On the health front...

I'm not going to lie...this week has been tough.  It's always difficult to come back from a wonderful vacation (I'll recap our fun spring break trip tomorrow), but we flew home last Sunday, and then I was back in my chemo room bright and early Monday morning.  Rough transition!  I started my second round with infusions on Monday and Tuesday, and have been feeling the effects since then, which is to be expected.  My sweet friend Bobbi went to chemo with me on Monday and kept me company (I figured Philip could use a day in the office after being on vacation for a week).  Philip joined me on Tuesday because we met with my doctor that morning to map out the next steps (more on that in a minute).  Fortunately, my chemo appointments are a bit more streamlined this round.  Last month, when I started these two new drugs (carfizolmib and pomalidomide), they started me a bit conservatively.  The carfizolmib is my infusion drug, and I take pomalidomide orally each night.  The infusion takes only thirty minutes, but they were adding pre/post hydration for two hours.  I would get a bag of fluids for one hour, then the infusion, followed by another hour of fluids.  While I wasn't crazy about having to be there for 3+ hours, I was very surprised and grateful that I tolerated the chemo so well.  The hydration is primarily used to help the kidneys, but it can also help with general tolerance.  When I started this new round on Monday, I found out that they removed the hydration and increased my dosage (because I didn't have any problems/side-effects last time), so I knew that this week may be a bit different.  The up side is that my appointments are fairly quick.  The downside is that, while I'm not feeling horrible, I'm certainly feeling like I'm getting chemo.  Tired, not a lot of energy, and maybe a wee-bit cranky.  But, I'm glad they bumped up my dosage--I want to blast those cells with everything we've got.

In the last month, we've been working on figuring out the next steps.  I made a doctor change that was  unexpected but gives me a lot of reassurance that I'm in the right place.  My original doctor was traveling during March, so she connected me to Dr. Libby, a multiple myeloma physician, in her absence.  We met with Dr. Libby as I started this chemo protocol in early March, and as soon as we were done with our meeting, I told Philip that I wanted to make a switch.  I had absolutely no problems with my first doctor--she's the one who diagnosed me  a year ago and has worked hard on my case.  But, I just liked the way Dr. Libby communicated with us, liked his approach, appreciated his directness.  I let him know my wish to make a change, and it was a seamless transition.  My original doctor called me to follow up--she's happy that I'm happy, and will stay "in the loop" as needed.  I was impressed and grateful that they made the process a comfortable one.

As far as my treatment plan goes, we've been looking at various options.  An allogeneic (donor) transplant is the obvious choice at this point, and the donor search continues.  But we've also been exploring CAR T-cell immunotherapy, which is a very new experimental therapy for myeloma.  It's been used primarily for leukemia and lymphoma up to this point, but there are a few studies for myeloma around the country (NIH, Dana Farber, and MD Anderson).  It's less invasive/risky than a transplant, and is showing promising results.  In a nutshell, they take out t-cells (a specific white cell), and they alter them in the lab (they make them "bionic").  They infuse them back into the patient, where they're trained to attack the cancer cells.  That's my very elementary understanding of the process, and probably not exactly how a physician would describe it.  But, you get the gist. My doctor has been doing some research as to how to get me into one of these studies, as this is something I'd like to try before heading to transplant.  We had a few programs narrowed down this week, and he was getting ready to "sell" my case to these programs.  I was ready to pack my bag and head to Bethesda, Boston, or Houston for a few weeks.  But then I got the good news/bad news call.  The good news--my Monday labs came back yesterday and my myeloma markers are completely normal.  No cancer in my blood.  That's good news.  That means the chemo is working, my body is still responding to it, and although my cancer is aggressive, we're still able to control it.  And that was just after one round of chemo.  The bad news--because I'm now in "remission", I don't qualify for the T-cell studies.  Patients have to be in active relapse, and I'm not.  And my doctor doesn't want to stop chemo at this point as they're worried that the cancer would take off.  So, while I'm disappointed at not being able to try this new therapy right now, I'm grateful that there's no decision to be made.  I firmly believe that things happen for a reason, and in this case, I'm meant to do the transplant.

So, we move forward, waiting for a donor match.  I'll continue this round of chemo, and will possibly start a new round in May if we're not close to doing the transplant.  They only want me off chemo meds 2-3 weeks before transplant, so I'll keep doing what I'm doing until they find a match and we get the transplant scheduled.  I got a call yesterday to schedule my transplant intake appointment (on the 27th), so they're getting the ball rolling.  I'll meet with a transplant doctor to discuss the process--a lot of it will be redundant as I've been through it already, but there will be a lot of new info as a donor transplant is a different animal than an auto transplant.  There will be lots of new information/procedures to digest.  I'm hoping that my donor will be finalized in the near future.  That's an integral part of the process, so fingers crossed that a viable, willing donor will be located.

We're comforted to know that this chemo is working, that these drugs are effective, and that my body is still responsive.  We are controlling the cancer.  That's huge.  I've always been a control freak.  I figure I've just been in training for this challenge.  Control buys us time.  And that's what we're after.