Update on What’s Flowing Through My Veins

I have been going to Smilow every Monday, Wednesday, and Friday since I came home from Boston on February 12th. I started off needing blood (low hemoglobin) and platelet transfusions almost every single time and have always needed something and often both.

In the last week and a half or so things have been looking up:

  • March 5th: only blood
  • March 8: only platelets
  • March 10: only blood
  • March 12: only platelets
  • March 15: NOTHING!
  • March 17: NOTHING!

So, today Alfredo at Smilow and Liz at Dana Farber decided that I only need to get my blood checked two days a week. I will go in every Tuesday (because I need my central line bandage changed weekly) and I will get my blood tested locally on Thursday and only go in on Friday if I need anything!

There is light at the end of the tunnel!

My ANC with the assistance of the Neupogen shots had gotten all the way up to 2.8! So they took me off of the injections. But, Monday it was 0.8 (which means I am at high risk for contracting infections) and today it was 0.7. Alfredo and Liz decided that I wold give myself the Neupogen injections on days that my count falls below 1.0 (and that should hold “for a bit”).

The next goal: my platelets and hemoglobin continue to improve so I can have the central line removed!

30-Day Follow-Up at Dana Farber

Last week, on Thursday (Feb. 25) Sarah and I left East Haven bright and early for a series of tests and appointments at Dana Farber.

First stop was blood work and then off to my bone marrow biopsy under conscious sedation. Multiple bone marrow biopsies over a few months made me decide to forego being brave and just laying there crying on the table in pain, it’s conscious sedation for me! Because I had the conscious sedation Sarah was allowed to accompany the entire day rather than sitting in her car (COVID rules).

We then were scheduled to meet with Tina Flaherty (the APRN who works with Dr. Munshi) and also Liz, the research nurse (she has been my go to person – she gets shit done!). When we were roomed, suddenly it was myself, Sarah, Liz, Tina, Dr. Munshi and another oncologist (studying with Dr. Munshi to learn about CAR-T, I am not sure if “studying” is the correct term, but it describes the relationship). It was a very full exam room for a few minutes! Tina just wanted to say Hi! because Dr. Munshi had her switch patients so he could see me. The appointment went well, everything was positive, myeloma numbers are all going in the right direction, they are very happy with my progress. The cytopenia will resolve (eventually). Dr. Munshi noted that I looked good and wanted to know if I felt better – which I do.

At the end of the visit Sarah was wise enough to ask about when I could drive (per the protocol I had another month to go). Dr. Munshi said, “That’s silly, you can drive.” Yay!

We ate some lunch and then it was off to the dreaded MRI, which I had been told would be 2 hours. Tina approved 1 mg of Ativan (even though I had had the conscious sedation). When they brought me back, the tech said “So, you’re here for the marathon.” And I said, “Ugh, 2 hours.” He replied, “Not 2 hours! An hour and 15 or 20.” Such a relief. It was still not that “easy”. After 30 minutes I had to ask to remove the mask (COVID). And I needed to ask them towards the end to take the blanket off. But, it’s done!

Sarah and I were getting into the car to leave at around 6 pm and I remembered that the nurse practitioner who did my bone marrow biopsy has said that if it bleeds more than the size of a quarter we should turn around and come right back (she assumed we were leaving at that moment). I had Sarah look at it, and I actually don’t recall her precise words, it was more how she said it. But, suffice it to say, it was bleeding, a lot.

We went straight back into the building from the garage and up to the myeloma floor, explained the situation, and they paged Dr. Munshi and told us to wait in the waiting area. I didn’t think I should sit down, and reached back and put my hand on the outside of my jeans and my hand came back covered in blood. So, no, we were not going to sit down. Shortly after that they called the charge nurse and I was pretty quickly taken back to the infusion area.

I was indeed bleeding profusely (the clinical term). Again, the order and details are a little foggy, but the nurse had Sarah at one point hold something over the area while she got another nurse to help her remove the existing bandage and put a new one on – it needed 4 hands. I did get weak in the knees (I was still standing), broke out into a cold sweat, and got nauseous, but just for a few minutes, sitting down and some water resolved that.

Dr. Munshi came into the room and said, “You don’t look so good now.” Thanks, Dr. Munshi! They ordered a bag of platelets, and when that didn’t work (still bleeding profusely) they ordered another bag. If that hadn’t worked I was going to be heading to the Emergency Department – but it worked! And we were heading home!

