The dangers, as I understand it, are not that the cancer is less cured. The danger is that the graft vs. host complications will be more severe. So the donor search process is an attempt to minimize that part of it.

The “Bone Marrow Transplant” (BMT)
This is the biggie. The bone marrow transplant is a “transplant” in the same sense of a kidney or heart transplant. Something old is removed, and something totally new is put in. However, unlike a traditional transplant, which is usually a one-time surgical procedure, this one is a longer term process. Much longer.

To get out the old, they can’t just open her up and take out the bone marrow. They have to kill it, and they’ll do it with “intensive chemotherapy” and full body radiation. This process will last a little over a week, and if it sounds harsh, it is.

Simultaneously, the selected donor will be given Neupogen injections for 5-6 days, to prompt his or her stem cells to move from the bone marrow to the blood; on day five of the Neupogen injections, they’ll be hooked up to a dialysis-type of unit; blood will flow out one arm, the stem cells will be harvested by a machine, and then the blood will flow back into the other arm.

When enough stem cells are collected, the bag of stem cells will be flown into Pittsburgh, where Bethany will have already been prepared by the process described above. The implantation of the cells process itself is simple. Some of the blogs I’ve read have even described it as a bit of a let-down, just something like another blood transfusion. But the results are spectacularly different.

“Engraftment”: First 30 Days
Many things can go wrong during this first phase. If we were to go to UPMC, this would be an inpatient process, lasting four to six weeks. At West Penn, they say that patients respond better by being home. (Dani wouldn’t be permitted into the hospital; they’re pretty firm about that.) So Beth will be permitted to go home every evening, and then will need to return to the medical short stay unit, every day for 30 days.

(Note to Highmark: Our understanding is that we will be required to pay the $30.00 co-pay each and every day we show up there. Is there some way that you can streamline this clunky procedure? West Penn is already saving you oodles of cash by making this an outpatient procedure; the least you can do is streamline your paperwork to make it easier for a patient who’s near death.)

During this time, the chemo is still raging; Beth’s hair will fall out, she’ll experience nausea, vomiting and diarrhea, won’t be able to eat. Her immune system will have been wiped out. She’ll be ultra-sensitive to infections, and it’s very likely she’ll need to be admitted to treat infections anyway.

The expectation is that the new stem cells will go to where they’re needed most, that is, into the now-dead bone marrow, and set up shop. This is called engraftment. As part of the daily checking, is checking for signs that this is happening. There is about a 5% chance that engraftment will fail.

Acute “Graft vs. Host Disease” (GVHD): 30 days-100 Days
During this time, Beth’s immune system will be severely depleted, but the expectation is that the new stem cells will have their own immunity. To some degree, this is very desirable, because the new immune system can kill off any remaining cancer in the bone marrow.

But on the other hand, the new stem cells can, to one degree or another, begin to reject Beth’s own tissue. This is called Graft vs. Host Disease. Symptoms can range from simple skin rashes and mouth sores, to more complicated issues dealing with organs such as kidneys, liver, and lungs. Often, I am told, the symptoms from the anti-rejection drugs can be worse than the GvH symptoms themselves.

She will also be susceptible to infections during this time period, including pneumonia, which can be life-threatening.

Chronic GVHD: +100 days to One Year
After 100 days, the new stem cell engraftment will have begun producing its own new stem cells, and for some reason, a whole new round of “rejection” can occur. Too, some of them can be fatal. has prepared a brief presentation that walks through this phase of the process.

The ideal outcome
The ideal outcome, then is simply to get all through all of this. Most of the GvH symptoms will diminish over time. There is still some danger of relapse at this point. But from what Dr. Rossetti tells us, if you can get past the two-year mark, the chances of living out a normal life-span are excellent.

One survivor who I’ve been in contact with has told me about the “survivor dinners,” where “There are a lot of people who are many years past transplant and look great and do not have any ongoing issues”. That’s something we can look forward to.

Here, again, is the prognosis:

  • 30% cure;
  • 20% immediate complications;
  • 15% major longer-term complications;
  • 35% chance of relapse.

Please keep us in your prayers, and please, also, consider helping us out financially.

Three reasons why I’m writing this journal

1. We want to persuade the press, the VA, the military, the federal government, that there are consequences to the military’s policies. Even the little ones.

  • In March 2003 Bethany completed the Army’s “Field Sanitation Course” (see image below).
  • In May 2003, especially, when Beth was part of an advance group, she was heavily involved with “burning trash and human waste”, shown in the photos below.
  • She wrote about it in a letter dated March 14, the scan of the hand-written page.
  • This activity, “burning diesel fuel” is known to produce the chemical Benzene.
  • Benzene is a known human carcinogen. And, being directly involved with this activity, Bethany was heavily exposed to the benzene that was produced.
  • Thus, we hope to persuade that, because of the U.S. Army’s official policies, Bethany was exposed to Benzene in large enough quantities that it is clearly identifiable that these incidents are the cause of her current cancer (leukemia), as well as similar ailments in other soldiers who have served in Iraq and Afghanistan.

