The IRB approved my protocol. Now the protocol needs to be posted and printed and then Dr. Munshi will come over and consent me and then we can start.
The chemo is a 2-drug regimen. The first day I’ll get both (which is standard) and then apparently there’s some wiggle room for days 2 and 3.
The goal of this chemo is to move out all of my lymphocytes to make room for the re-engineered ones (CAR-T cells) which will proliferate.
They will watch my platelets (currently 12) and hematocrit (currently 23.4) and supplement with transfusions as needed.
I am about 90% sure we’ll start today, but it’s 10:30 and the clock is ticking…
I am so grateful for the love and support that continues to come my way. Thank you, thank you, thank you.
I am literally losing track of time. So rather than a detailed timeline I’m just going to explain where we’re at and why.
I am currently in a holding pattern in Boston waiting on an application for expanded access application from the FDA. On Friday the sponsor determined that my platelets did not meet the criteria for the clinical trial (required:50; mine:15). However, they did approve me for compassionate use pending the FDA/IRB approval.
The vast team at Dana Farber including my oncologist, Dr. Munshi, and Dr. Jacob Laubach, principal investigator on the trial have written a protocol for the use of the CAR-T cell therapies already engineered for me.
Timing: The application was sent late afternoon on Friday, now it’s the weekend, and Tuesday is MLK national holiday.
On Friday I received fluids, a unit of blood, and a unit of platelets. Today was an off day. Tomorrow I go for lab work and possibly more blood products. Sunday is also an off day.
Assuming I get approval from the FDA on Tuesday I will be admitted and get the lymphodepletion chemotherapy inpatient as there is concern that my low counts will go even lower.
I’ll update again as soon as I hear from the FDA.
Thanks for all the well wishes and checking in.
So, putting things in perspective I was officially diagnosed with multiple myeloma on May 5, 2014, rounding the corner to four years ago. (I only know this because I looked it up today.) I have been on maintenance therapy, post-stem cell transplant, for two and a quarter years (per Dr. Munshi, last week). I feel good. I am completely a symptomatic. My numbers look good.
And last week, Dr. Munshi told me I don’t have to go back to Dana Farber for SIX months – woot! No quarterly visits. Bonus!
Upon returning home from our week long vacation in the Hamptons I started to toy with the idea of starting to work from home earlier than I had originally anticipated. I am feeling better and better. The lingering symptoms are dry mouth, thirst and the biggest one, fatigue. The fatigue is somewhat difficult to track. I felt good on vacation, the trips down and back to the beach were completely manageable. Dining out every night was easy (ha!) as was strolling around town. I felt so good when I came home that on Monday I did what was close to my old full work out, the next day however, I was wiped out. So I am working on finding a balance. And although I am back to my regular 40 squats a day and take long walks without a problem, I wake up every morning with my legs feeling exhausted even though I have had a good night’s sleep.
We even went to a great wedding in NYC this past weekend. To prepare for it, I really took it easy the day before and the day of and I did fine. I danced and even stayed up until 11:00!
So. although I am heading up to bed these days at 8:00 p.m. I do feel ready to start back to work. At this point, I am only going to get fat and poor being home with no purpose. I have my first photography shoot this Friday (followed by one on Saturday and one on Sunday) and I will start working from home on Monday the 24th. In getting the doctor’s note required to start back to work I found out that I can return to working in the office on September 16th, which is earlier than I had thought (confusion on my part over which date we were counting from, transplant or discharge dates) and very good news. I miss my work peeps!
And of course, there is the hair update: it is growing. I’d have to say I am at the Sinead O’Connor stage. Here is a photo from the wedding prior to donning my wig.
As I have felt better I started to wear the wig more (for the longest time I was just wearing buffs or nothing) and I did go and have it trimmed (only I could spend money at a salon when I have no hair!) and it is much more manageable now. But I am also going out now with “no hair”, meaning no artificial hair (I also have a baseball hat with hair that Scot calls my Sandra Bullock). I am now trying to figure out when I have enough hair to dye it to hide the greys.
So, I am moving along now at a fairly quick pace. I have an appointment on September 3rd at Dana Farber where I hope to learn what sort of consolidation therapy and maintenance therapy they are planning for me.
Today I received some of my stem cells back (the rest are stored frozen for possible later use). It was pretty much a non-event. And I’d have to say that today I am pretty much a non-event myself!
I slept well last night with just one wake up for some nausea meds. But I was pretty nauseous upon waking for the day and ended up vomiting before anyone could get me anything, That said, they have added an additional anti-nausea medication to my arsenal, which is now up to 4, so it should be easier to manage going forward. The rest of the day, I slept, and slept.
I am officially the worst person to visit in the hospital. Lisa has taken to sending selfies of herself with her mask on giving herself different occupations!
I did just get on the stationary bike for 12 minutes, so I’m not a complete waste of space. I am still kickin’.
Ken used to use a fair amount of army vernacular, partially from the year he spent in Germany teaching on a military base, but I think mostly from his dad. Some of these terms have stuck with me and I still use them. So we come to “short”, typically I am not short, not in stature and I try not to be financially, but right now I am “short” in the military sense, or really in reverse of the military sense. Soldiers who are “short” are almost at the end of their tour of duty. I, on the other hand, am short and feel like I am going into the military, or perhaps prison.
And no, it is not that bad, nor that long, neither my hospital stay nor my limitations when I get discharged. But I am feeling like scrambling to do the last few things I can do now that I won’t be able to do later like eating now what I will have to avoid soon.
I am feeling much better than when I was feverish last weekend, but feeling the effects of last week’s chemotherapy – very tired and some occasional nausea. It took me three days to have both the energy and the appetite to go to Ashley’s for ice cream – oh the trials and tribulations! 🙂
I have just two more days of working (from home). One more photo shoot to edit. Dinner out with my kids. And I’m trying to use as many of our fresh herbs as I can when we cook!
At any rate, I’m counting down, but I’m still kickin’!