I am starting to see some signs of life with my blood counts. On Monday I did not need a blood transfusion (but did Wednesday and today, Friday). I have needed platelets each visit, but my numbers are in the teens instead of the single digits (FYI – the standard range for platelets is 140-440). And in big news, my ANC hit 0.4 for the first time since the CAR-T therapy!! (You might recall that they wanted them at 0.5 to discharge me from the hospital, the standard range starts at 1.0.) I am very excited – light at the end of the tunnel, perhaps?

In orthopedic news, my lower legs have been very tight ever since I got home from the hospital (apparently 24 days in a room is not good for you in that way). I have been taking walks when the weather allows. On one of these walks I felt a stabbing pain in the middle of my calf. I was somewhat sure it was my achilles, but after a visit with Dr. Tomak (my orthopedic surgeon) it is just a pulled/strained calf muscle. Just requires, heat, rest, and massage to heal. It’s already feeling better.

Other than my legs being very stiff, my biggest physical complaint is back pain, and with good reason. The MRI revealed compression fractures at T7 and L3. Taking a wait and see approach for now. Liz said that if one is asymptomatic they don’t do anything, otherwise there is a minimally invasive procedure called a balloon kyphoplasty. The MRI showed other bone lesions from the myeloma, but those should heal in time.

I’m Coming Home

I’m wearing jeans, socks and shoes – street clothes – yay!! Pick up time is 3:00, if things work out a rad earlier with the hospital and Scot’s arrival here (still no one can come in) I might bust out a little earlier.

I’ll be self-administering Grannix injections and flushing my 3 lines daily. Plus some Smilow visits for transfusions.

Fortunately, they are letting me go home and not to a hotel here in Boston. I will need caregivers on days that Scot is at work. Thankfully, Lisa and Erica are able to be with me (with a few back ups just in case). Then, Lisa and I will return to Boston for my first follow up tests on the 25th. (And maybe line removal??)

Crazy cat photo credit: Hope Conway

yyyyyyyyyy

The photo above is “y” I haven’t updated the blog, I apologize for the lapse.

Since I arrived here at Brigham and Women’s (Dana Farber’s inpatient hospital) I have been asked what every nurse and doctor calls “those silly questions”:

Where are you? Brigham and Women’s
Which city? Boston
Some version of what’s the date? February 2021 (at least)
Can you name 3 simple objects in the room they point to? Flashlight, refrigerator, pen
Can you count backward by 10’s from 100 to 0? 100, 90, 80, 70, 60, 50, 40, 30, 20, 10, 0.
Some doctors ask can you name the days of the week backwards starting with today? Tuesday, Monday, Sunday, Saturday, Friday, Thursday, Wednesday

And the last one is to write a simple sentence. Seems weird but for the most part thinking of what to write was the hardest part. In one midnight testing I wrote: “The rain in Spain stays mainly on the plain.” I laid back down and couldn’t even remember where that came from, then of course, My Fair Lady, Eliza Doolittle – random!

But on Thursday (day +9) I did get a fever and they could see the indicators in my blood that there were a lot of cells were dying. I was finally getting the response to the CAR-T cells I had been hoping for. Both Friday and Saturday were rough days. Below are sentences from Saturday.

Easy to note the loss of neuro capability.

For several days I was in and out, coming and going with the fevers. I totally “lost” at lease one day, maybe two. Examples of what it was like:

  • I could not figure out how to make a call with my iPhone
  • And I wanted it on speaker, also a no go
  • If you did get a call from me there was a day I could only get about 3 words out
  • Texting was very difficult, and I chose not to for several days, that took the longest to come back
  • Exhaustion
  • Difficulty getting out of bed
  • No appetite
  • Napping most of the day

It was just yesterday morning that I quickly sat up on the side of the bed and felt almost totally like myself.

This was all part of the CRS (cytokine release syndrome). CRS is also seen in COVID patients.

I also had TLS (tumor lysis syndrome), this was less something that I felt, but was carefully controlled by the team here. TLS can damage your organs, including the kidneys, heart, and liver.

The really good news, as they kept telling me, was as badly I was feeling my myeloma was getting it worse. They were very impressed by the response, saying they hadn’t seen such a great response. It will be several weeks before I come back for scans, etc.

