I got out of the hospital on Saturday and my mom was here to take care of me for the weekend and to give Allison a break. It was great to see my mah! A lot of you have asked questions about the plan for my treatment moving forward and, until Wednesday, I didn't have enough info provide a complete answer. On Wednesday, Allison, Mindy (our friend) and I met with Dr. Michael Lill, the head of bone marrow transplants at Cedars Sinai. He goes way back with my primary oncologist, who I adore, so it was no surprise when Dr. Lill and I hit it off. To date, I've been treated at UCLA, but my insurance isn't contracted with UCLA for bone marrow transplants, which is why I am headed to Cedars. Last week, I did a lot of negotiating with people who provided dmv clerk like service. I came very close to literally banging my head against the wall (but my platelets (stuff in your blood that prevents you from bleeding) were too low, so that would have been really dangerous). Weeding through bureaucratic mumbojumbo while hooked up to a bag of chemo is not fun. Whatever...we figured it out. I'll save my crusade for shaming health insurance until I have more energy and am cured.
So what’s next?
The path forward involves some more IGEV chemo and, eventually, an autologous stem cell transplant (SCT, aka bone marrow transplant, or BMT) (described in detail below). We are still talking outright cure here. What's up in the air is how many more cycles of IGEV chemo I will need prior to SCT. The results of my PET/CT scan on Thursday, June 25, 2015 will dictate the timeline and the number of additional cycles of chemo I need prior to transplant. My doctors want the disease to have the smallest possible footprint before transplant, which means that the PET scan needs to show that I am in complete remission (CR). Dr. Rosen at UCLA describes a PET scan as a geiger counter for cancer cells; PET scans show "hot" activity, i.e. active cancer cells. If the PET is clean, I'll move to transplant. If it isn't clean, I will need more IGEV chemo, and won't go to transplant until the drugs have achieved CR, or close to it.
I should have the scan results back on Friday, or Monday at the latest.
If the PET scan shows that I'm in complete remission
If my PET scan is clean and shows that I'm in CR, then the SCT process starts when I get out of the hospital on July 4th after my next IGEV chemo.
The doctors harvest stem cells when white blood counts are low because this is when the body creates new stem cells most productively. Chemo makes one's WBC count plummet, so we will harvest right after a cycle of chemo; this is referred to as "harvesting off of chemo".
During the week of July 6, 2015, the insurance authorization process would kick off and I would go to Cedars for a litany of tests to ensure that my body is strong enough to endure the SCT according to Cigna's criteria (my insurer). My doctors are certain that I'll pass this with flying colors. Allison and I will also meet with a number of the administrative and medical staff at Cedars to get a plan together for the events leading up to, during and after the SCT.
The following week, we would harvest my stem cells. The timeline is a bit in flux for the harvesting because it will all depend on my WBC levels. July 16-19, I would go to Cedars outpatient cancer center daily, where they'd give me high doses of Neupogen, a drug that stimulates white blood cell production and stem cell production. It could take 1 day or up to 4-5 days for my body to produce enough stem cells to harvest.
Likely, the actual harvesting would take place on July 20-24 (my 29th birthday), but could be earlier if my stem cells reproduce quickly enough. Here's a great article about stem cell transplants. For more information about what I am about to go through, feel free to check it out. Scroll down to the section called "How are the stem cells collected?" for more info about how the harvesting process works. To put it simply, I will go to the outpatient cancer center at Cedars daily, for approximately 5 hours each visit, and they will collect my stem cells. During this time, I'll have a catheter installed in a vein in my neck or my arm (TBD), with a two-way stream. Blood will come out one way, from which they'll harvest the stem cells and store them in liquid nitrogen until the transplant, and go back in once they've harvested. I will do this every day until they have enough stem cells and it will likely take 2-4 days to get the number of stem cells needed.
The following week, the transplant would commence. I'll be in the hospital for a total of 18-21 days, assuming I don't have any complications. Recovery will take a few months once I'm out of the hospital.
What the SCT Entails
I will receive high-dose chemo for five days (approximated 5 to 6 times more intense than the chemo I've received to date), which will kill all of my bone marrow. Once my white blood cell (WBC) count is zero, indicating that my bone marrow is all dead, they will re-introduce my own stem cells into my body of a course of approximately 10-14 days, until my WBC counts are high enough that it will be safe for me to go home. After the SCT, it will be a few months before I go back to normal (relatively).
If the 6/25/15 scan doesn't show CR
I will need more cycles of the IGEV chemo (I'm now 2 IGEV cycles deep) and once I've achieved CR, we will move to SCT. If, for some reason, IGEV doesn't get me to CR, then we will try a different type of chemo to get the disease to the minimum footprint possible before transplant, but let's not go there until we have to.
More treatment after transplant?
It is possible that I will need additional treatment after the SCT, but it's too early to know. Possible treatments include a promising new antibody treatment, called Brentuximab vedotin and/or possibly radiation.
So what does this really mean?
It's gonna be a long few months. The IGEV treatment is really unpleasant and I have a bunch of annoying side effects. The high-dose chemo will be brutal and it will probably make me nuts to be in the hospital for three weeks. I get caged-animal syndrome pretty quickly.
But, who cares. It's a cure. These next few months are going to suck physically, but I will continue to find peace and joy and have fun. All things considered, it ain't that bad.
Thanks for reading this. I know it's really long, complicated and probably confusing. As you can imagine, it's hard to explain verbally, so here it is for your reference.
Thank you all for your love, help and support. We can't thank you enough.