Inpatient

Sitting in the inpatient waiting area for my room to be cleaned. So close…

The FDA approved the expanded access request for me for the CAR-T cell therapy. The request still has to be approved by Dana Fatber’s IRB (Institutional Review Board) but that is being expedited. All of my orders need to rewritten and they are changing the dose of my chemotherapy because of the low platelets.

They anticipate starting the chemo tomorrow afternoon.

It’s been an interesting day because Alison and I had to check out of the hotel at 11 am. And COVID.

First we headed to the Blue Hills Trailside Museum (which is mostly like a small zoo), but it was closed.

From there we headed up the North Shore where we found delicious fish and chips and the Gloucester Fisherman’s Memorial.

Our last stop was Rockport, MA which is just lovely, hope to go back non-COVID (and feeling better).

All the while checking for email messages and finally calling the hospital and was told it would be ready around 5:00. Got up to the room around 6:30.

It was good to tool around in a car and see some sights (without exerting myself too much). This stay in the hospital could be anywhere from 10-14 days. No visitors allowed.

Is it time to change the name of this blog? I think it might be a jinx!

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.

Cruisin’ Along

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!

Consolidation and Maintenance

During my visit to Dana Farber yesterday Dr. Munshi determined what is next for me. I will start with 2 cycles of RVD (revlimid, velcade and dexamethasone) for my consolidation therapy. This is the same chemotherapy I started with back in January 2015. I will get velcade injections and dexamethasone twice a week, two weeks on and one week off, with revlimid (pill) every day for the two weeks on. For my maintenance therapy he is recommending velcade (injections every other week) and revlimid (I am not clear on how often, I know it is a lower dose). The maintenance therapy is ongoing, as long as it keeps working and I do not experience adverse side effects.

They ran blood work, including the serum electropheresis which shows my M-spike, a key multiple myeloma indicator, the results of which are not in yet. Smilow ran it a few weeks ago and it was down to 0.8, which is good, but not 0. Dr. Muhshi and Tina Flaherty (the APRN) said that the melphalan (the chemotherapy I had prior to the rescue stem cell transplant) keeps working for 6 months sometimes even longer, that and the consolidation therapy should help to push that number down further. They also told stories of patients who never get to 0 but hover under 1 for years and years.

So that’s where I stand and what I will be doing. I’m slowly remembering what the treatment was like for me last winter. Not terrible, not fabulous. Some sleepless nights, some tired days after sleepless nights, feeling a little bit off, constipation, some queasiness, some shakiness and then feeling normal again on the week off. And it’s only 2 cycles. I got this.

Lisa took me to Boston yesterday and we laughed and giggled our way through. When we were waiting in the exam room I was explaining and demonstrating how lunges were still hard for me, and it’s all about the balance and how I need to look ahead at something stationary. I was looking at her, so of course she proceeded to waive her arms and move all around. All this while Dr. Munshi and Tina happened to be walking by the room on their way to another patient. Apparently, we were a bit loud, they said “We’ll join the party in a minute.” They mentioned later it sounded like we had 10 people in the room – nope, just me and Lisa! It was actually a fun trip. And I wore the mask and gloves for the last time when we were in the clinic, which I whined about. Lisa got a big kick out of this, ‘After all you’ve been through without a complaint, this you’re whining about?” Everyone has their limits 🙂

Day +5

Day +5 was a good day, although it started with a rough night prior. I woke up around 4 am sopping wet, assuming I had just had a terrible night sweat. It was not until I realized it was more moisture than would evaporate on its own that I hit the call button. As it turns out my fluid line had gotten disconnected. And then, after changing the bed and falling back to sleep I woke up with a migraine an hour later.

BUT, I had a nice visit with Kyle, neither of us needed a nap and I did not need any “coverage” anti nausea meds (I am getting two of them without requesting over the course of the day). I feel more like myself with more energy. I do understand that it may get worse again before it gets better. But I am also open to the possibility that it will continue to get better, or stabilize with a few bumps. Either way, I’ll get what I get and I won’t get upset (that works for 53 year olds as well as it does for three year olds).

My WBC is down to 0.22, which is considered fairly close to bottoming out. My hematocrit was low enough that I did need and received a unit of red blood cells. The nurse made sure to inform me and Kyle that this was prime stuff, from one donor, screened and irradiated, so more “good stuff” for me!

Anxious for Sarah to arrive tomorrow for a four day stay and not just because she is going to do my laundry.

Thanks to all the people who have hosted or will host me and my visitors here in Boston: Alison’s Aunt Maureen and Uncle Joe, Lisa’s friend ‘Grini, Ken’s cousin Herman and Marsha, Sarah’s friend Suzanne, Kyle’s friend Jane, and perhaps even an old school chum of mine Ellen (if it works out).

And lastly, a Happy Father’s Day to all you dads out there – I was sad to miss all three celebrations I would have gone to today, but delighted that a good time was had by all.

