My Transplant: Bone Marrow Drano

After six months of intensive chemo, I thought I was prepared for whatever the transplant preparatory treatment would do to me. When I asked my doctor the difference between the chemotherapy I had been getting and the chemotherapy I'd be getting for my transplant, she basically told me this: 

Before they were using just enough chemotherapy to keep my cancer at bay but not too much that it would kill me. For the transplant they would be using enough chemotherapy to kill the last bits of cancer in me, but also enough to kill every last bit of ME as well.

(Check out this post for more on TBI, total body irradiation.)

The only way a transplant would be successful was to clean me out to make room for my sister. I dubbed this process Bone Marrow Drano, and imagined it would look something like this:

   Check out Day 0!

Go Donate! Part One - Sign Up

FIRST, answer these questions:
- Are you 18-44 years-old?
- Do you have 25 minutes?
- Do you have a mailing address?
- Do you have access to the internet? (Of course you do - you're reading this post.)

If you answered YES to these questions, you can potentially save a life.

Joining the bone marrow registry is easy. It's so easy that you don't even have to leave your house to do it.

And yet a lot of people still have not joined. There is still a huge need for donors. I wondered, perhaps it's harder than I realized. I mean, I've donated blood a few time (pre-cancer of course), and it took a large chunk out of my day. Most of the people I know who have joined the registry did so during charity runs and Team In Training events. But what about everyone else? Let's face it, we're all so busy these days that we don't have time for even ourselves or our family. Does anyone really have the time?

To find out, I decided to follow my friend Catherine as she signed up online at Be The Match (found here).

A little background on Catherine:

She's an EMT working out of at least three different stations around the Bay Area. She works all hours of the day, and because she picks up as many shifts as she can, she has a different work schedule each week. Not only that, but she's also taking Pre-Med classes on the side and is applying to Grad Schools. She is one of my busiest friends, and I was curious to see if she even had time in her packed schedule to join the registry.

So, I documented her as she signed up online.

STEP ONE: Signing Up

1. Go to this site (Be The Match website) on your laptop, PC, or, in Catherine's case, your iPad.

2. Choose "JOIN"

3. The next few pages, answer a few preliminary questions about your general health.

Click here to view the medical guidelines as set by Be The Match. However, if you are a relatively healthy 18-44 year-old, you meet the guidelines.

4. After the medical guidelines, you fill in your ancestral background. 

This is important. The more diverse the members the better chances are of someone finding a match. While I was a patient at Stanford, my doctors told me that there is a huge demand for Hispanic and Latino donors. Donors and patients with the same ethnic and racial background have a 50% chance of having matching HLAs. (See this post for more on HLA matching.)

Basically, they need more brown people to join the registry.

5. Next, you will need to create an account with Be The Match. 

If you've ever signed up for Facebook or an email account, this will be a breeze.

Optional: Grab a beer!

6. Fill out the Health Questionnaire 

You don't need to go digging through your medical files or call you doctor. These questions are brief, easy Yes-No questions.

7. After that, you will probably see this: "You have met the health guidelines to join the registry!" 

Good job!

8. Next, give your donor information.

Basic contact information is needed:
- your name
- a contact number
- an email
- at least one other contact. (In case they can't reach you through phone or email, add at least one additional contact so they will be able to contact you quickly if you are a match.)

9. Answer two Yes/No questions about your donation experience.

10. Request Kit.

Here's where you add your mailing address so they can send you the mouth swabs (covered in the upcoming Part Two).

NOTE: This entire process is completely FREE. You do NOT have to pay a cent. On this same page, you can donate as much as you like, but it's not required. It cost about $50 to process the kit, and many of my friends donated this amount when given the option.

Once you've entered your mailing address, (and an optional donation), you're done! Good job!

Thank you for giving patients hope!

This entire process took 23.09 minutes, and that included a little beer, music, and chatting while the pages loaded.

If you have 23 minutes, you can sign up to join the registry. It's so easy, even the busiest person can do it.

