Vampire Bride III in earnest today

A couple of days ago, we thought Beth might go in for another blood transfusion, but that didn’t quite work out. Today I’m planning to take her in for a couple of units. As I mentioned yesterday, her cut-off point is a hemoglobin level of 8.5. She’s getting this transfusion because she’s at 8.4. She got her last transfusions at 6.9; maybe these today will bring her up to a level of “refreshing” that she hasn’t experienced for quite some time. Just in time for Vidaza next week.

Yesterday I met with my pastor, Matt, and some deacons from the church. They are so incredibly gracious. It is a tremendous blessing to be a part of such a community.

What’s coming up

We’ve traveled through a relatively uneventful time in this illness. Beth mostly sleeps a lot, and takes in some blood every once in a while. Now we’ve got a little flurry of activity coming up, and we should learn some important things.

Beth’s hemoglobin level fell below the magical 8.5 level, to 8.4, and so she’ll be going in for another transfusion: type-and-cross-match today, and two units on Wednesday. One of the things that I’ve read on the CMML discussion boards is that there is a kind of deep-down body pain that you get – it’s the pain that prevented her from working back in June – and my thought is that 8.5 + two units will take her to a point at which she won’t have to deal with that for a while.

Then next Monday, August 22, she’ll begin Vidaza Cycle 3, and on the 23rd we’ll have our big Intake Meeting with Dr. James Rossetti from West Penn Hospital. (West Penn is an MDS Center of Excellence ).

We should find out a number of things that day, not least of which will be the status of the donor search, the course of treatment, schedules, and various other odds and ends, I’m sure.

We can still use your help. Please feel free to use the buttons below to like and share these blog posts of mine, and also, be sure to like and share Bethany’s Facebook page and don’t forget we need your help financially as well. Thank you.

Vidaza, Cycle 2

Beth is finishing up her second five-day “cycle” of Vidaza (which runs for five days, then three weeks off). My son Zach has been kind enough to take time off so he could take his mom to the doctor’s office so she could get this treatment. Even though it’s not strictly “chemotherapy,” it still kicks her in the butt and wipes her out.

I was talking with someone about this yesterday, and I accidentally said that she was having her Viagra treatment. I guess that’s an understandable Freudian slip. Something like this makes you feel weak and helpless. We are truly grateful to everyone for their help and prayers.

“Vampire Bride”

Beth is in a “pre-conditioning” phase at this point. She had her first round of Vidaza, a low-intensity, genetic-based chemotherapy, from June 25-29 (five days). She gets three weeks off from that, then begins another round July 25. The doctors have told us that she will undergo either “two or three cycles” of Vidaza. At that point, we think, she will be ready for “conditioning” – the really hard stuff, which I’ve seen described as “intensive chemotherapy and full-body radiation”, the intent of which is to kill as much of the disease as possible, followed by the “bone marrow transplant.”

(I keep putting that in “quotes” because it’s not really “bone marrow” that gets transplanted, it’s stem cells from the blood of either an anonymous adult donor or blood from umbilical cords.)

She actually worked last night and has plans to be working each of the next seven nights – she’s keeping an obligation she made several months ago to cover for a friend who was going on vacation. Her nurse said that’s a good way to keep her mind focused on something other than her illness.

Physically, she seems to be tired a good bit, and she tends to get discouraged a lot. That said, she seems to be responding well to the first round of treatment.

The MDS mostly affects pre-blood cells called “blasts”. These “blast” cells are like primordial blood cells – in healthy people, they “grow up” and differentiate into red blood cells, white blood cells, and platelets. The cancer process somehow prevents these “blasts” from growing up. They remain as blasts, and they remain in the bone marrow, where they continue to “gum up the works”.

So as her red and white blood cells die off (and they do in all of us), they are not replaced. Whether the diagnosis is MDS or a more aggressive form of leukemia really depends on the speed at which this process occurs. But my understanding is that it is the same process.

They treat symptoms of tiredness with blood transfusions, and they watch her hemoglobin levels closely. Let me give you an example: she also worked last weekend (Friday, Saturday and Sunday nights). Last Thursday, her blood level was down to 8.2 (normal is 12-15) – this makes her feel crappy, and is low enough for her to require a transfusion (I think if it falls below 8.5 they want to give her blood).

Because it was a holiday weekend, there wasn’t enough time to make arrangements for her to get her transfusion. (Two pints of blood – it takes about 6 or hours for that entire process.) So she worked all weekend, and had her blood tests again on Tuesday. The good news is that her blood level stayed at 8.2. (That is, with all the hard work, and all the dying off of red blood cells, and she still managed to keep her level. That indicates that the Vidaza is enabling her body to produce its own blood cells.)

We did manage to get her to the hospital on Wednesday this week for her two-pint transfusion. I was calling her my “vampire bride”.

But the hard part is yet to come.

Beth came home from the hospital yesterday

I brought Beth home from the hospital yesterday. She’s completed her first round of Vidaza – five days’-worth of it – and now she’ll get a three week respite from IVs. But there is still going to be a fairly intensive regiment of “taking blood levels” and, if necessary, blood transfusions.

The Vidaza is supposed to inhibit some of the cancer process and enable her to make her own blood. Which is a good thing. But it will also work to begin to suppress her immune system in anticipation of the transplant.

