Tag: Boston

So Close

I was all packed up. Had all my outpatient meds. Six hour phosphorus infusion had just finished. Scot had crossed into Boston proper. The nurse just wanted to check my vitals one more time before they removed the PICC line. 100.8, surpassing their limit of 100.4.

Immediately back to blood cultures, IV antibiotics and at least 24 more hours here.

This has given me time to think about the pluses and minuses of being here.

On the plus side is the amazing nursing care. Many of the nurses have been doing transplants for several decades. Their knowledge and how it improves your care is immeasurable.

Also a plus, new and more anti nausea meds, and the staff’s commitment to keeping the nausea at bay.”If you even think you might be nauseous, ask for meds.”

And of course, the actual clinical care. I know Smilow does this largely out patient. I can’t see how. Here they are monitoring my input and output. Daily CBC, CMP, and electrolyte blood panels. On any given day I might be getting blood products and/or one or more of the following via IV: magnesium, potassium, phosphorous, or calcium.

There are just a few minuses (aside from missing home, family, friends, and of course Lola).

Imagine me having this sign at the foot of my bed for 16 days (it didn’t bother me at all).

My biggest complaint is the temperature control/air handling in the room. This is a constant pressure room, which means there is always air blowing out, keeping any germs from blowing in. There is air blowing right above my bed. The temperature of said air varies from freezing cold to steaming hot, at least a couple of times per hour.

Now there is a chance I get out today, but last night’s nurse was betting on Monday.

The Weekend

No, not that The Weekend, this Saturday or Sunday. Barring any unexpected changes I’m going home!!

My ANC went up to 0.66 and that’s the count I need to be above 0.5 two days in a row.

They “pulled” my central line this afternoon. I’ll have the PICC line in my arm removed when they confirm I’m going home. I had my nutritional and infection control training today.

I’m very excited. I avoided thinking about bring home until now. Boy, am I ready!

I want to shout out to my visitors: Alison, Marsha, Kirsten, Brett, and Lisa! And thanks to everyone for the texts, phone calls, FB messages, comments, basically – thanks for all of the love.

Now to go home and continue the recovery.

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 🙂