BMT? SCT? WTH?

An awesome new friend that I gained through this MM journey suggested that I explain what the crap a bone marrow or stem cell transplant is, commonly called a BMT or SCT. I often forget that people don't eat, breathe and live maroon ribbon disease like Cassie and I do, so I often assume that everyone understands what all this means. My bad.

The good and bad thing here is that I am a dummy when it comes to this stuff. Good because I will be able to explain things in simple terms. But bad because I probably misspeak 10-20% of the time so you may get some wrong information. There is a reason why we called our blog MM For Dummies and not MM for Really Smart people. If ONLY Cassie were blogging, we probably could have gone with the latter.

First, here is a simple timeline of the BMT activity:

• 3/16: NeoStar Catheter placement
  
• 3/17: Cytoxan - Chemo
• 3/18: Phil doesn't remember this day (thanks Ativan)
• 3/21: Daily neupogen shots begin
• 3/28: Last neupogen shot
• 3/29: Stem Cell Collection (my stem cells), also called apheresis
  
• 4/4: Christ is Risen, Hallelujah.
  
• 4/5: Receive Melphalan - Chemo
• 4/6: Phil checks into the hospital for a minimum of 15 days
• 4/10ish: Phil's cells die
• 4/10ish: Phil receives his Stem Cells back
• 4/11+: Phil recovers until Phil is Risen, Hallelujah.
  
• 2 months later (Take 2): Phil goes through this process again starting with Melphalan.
  

So what is a BMT and what will recovery look like? For most, the bone marrow transplant will take place only once and if they slip out of remission five years down the road they may go for a second. In my case and for probably 99% of the folks seen down at UAMS, we will be doing a tandem (back to back) transplant, roughly 60 days apart.

Here's how I describe the process for my autologous (my own stem cells) transplant/s. A BMT or SCT is not a surgery, though that seems to be a common misconception. They give me a nasty drug that I just learned is mainline therapy for fighting breast cancer, they start shooting me up with a crazy drug/protein that pump fakes the body out to produce an overabundance of stem cells and pushes the excess into my blood stream, they connect me to a machine where they pull blood out and dump it back into me all while collecting about 6 million of those baby stem cells, they give me the big gun chemo to kill everything and admit me the next day into UMHS, my old under-performing cells get dominated in roughly five days, they give me back a bag or two of my baby stem cells who have missed me, my counts start to return to safe levels during my two week stay in the hospital and they eventually kick me out and tell me to return home and live in a bubble now that I will essentially have no immune system, but hopefully also no cancer and lastly, if that wasn't fun enough the first time, let's do it again to complete the tandem. The End.

So now that folks understand that I am NOT about to undergo a surgery, the next question is what does the recovery timeline look like? First, for a single transplant, I typically hear that the majority of people are out of work for 3-6 months, closer to 6 although the line of work and how you feel are trump cards. For me, expect a six month recovery with a tandem..which of course will be subject to change based on whether I complete a tandem and how my body responds to the above process. My energy levels should be shot for a while and since I will be rebuilding an immune system and will be extremely susceptible to the most innocuous of germs , I will be chillin' like a villain in my house for a long while, trying to limit my exposure to infections that would send me back to the hospital. I hope to return from the ashes just in time for the 2010 Michigan Football season and the Big House Big Heart Run I ran last year.

So was that helpful? MM experts....feel free to humble me with correction where I have mis-spoken. I am new to all of this... -Phil

And here's Cassie's edit to Phil's original post:
To keep it even simpler, I'd just say:
1. They give you drugs to make your marrow over-produce stem cells and push them into your blood.
2. They pull your blood-and-stem-cells out, collecting the stem cells and replacing the blood. (A simple and painless but time-consuming process.)
3. They give you high dose chemo to kill everything.
4. They give you back your stem cells, which will graft back into your marrow, creating a new immune system over the next few months.

It's not the Dex...this time

I was awaken at 3:03 AM with all guns a blazing ready to take on the world. I haven't done this since my Dex days and I want to say it feels good! I have sent a number of emails, posted a bunch of comments on Facebook and even got a blog post out of it!

I feel like I haven't updated folks lately on my whereabouts and that's probably because I still can't even recall what happened on Wednesday and Thursday. I am blaming the Ativan for inhibiting my recollection of those days events, rather than the Cytoxan. Although I am open to blaming chemo drugs for doing bad things :)

We are about a week away from stem collection and two weeks away from transplant. My neupogen shots kickoff today and I am excited to start producing a bunch of baby stem cells which hold my future.

I have been harboring some deeper emotions lately, mainly do to having to prepare and give a TEDx talk at the University of Michigan. They did a recording of my talk and they will present it at the event on April 10th, which actually coincides with the day I'll probably get my little stem cells back and also the big Relay for Life event on campus.