2. Beyond persuading the official parties listed above of the sequence of events listed above, we hope to reach a wide and sympathetic audience, and persuade them that we continue to need financial help as we work through this time in preparation of a bone marrow transplant.

3. We want to tell a compelling story of a family’s struggles through this past decade when it was said that “9/11 changed everything.”

Beth was trained for "burn pit" activity
Burning trash and human waste
Describing the activity in a letter, dated May 14, 2003

More photos are here:

Please share this information. Hover over the “share” button just below this paragraph. You’ll see the various ways in which you can share this message with others. If anyone knows of other soldiers who have come down with leukemia because of burn pit activities, we’d love to know that story. We’d love the opportunity to put our voices together and tell a larger story. We’d love to make certain that this story gets the kind of publicity that it deserves.

It’s going to be a busy week

It’s going to be a busy week for us. Beth has a doctor’s appointment today and our big “intake meeting” with the transplant folks tomorrow. I expect that we’ll learn what treatment is going to be like for the coming months, the status or our donor search, maybe get some clarifications on the diagnosis and prognosis, and a lot more. Meanwhile, Beth begins Vidaza, Cycle 3 this week as well.

Beth had a pretty good weekend; we visited my cousin Walt, who is also a veteran; he recently had heart bypass surgery, and he gave us a pretty good report about how to navigate the VA system. There’s one difference: he’s a Vietnam veteran, and much of what the VA will cover from that conflict is settled; we are still waiting on a study by the VA on the topic of the “Long-term Health Consequences of Exposure to Burn Pits in Iraq and Afghanistan”. Stay tuned.

The car situation is going to be much complicated from here out, as the older guys start school today; two of them will begin the CCAC Nursing School program, and a third is starting general studies there as well. There are five of us going different places, and three cars. The younger kids start school next week. Fortunately, recent changes in the school bus schedules don’t seem to have affected us.

Beth was crying last night when I got home

She woke up yesterday with a new pain in her spleen. An enlarged spleen is one of the symptoms of CMML (chronic myelomonocytic leukemia). This Detailed Guide to CMML by the American Cancer Society is one of the best that I’ve found, and it gives a fairly complete overview of this disease. I’ve also found this 2005 summary from the National Institutes of Health (NIH) : “Intensive chemotherapy alone is of little benefit, and stem cell transplantation is the only curative modality in the small number of eligible patients, although outcome remains suboptimal.”

That doesn’t strike me as too hopeful, though it is easy simply to be bewildered by this disease. As medical science has learned more and more about it through DNA, it has been found to be more rare than at first thought. Originally, Beth was diagnosed with MDS (a pre-leukemia with certain tell-tale signs), but after a second biopsy, her diagnosis was changed to CMML (more specifically dysplastic CMML-2).

One thing that you don’t see much of is the prognosis for CMML patients who undergo a Bone Marrow Transplant (BMT). That’s because the population of these patients is so small. There are only about 1,100 cases diagnosed each year — and 90% of them in people over 60 who can’t have the BMT.

I’ve also found this overview in the France-based Atlas of Genetics and Cytogenetics in Oncology and Haematology :

The median survival for patients with CMML is about 24 months. … Of adult patients who underwent allogeneic bone marrow transplantation the disease-free survival was 39% at 3 years.

But this disease is so rare, the population upon which this study was based is very very small. I believe it is only in the 10s of patients. (They didn’t even study “hundreds” of CMML patients with CMML).

An oncology textbook notes that:

Median survival in CMML is approximately 12 months, with a range from approximately 1 to more than 60 months. …Unfortunately, at this time, unless the patient is a candidate for imatinib therapy or stem cell transplantation, long-term salutary therapeutic effects are uncommon.

But even for those who receive a stem cell or bone marrow transplant, the NIH says:

Allogeneic hematopoietic SCT (HST) offers the only curative potential for patients with chronic myelomonocytic leukemia (CMML). However, there is a paucity of data addressing this approach in CMML. The disease is a relatively under-represented myelodysplastic (MDS)/myeloproliferative subtype among transplant eligible patients. Non-randomized studies suggest that long-term remissions are achievable when using myeloablative or reduced intensity conditioning transplantation. Allogeneic SCT for CMML is often reported as part of MDS registry data. The largest series in adult patients reported a disappointing long-term relapse-free survival (RFS) of 18%. The Fred Hutchinson Cancer and Research Center group reported a 40% long-term RFS for a mixed group of adults and children with CMML who were transplanted over two decades. In this study, we performed a literature search and reviewed available data for adult CMML patients undergoing HST. The dearth of data that span two decades with changing transplant practices prohibited us from performing a formal meta-analysis. However, we elected to present the current status of HST in adult CMML patients. Carefully selected CMML patients may have the most benefit from this curative approach.

Really, this seems to be all that’s available out there.

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.