Check out my next post for Part Two - Swabbing It Up and then Part Three - You Are the Chosen One.
                 

What The Heck Is A Bone Marrow Transplant Anyway?

According to the dictionary app on my computer:

TRANSPLANT (v): to move or transfer (something) to another place or situation, typically with some effort or upheaval; to replant (a plant) in another place; to remove (living tissue or an organ) and implant in another part of the body or in another body.

Ok, a transplant seems easy enough to understand. Now, let's add a bunch of confusing words and letters!

BMT, PBSCT, hematopoietic, SCT, HSCT, autologous, allogeneic, syngeneic, GHVD, cGHVD, immunossuppressantssssss...

What just happened? Let's face it, transplants are complicated. Every time I try to explain my transplant to a friend, I talk myself into a corner or run away screaming about witchcraft and sorcery. There are so many different types of transplants, different ways to obtain transplant material, different ways to transplant that material... medical science has advance to confusing and exhausting heights.

What is bone marrow?

For me, the key to understanding a transplant is to understand what bone marrow is.

In bone marrow lives hematopoietic stem cells, also known as blood-forming stem cells.

Hematopoietic stem cells perform a variety of tasks including. They (1) divide into more blood-forming stem cells or (2) mature into one of three types of blood cells: white blood cells (infection fighters), red blood cells (oxygen mules), and platelets (blood clotters).    

You can find hematopoietic stem cells in not only bone marrow, but in the bloodstream (called peripheral blood stem cells, or PBSCs), or in umbilical cords.

Cells from all these sites can be used in a transplant. (Check out this post to see what color stem cells are!)

Wait, I thought a bone marrow transplant meant you harvested bone marrow and transplanted it into someone else. What's all this talk about hemato...whatevers? 

Basically, a transplant involves the stem cells found in the bone marrow, so often a bone marrow transplant (BMT) and a stem cell transplant (SCT) are interchangeable. These days, (to clear up confusion - or add confusion), a more general term can be used: hematopoietic stem cell transplant (HSCT).  

Originally doctors thought that hematopoietic stem cells could only be found in the bone marrow, hence the term bone marrow transplant, BMT. In the old days a BMT involved invasive surgeries for both the donor and recipient, where they would take a chunk of bone. (These types of transplants only happen now in very RARE circumstances because it is very dangerous.)

These days, however, the discovery of hematopoietic stem cells in the bloodstream has changed both how stem cells are harvested from the donor and how they are transplanted into the recipient. A peripheral blood stem cell transplant (PBSCT) is the most COMMON type of transplant with regards to leukemias and blood cancers.

PBSCT are less invasive and relatively painless for both donor and recipient. (More on donating PBSCs/bone marrow later this month.)

So, why all the acronyms?

I don't know, really. Doctors seem to love 'em. Here are some acronyms you may have heard:

BMT: Bone Marrow Transplant
SCT: Stem Cell Transplant
PBSCT: Peripheral Blood Stem Cell Transplant (often shorted to SCT)
HSCT: Hematopoietic Stem Cell Transplant
GVHD: Graft Versus Host Disease (Stay tuned for more about GVHD)
cGVHD: Chronic Graft Versus Host Disease
TGIF: Thank God It's Friday (See tomorrow)

My Transplant: The Odds - Part Three

Check out Part One and Part Two.

At 25 I had a 1 in 3 chance that I would get cancer. After I was in remission I had a 50% chance of relapse. With a transplant, my chance of relapse dropped to 20% - as long as I found a donor.

So, what were the odds that my sister would be a 100% match?

How did they even find out how she was a match? Well, through lot of confusing science involving an acronym "HLA".

HLA, or Human Leukocyte Antigens, are proteins located on white blood cells and on tissues in the body. Two people with matching HLAs means their tissues are immunologically compatible with each other. This HLA typing is the same process they use to match kidneys and other organs with siblings, relatives and other possible donors.

Remember your high school biology class when you talked about genes and how a spotted cat has a stripped brother? Yeah, me either.