Day +3

Not much to report today:

  • :I am more tired.
  • Nausea probably not as well managed today as yesterday, but no puking.
  • Kyle left this afternoon and Scot comes tomorrow morning.
  • I’ve lost 13 lbs.
  • I am a little worried about becoming deconditioned, as I am more and more fatigued and up to doing less and less. But I did get out  there and walk a bit this evening and got on the bike yesterday evening.
  • WBC (white blood count) down to 0.41, platelets and RBC lowered slightly but no need for any transfusions.

The photo is of the beautiful silk arrangement Jane brought me yesterday.

Day +2

Day +2 was marked by the changing of the guard, Lisa finished her 3 day tour of duty and left last night while Kyle was driving up. I’ll miss Lisa’s ever present smile and silliness. I was surprised when two of Kyle’s best “girl” friends, Jane and Toni, arrived with Kyle early this morning. It was great to see them both and Jane brought me a beautiful floral arrangement, she is a nurse and knew that it could not be live flowers. It was wonderful to have their energy in the room.

I worked hard and broke my streak, no puking! Nibbled some crackers when needed. The day is not over but getting through the morning was key.

The mighty melphalan is doing it’s thing, my white blood count dropped to 0.64. Which means two things, I can’t go to the shower in the hallway any more and I am more fatigued. It’s a weird feeling to be laying in bed and feel like lifting your phone up to look at it is an effort. But, generally speaking I feel pretty good. And I suppose a third thing – kicking the multiple myeloma’s butt!

And it was nice to have a napping partner this afternoon, we took a good 2 hours snooze after watching some Game of Thrones. To his credit, when he heard me move he jumped awake and said “Are you o,k,?” – he’ll make a good dad some day 🙂

Day 0

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’.

Going In

I leave for Boston in a few hours, my room is already there for me. No waiting, you know, except for all the rest of the waiting 🙂

So I’m going in, not quite as dramatic as jumping off of the Victoria Falls Bridge (see photo above of me, Summer 2012).

I’m ready. I’ve eaten my way through the past few days, all things I won’t be able to have for the next 50 days (or more) and things I think I might miss (or just felt like having).  This has included:

  • 2 lbs of fresh raspberries
  • McDonald’s cheeseburger and fries
  • Fresh figs
  • Blueberries
  • Doughnuts
  • Salads, lots of salads, middle eastern salads, shaved brussel sprouts over a risotto cake, arugula and beets, etc.
  • Dr. Mike’s hot fudge sundae

My clothes and entertainment items are packed in plastic bags (requirement). No toiletries, jewelry or wallets allowed.

And I won’t be outside for 18 days. Weird.

Here’s hoping I’m bored. As Dr. Munshi said when he first talked to me about this process, “I like my patients bored, that means they are feeling well.”

Cups, Liters, Hours and Millions

The first day of the stem cell harvest started with the placement of the Hickman line under conscious sedation. Not too bad, I felt like I was aware of almost the whole thing and it felt like it took about 10 minutes, but it took an hour, so clearly some of the anesthesia “did it’s thing”.  

After a few minutes in recovery I walked to the Kraft Blood Donor Center, which is a funky little area of Brigham & Women’s Hospital. It is small and filled with New England Patriots memorabilia including  a wall papered with a shot of Gillette stadium. The space made my Boston-raised friend Alison very happy. It had a more relaxed atmosphere. the clinical receptionist making corny jokes and the nurses very cordial and occasionally very chatty. 

The process of apheresis is completely pain free. They simply hook you up to a machine from the two pronged central line, blood going out from one and coming back in the other. 

  
I asked how long the day’s process would take and was told it depends on your blood volume. They want to process your entire blood volume through the machine. Your blood volume is calculated based on height, weight and sex. Mine is calculated as 5 liters. Which takes about 5-7 hours. 

As I was laying there attached to the machine I asked how much of my blood was outside my body at any one time. The answer: about a cup and a half. 

  
At the end of the day the machine returns all of your blood remaining in it back to you. It’s all a little strange and a tiny bit gruesome, but not if you don’t think about it!

They weren’t able to complete my blood volume because we got a late start (Hickman line placement) and stopped at 4:00 after about five hours. They were encouraged about what they would collect based on my morning blood work showing a lot of stem cells floating around. And at 8:00 pm I got the call that they had collected 5.8 million of the 8 million stem cells they need. 

So we’ll get an early start today and hopefully be home Wednesday morning. 

The last two hours of the day yesterday consisted of lengthy discussions of food, restaurants and transit optiobs with the nurses. They were very excited to help us plan. Alison was pretty sure they wanted to come with us! 

So after finishing up In the blood center we walked to Brigham Circle, took the T and walked through Boston’s Public Garden. We had a lovely dinner at Toscano in Beacon Hill. It was good to walk after a day of laying around. And it was good to eat out as I countdown the last few days until my confinement.