Some of these effects will become evident in days 10-14 of this “course” or “cycle”. I’m not sure what that will mean; but we’ve got to be careful about keeping the house clean, washing our hands so as not to spread infections, and things like that. I’m glad this is happening in the summer.

Beth still wants to go to work this weekend, and also to fill in, as she had promised, the week of July 11 for her friend Cindy, who has been planning to take a vacation. She’s doing this for a couple of reasons – out of loyalty to a friend, to be sure, and also to try to earn some extra money now, while she is still able to do it.

In theory this is possible, according to the doctor. She is able to maintain her activity levels for now. But in practice, she’ll be exposing herself to some possible infections. The next course of Vidaza is scheduled to begin July 23. We’re not sure if that will be the last, or if there will be one more. But once the “conditioning” begins for the transplant, then she’s a resident of West Penn Hospital for a while, and she won’t really be able to emerge to “real life” for at least several months.

We found out an interesting side effect of this process. She’ll likely emerge with a completely different blood type, and a brand new immune system. The donor match takes into account about a thousand different variables, but blood type is not one of them. They’re going to completely “re-format the hard drive,” so to speak. She’ll also need to undergo all of her childhood vaccinations as well. All of those six-months, nine-month fifteen month shots that babies have to go through – she’ll have to re-do those as well.

Vidaza vs CMML, and the graft-vs-tumor effect

We met with Dr. James Rossetti yesterday, who is going to be my wife’s doctor overseeing her treatment.

He gave us an overview of the complete diagnosis, and we finally got a complete overview of the treatment plan:

1. Two or three courses of Vidaza to try to slow or mitigate the effects of the disease (which is the CMML version of the various Myelodysplastic syndromes).

2. Then she will undergo a “conditioning” period of intense chemo and full-body radiation.

3. The bone marrow transplant which will really be an infusion of adult stem-cells from an anonymous donor (“www.bethematch.org”).

4. Follow-up to check on the effects of the transplant.

The expectation is that the Vidaza will reduce her overall “risk level” and strengthen her body for “conditioning”, which will kill most if not all of the cancer-causing function. (The “risk level” is the risk that the disease will further progress and turn into leukemia). The “transplant” will then do two things: put new stem cells into her body to repopulate her bone marrow, and rely on the “the graft-vs-tumor effect” to suppress and kill any latent cancer function within her body.

At the beginning of this process, there is a 50% chance now that she can see a complete cure. As we move forward, and as things don’t go wrong, the hope is that those odds will rise. The main challenges in this process would be the dangers from the Vidaza (which she seems to be tolerating very well right now), infection down the road, the “conditioning” process, and of course, the big one would involve complications arising from the host-vs-donor or donor-vs-host process. If she is in good shape six months from now, we can be very hopeful, and at the two-year mark, there is something like a 98% chance that she will be completely cured of this.

Thanks for your ongoing prayers.

Beth is being treated with “Vidaza”

I’m really grateful to those of you who have expressed your prayers and support for Beth. This is a bit of a whirlwind time for us – getting a diagnosis that has “leukemia” in it is quite a shock.

We’ve been working hard over the last year and a half or so. I’m a writer at Black Box Corporation, and Beth is a supervisor and med tech at Overlook Green Assisted Living Center. Typically, she works nights, and I work days – we do this so that one of us is always home for our six-year-old. And it’s been a tough road. We barely have time to see each other.

To have this thrown in on top of that really upsets the apple cart.

Janine, a woman from my church, who is a breast cancer survivor, told me last week that, when you’re going through something like this, humor truly is the best medicine. In that spirit, my son John 3.0 has been working overtime. There are, for example, hand sanitizer dispensers all over the place. John will get a handful of clear, invisible hand sanitizer. He’ll bide his time, until he finds an unsuspecting victim, like his brother Nate (or me). He’ll then fake a sneeze into his hand and immediately wipe the sanitizer onto his victim’s arm or hand and say “excuse me”. Ha ha.

The drug regimen
One thing we haven’t yet talked with our doctor about is the fact that “the median survival” rate of patients who have what Bethany has – (IPSS intermediate-2 and high-risk MDS – levels 3 and 4 on the chart) is still less than 24 months. Mitigating that number in our favor is the fact that she is at the very young end of the scale for this disease – most patients with this disease are over 70 – and the fact that we can look forward to the bone marrow transplant, which offers “a complete cure” in about 50% of cases.

Beth specifically has the CMML variety of MDS. What seems to be most amazing is the drug that Beth is going to be given, Vidaza (see also here). While not strictly a “chemotherapy”, in layman’s terms, this drug “affects the genes that differentiate blood cells.”

That is, CMML is a cancer (specifically among the various types of MDS) that inhibits “immature” blood cells, or “blasts” from “growing up” and becoming normal blood cells. In this disease, these “blasts” then seem to hang around in the bone marrow and further to “gum it up,” all of which is a pretty severe degenerative process.

The Vidaza seems to interface directly (and at a genetic level) with the process that prevents “blasts” from becoming normal blood cells. In the process, her own body will be enabled to produce more of its own normal blood cells, and the degenerative process is inhibited, if not outright eliminated. I’ve read stories that this drug alone can cause a “complete remission,” although, as with everything, you have to understand that these are only individual results that don’t take into account the entire context of treatment.

She has already had her first treatment last night, and she says she feels all right with it.