It's all about what you inherit from your mom and dad. In the diagram, each person has two colored circles, each circle represents HLA groupings you inherit from your parents.

As a general rule, you have a 25% chance that one of your siblings is an identical HLA match. The further you go leave your genetic branch on the family tree, the less chance you have of finding a match. For instance, the chance of an HLA match with one of your parents or children is 12.5% and decreases on from there.

(Click here to check out more about HLA matching. It was created for matching kidney donors, but is a good guide to understanding HLA.)

So, the more siblings you have the higher chance you have of having a match, right? Yes and no. I have one sibling, and she was a 10/10 HLA match. Yet I met one woman who had nine siblings and none of her siblings were a match.

In other words, the more donors out there, the greater the chance to find a donor - related or unrelated. And all the more reason to support cancer research.

When matching donors, doctors look for certain HLA markers. Check out Be the Match for a great diagram about HLA markers. Some places look at 8 markers, some look at 10 - hence the 10/10 or 8/8 ratio.

The odds that my sister would be a match was 25%. The odds that she would be a 10/10 match was even slimmer. Who would have thought the kid who pushed me down the stairs during a little innocent roughhousing would go on to save my life?

And those were my odds of survival during chemo, a transplant, and the rest of my life. My most recent bone marrow biopsy results showed that I am now genetically 98% my sister, leaving me with a 2% chance of relapse. That's pretty good considering the odds from the beginning.

Stay tuned for when I show how a chimera like myself can get away with murder.

My Transplant: The Odds - Part Two

Check out Part One.

As I headed into consolidation (phase 2 of my protocol) I was in remission and had a 90% survival rate. Chemo was wrecking my body, and I felt like dying everyday, but as long as I stuck with the chemo protocol, I was going to have a good chance of survival.

The idea of a transplant always hung heavily in the back of my mind. A transplant terrified me. I had heard so many horror stories about BMTs that I equated a transplant with a death sentence. Fortunately, all the nurses and doctors on my hematology team assured me that a transplant would be unlikely.

Yet my doctors still wanted me to meet with a Bone Marrow Transplant doctor to set up a contingency plan should the worse happen and chemotherapy stopped working. I didn't want to see a BMT doctor. Despite feeling horrible from the medicine, I was sure the chemotherapy was working.

So, when I finally went to see a BMT doctor I was expecting her to tell me just what everyone else had told me: that I would never need a transplant.

Unfortunately, she said a transplant was my best option for survival.

Back during Induction I discovered I had abnormal cytogenetics. The genetics of my cancer had a few abnormalities that would make it difficult to maintain a strong remission. A few chromosomes were missing, and a few had extra bits that didn't belong.

These abnormalities knocked my odds from 90% down to 50%. No matter what chemo regiment I was on, due to the genetics of my cancer, I had a 50/50 chance of relapse. I was devastated. It felt as if I had just been diagnosed with cancer all over again.

My odds had drastically changed and I had another huge decision to make: stick with chemo and a 50% chance of relapse, or get a transplant which would lower that relapse rate to 20%-25%.

Okay, sounds like an easy choice on paper. As there is no proven cure for cancer (yet), the best you can do is lower your odds for relapse. But a transplant is biologically life changing, and has way more lifetime side effects than a few years of chemotherapy. (Stay tuned this month for more on lifetime side effects of a transplant.)

I went back to my hematologist for advice on what choice to make: chemo or transplant?

She told me more about my odds on the Pediatric Protocol, and explained to me I couldn't really trust all the statistics and percentages for the chemotherapy protocol. Adults usually didn't get ALL. It's thought of as a childhood cancer.

Check out the National Cancer Institute SEER website if you are as obsessed with statistics as I am.

Basically, all the data is grouped into two categories: age 20 and under (child) and age 20 and older (adult). This leads to my situation: a 25 year olds gets the same survival odds as an 85 year old. There's just not enough data for that middle group of 20-34 year olds with ALL.

So, on the advice of both my BMT doctor and hematologist, I chose the transplant and hoped it wouldn't kill me.