As for the emotions, I won't go into them in too much detail because I honestly haven't gone into them in too much detail myself. Given that I am so go-go, when I pause to consider being ejected from this world and leaving my son behind it just rips my heart to pieces. The thought of my little guy, who is now four, not recalling memories of me nor having the opportunity to play soccer together and go for runs is unbearable to think about. I find it a little healthy to ponder....

It's very easy to be inpatient with Ocean (and Iris who is 2 for that matter) and forget the joy that is available in the present moment with them. Our kids are truly amazing and I look forward to many more years with them.

So I started out talking about Dex and then finished with my kids. Sometimes I feel like my kids are on dex full-time! The End.

Here's a photo of Ocean looking "Dexy"

Updates from Infusion Room 5

Happy St. Patrick's Day! Or, as is the case here, Happy Blue Hair Day! Phil had some friends over last night and three of them dyed their hair to mark the commencement of mobilization. See the video at the bottom of this blog to see them in action!



Yesterday Phil got his Neostar Catheter placed. Beth has a picture of one on her blog, and Phil may want to show his off later on. We'll see. The cath will allow for easier stem cell collection, blood draws and chemo administration and this is also the site through which the stem cell transplant will happen. He said it's not too uncomfortable... and the creepiness factor is sort of over-ridden by the knowledge that he won't have to get poked so many times every week.

Today is Phil's Cytoxan infusion which is an all-day affair. We were under the impression, through no one's fault but ours, that the Cytoxan would be a simple infusion, we'd go home and life would proceed as normal until collection. However, it turns out he'll be on some heavy anti-nausea meds for a few days afterward and will likely be tired and somewhat out of commission until the weekend. His counts will also begin to drop at that point. We're at infusion right now and Phil received his Compazine, Ativan and Zofran to combat any nausea before it even begins. They just hung his Cytoxan, which will take two hours, and then we'll stay here for hydration well into the evening. Because of all the meds Phil is, in his words, "Soooooo tiiiiiiired." So he's cashed out while I pay bills, eat bagels and catch up on my Pottery Barn catalogs.

Tonight Phil will be sent home with a pump that is connected to his catheter. The pump will infuse fluids into his system throughout the night, and I'll have to wake him up every two hours to use the bathroom, since it's dangerous for Cytoxan to sit in your bladder. I got a tutorial on how to work and troubleshoot the pump since Phil will likely be too sleepy to notice if something goes wrong (which is unlikely). So between that and yesterday's class on how to flush his lines-- which we'll do three times a week-- and change his dressing-- which happens once a week-- I feel like a pro.

I'm heading home for lunch and to try and get the kids down for a nap in about an hour, then coming back to the hospital for the rest of the day. I asked the nurse if they could bring in another bed so I can take a nap too and she just kind of giggled. As if I was joking. Oh well. Thank goodness for free bagels and internet.

Updates to come as events warrant!

Myeloma Mondays #4: David from Chagrin Falls, OH

Where were you born and raised?

• Cleveland, Ohio

Where do you currently live?

• Chagrin Falls, Ohio

When were you diagnosed and how old were you?

• 2/14/94- age 34, non-secretory-

Did you know what MM was prior to diagnosis?

• no

Is there anyone else your in family with MM?

• not that I know of

What led to your diagnosis?

• Broken fifth cervical vertibra

How many time were you referred before actually being diagnosed?

• None

Where have you received treatment?

• University Hospital of Cleveland and the Burzynski Research Clinic

Explain your treatment history

• 3/95- five cycles of VAD
• 9/95- 2 cycles of cytoxan
• 12/95- pbsct
• 10/96- local radiation
• 9/97- second relapse-
• 11/97- began antineoplaston therapy
• 4/99- complete remission

Why did you or your doctor choose a specific treatment?

• VAD, cytoxan, pbsct was considered standard, aggressive therapy at the time-

What has been the side effects of the different treatments?

• extensive nerve damage, chemobrain, irritable bladder, GI problems-

What has been the hardest thing about your MM journey?

• cancer diagnosis originally, side effects- I am okay now.

What are the top lessons learned that you would want a newly diagnosed MM patient to know about?

• Life is all about priorities.

How have you been able to stay positive and encouraged in your MM journey?

• Creating the Galen Foundation, launching beating-myeloma.org has been a tremendous help to me.

After being diagnosed... What perspective was changed the most?

• My view of life has changed in that I have changed my priorities.

Did you or a parent work in a field with or were exposed to toxic chemicals prior to diagnosis?

• I worked in a commercial printing plant.

What MM sites or blogs had you found good information from after diagnosis?

• MMsupport, Margaret's Corner and beating-myeloma.org of course.

***To add your story to MM Mondays copy and paste this questionnaire (click here) and send it in an email to cancerkicker at gmail dot com. I would love to share your story! -Phil