An Open Letter to Robin Roberts on her MDS diagnosis

A Guest Post by Bethany Bugay

People are sending me emails about Robin Roberts from ABC’s Good Morning America Show. And I wanted to respond directly.

 

Dear Robin:

I read about your diagnosis of MDS. “MDS” (“myelodysplastic syndromes”) is a very broad category, and it’s probably a preliminary diagnosis. Thanks to genetic studies over the last 10 years, doctors can define which type of pre-leukemia you have, very precisely. They can and will come up with a more precise diagnosis.

Along with the precise definition of the disease, there are a number of new drugs which can very precisely address the specific genetic malady that you are dealing with. These drugs are better than plain old chemotherapy, but they’ll also continue to break down your body. Because this affects your blood, you may feel fatigued and lethargic. You may not be able to control your own body. Your immune system will become compromised, and you’ll become susceptible to infections, of the skin, intestines, and other things.

All of this is before they begin the “conditioning” phase, of radiation and chemotherapy.

You have a very good chance of beating this disease. There is a “cure,” in a procedure they call a bone marrow transplant, or a stem cell transplant. But it won’t be an easier path than the one you tracked with your breast cancer treatment, I’m sure.

You are already ahead of the game, because your sister is already able to be a donor. For me, the donor selection process was very long and complicated, because the doctors had to search for a “matched unrelated donor” (“MUD”).

It is all very scary even if you know that the doctors are prepared, (very prepared) for anything that comes along.

You are a very brave and strong woman. For you, this is round two of a battle with a type of cancer. You are more aware than most others what you’ll have to go through again because of your battle with breast cancer.

You said you plan to continue working. Fear of dying can be horrific. In some ways, it’s true, that work can distract you from your troubles. But the old saying is also true: nobody fighting cancer wishes that they had spent more time at the office.

You also said, “I will miss a chunk of time.” I expect that you might also lose a piece of your identity. You are a go getter, but you may not ultimately have total control of her body. No matter that you have had cancer before. To replay a hardship will maybe be harder because the expectations will differ. It may be depressing, and more emotional.

The “transplant” itself is uneventful. But when your new stem cells drain into your system, that’s when the true war to survive begins. Your body can feel completely debilitated. The process to build up body systems feels like coming back from the dead.  But you are going to do it again.

We pray for your strength to exceed what you had before, and for you to never, ever give up. Once the main battle is over, life is sweet again. You will come out of the dark, and you will even enjoy things that bothered you before, like standing in long lines at Wal-Mart, or even driving in heavy traffic again.

We pray for peace for you, and help for one going into a long darkness.

Bethany Bugay

Fingernails are falling off

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And it is a bit painful, too. This happened, we hear, because she almost died, and her nails came closer to death than she did; so the old ones stopped growing, and the new ones started. So it’s the old dead ones being pushed out and now falling off.

Watching the CMV numbers

Dr Rossetti stopped by today, and of all the things Beth is suffering from (“one day at a time”), the thing that represents the most danger is the CMV virus, which manifests no symptoms. Nevertheless, here’s why this is dangerous:

Patients who have received marrow transplants undergo ablative chemotherapy and/or radiation. A period of neutropenia and a loss of specific antigen reactivity follow. All transplant recipients have a period of decreased CMV-specific cell-mediated immunity. The next step is unknown; however, patients at greatest risk for CMV disease develop viremia (virus in the blood). The role viremia plays in the pathophysiology of CMV disease is unknown.

Life-threatening CMV pneumonia may develop in immunocompromised patients, with the incidence varying based on the type of transplant received. Patients who receive marrow, lung, heart, heart-lung, liver, pancreas-kidney, and kidney transplants have different levels of immunosuppression. Those most at risk include bone-marrow transplant recipients and recipients of lung transplants. In patients who have received marrow transplants, CMV disease is most likely 30-60 days after transplant. Fatal CMV pneumonia is much less common in patients who have received solid organ transplants than in those who have received marrow transplants. Patients may initially present with an asymptomatic infiltrate on chest radiograph.

Beth’s numbers on this viral infection are going up and down. She is receiving Ganciclovir (“Cytovene”), an antiviral, for this. We should be getting more “titer” numbers on this tomorrow.

Denise Sproul

I only met her because I was a Facebook friend of her husband, R.C. Sproul, Jr., whom I know simply through a network of friends. Denise died today from relapsed AML (Acute Myeloid Leukemia). That’s the more aggressive version of what Beth has/had (sort of). Same family of leukemias. She had been hoping to receive a second bone marrow transplant, but that never came about.

Blessed are they that die in the Lord.

She was diagnosed in February 2011.

Today is the day

Today is the day we’ve been waiting for. It’s the day of our “bone marrow transplant” (or “stem cell transplant”). It’s “day zero”.

We talked with the transplant coordinator yesterday. The donor gave “plenty” of stem cells in one day, and everything else went fine. The donor “made lots of cells” – It’s “just what we wanted”. So as I write this, they should be on an international flight – the “bag” that the cells come in is a very small one.

If you think of a one-pint transfusion, which might take a couple of hours, the new stem cells should take about five minutes to transfuse into her. The entire thing is anticlimactic, compared with all the other things that have been going on. The “transplant” should occur some time after 7:00 pm tonight.

A little bit of graft-vs-host

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.”

I’ve posted on several occasions something that I called “an account of a successful bone marrow transplant”. That individual had the transplant on June 21 – some four months ago. Now, here’s what he’s going through:

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.

“What could go wrong?”

My friend, co-worker, cubicle neighbor and lunch buddy Andy was joking yesterday that his young daughter frequently asks the rhetorical question, “what could go wrong?”

Well, in the case of a bone marrow transplant, plenty can go wrong.

I came across this summary just a while ago, and I thought I’d pass it along:

Problems that may come up shortly after transplant

This is a review of some of the more common problems that may happen shortly after transplant. Many of them come from having the bone marrow wiped out by medicines or radiation just before the transplant. Others may result from the specific medicines that are used for the conditioning phase, or from the radiation. This is not a complete list and you can read more here…