Fortunately I had a donor waiting in the wings. Check out The Odds - Part Three for more on the odds of finding a match.

My Transplant: The Odds - Part One

The moment you are diagnosed with cancer, your world shrinks to the size of a pea. Suddenly the only language you speak is the language of statistics and percentages.

I constantly harass my doctors to give me the odds: the odds of the chemotherapy working, the odds that I'll go into remission, the odds that I'd have to have a transplant, the odds that I would relapse, the odds that the transplant will keep...

When I was first diagnosed in late 2011, due to the basic stats of my age, sex, and health, I had a 60% chance of survival. In hindsight, 60% is better than 50%, however a 60% survival rate also meant I had a 40% chance that cancer would do me in. And anything less that a 100% chance of survival is devastating no matter what your odds.

I always imagined it this way: For every three ALL patients, one will die.

I knew the odds. After I met with my hematologist, I had a big decision to make: which chemotherapy regiment did I want to try. Basically I had two options, each with its own set of odds:

Choosing the Adult Protocol: My odds were the same - 60% survival rate.

Choosing the Pediatric Protocol: IN CHILDREN, the odds were 80% I'd go into remission. NO concrete data (yet - see below) for adult patients who've undergone this protocol.

There is currently a clinical trial found here that is gathering data for the effectiveness of using the Pediatric Protocol on adult patients. While I was diagnosed this clinical trial still had five more years before any concrete data could be gathered.

It all comes down to what set of data the odds are pulled from.

The Pediatric Protocol odds are based on data gathered from cases of children under the age of 18-20. The Adult Protocol is based on data gathered from adults ages 20 and up to 85

I was 25. Technically, I fell into the adult category. The alluring 80% survival rate was based on cases of children with cancer, not adults with cancer. According to my doctors, there is a huge difference between how children and adults accept chemotherapy treatment.

So my choice was this: choose a proven 60% survival rate from a protocol designed for my specific age group, or choose a protocol that had very little data, positive or negative, to back it up.

Upon my hematologist's advice, I chose the Pediatric Protocol. After Induction (described here, or check out all these and these), I was in remission, and my doctors put my odds at 90% survival.

But, despite these odds, there was still that spot of red, that chance of relapse. So, I needed a Plan B in case the chemotherapy failed to work or if I relapsed after remission.

Plan B was a bone marrow transplant, and for a while I didn't think I'd ever need that option.

Stay turned later this week for The Odds - Part Two.

Marrow Month

Welcome to May, the month I've unofficially dubbed as Marrow Month. I received my transplant May 2012, and I thought I would take this month to post about all things transplant and try to inspire people to join the bone marrow registry.

As the anniversary of my transplant approaches, I saw these two amazing articles:

This story about a little girl who is now in remission because of a new form of treatment using her own "reprogrammed" T-cells. This is an amazing and effective treatment for patients who no longer have the option of chemotherapy or a bone marrow transplant, and an example of how far cancer treatment has come in the last few decades.  

And this story about an athlete donating marrow to a patient.

I think it's amazing what this young man is doing for a complete stranger, and he is an example that everyone should strive for.

I'm actually kind of jealous of this donor! They're going to put him out while they drill into his bone and stick a needle into his hip to take the transplant material. I'm always awake when they do that to me during my biopsies! Ha! Lucky bastard.

Keep in mind: The majority of bone marrow donations and transplants, however, DO NOT involve surgery. I'm actually surprised that he has to undergo surgery for this donation. According to my doctors, it is only in very extreme cases that they have to harvest material directly from the marrow during surgery. The vast majority of donations involve a few pokes with a needle.

Basically, if you've ever given blood, you already have an idea of what the donation procedure would be like.

This month I'm going to be blogging about all things transplant, from the moment a donor decides to join the registry to life after transplant. If you've ever been interested in the process from start to finish, or you just like looking at poorly drawn illustrations and diagrams, stay tuned this month!  

Make May your Marrow month and join the marrow registry!

Click here today and join through Be the Match.