And yes, I said “come back” – it looks like I will really be going home on Thursday. Today they finally stopped the extra fluid, and other meds, and as of tonight my numbers look great on their own.

I will update if that changes, and plan to update more as I can now.

I hope you can laugh along with me at my neuro toxicity “writings”. When I first laid eyes on it I laughed and laughed.

There must be some others in a trash bin somewhere, perhaps I’ll ask if they save them as part of my record.

Again, this team here both nursing, rounding PAs, PCAs, and the amazing brains on the CAR-T team (including my Mr. Munshi, but many others).

Finally Moving to the Next Step

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.

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.

Limping to the Goal Line

O.k., perhaps that is a little over dramatic. However, these last few weeks have not been great. Mostly manifesting itself in my blood counts being too high or too low, depending.

Calcium too high (headaches, and possible confusion), solution = zometa and fluids. Possible cause, myeloma attacking my bones causing calcium to leach into my blood stream.

Low hemoglobin, aka anemia. I am apparently sensitive to anemia, throughout Christmas and afterwards the slightest activity (moving things in the refrigerator, washing my face in the shower, etc.) caused me to be terribly out of breath, solution = blood transfusion. Causes are either from the treatment I’ve been getting (but am done now until right before I go inpatient at Dana Farber/Brigham and Women’s Hospital) or from the multiple myeloma.

Very low platelets.

Low ANC, again very low, causes me to be immunosuppressed. They have been giving me Neupogen shots and this week added an antibiotic to be on the safe side.

Bone pain, this is definitely the myeloma. I am most comfortable standing or sitting up very straight in a chair, which makes resting a bit difficult. I did finally ask for something for the pain and they prescribed oxycodone (5 mg, take one or two every 6 hours). I feel like they hardly work, therefore I haven only tried them a couple of times. For now I am sticking with Tylenol.

Some nausea (helped by anti-nausea meds), and some serious fatigue (short cat naps help). I actually took some hours off of work a week ago, I simply passed out on the couch in the morning and then again in the afternoon. This is the first time throughout this entire illness (starting in 2014) that I have needed some hours off of work.

I am also trying to plan and get my act together for being away from home for 4 weeks (at least). I booked the hotels (the pharmaceutical sponsor is paying – yay!). Started planning some food/eats with Alison and Lisa. Thinking about packing clothes and everything else I will need. Continuing the count down – as of this evening I have 6 more work days and 2 weekend days to be fully prepared.

I’ve also put together my calendar:

Now, that most of the planning is done, it’s just thinking about the unknown of what the medical procedure will be like.

Line In, Cell Collection, Line Out

If only things were so simple as the title of this post. But, dear reader, never fear – all is well.

I drove to Boston at 5:00 am on Monday morning, December 7th. I valet parked my car and left my suitcase with the front desk. And then I walked the mile to Dana Farber.

Then I walked the maze that is the Dana Fraber/Brigham & Women’s complex, all inside in overhead walkways. They schedule you to arrive at 9 am for a 10:30 procedure. Tending toward the prompt side, I had a long wait in the waiting room.

When I got down to the pre/post op area the nurse started running through her questions. She noted that I had told them I would Uber back to the hotel. She then asked me who would be staying with me? “No one.” “You are having conscious sedation, you need someone with you for 12 hours.” Of course, this would have been good to know when I had the lengthy pre-op discussion on Thursday night!! Oy. They landed on giving me less sedation. And they did, and I was fine.

The next day I arrived at the Kraft Family Dlood Donor Center where they do the apheresis. Yes, that Kraft, the whole place is strewn with Patriots memorabilia! I had a visit from one of the research nurses, she told me I might want to stay over night because some people get tired from the aphaeresis. Do these people not know that I am a planner and need all of this information up front?!?! Anyway, a mere five and a half hours later and the apheresis was complete. I loved my nurse who sat with me for most of those hours. I asked a lot of questions, he was very informative and had good advice. He also had a lot to say about the ways politics and medicine come to play. He kept pointing doing the street and referencing “Cambridge”.

Then I headed back to have the line removed, which was inconsequential, other than the slight discomfort of laying down flat on your back with your head below your heart for 30 minutes.

Next up was a special bonus visit, back up to the multiple myeloma clinic for an Xgeva shot because my calcium was elevated (12.9). And then the drive home, which did not include any traffic even though I left a little after 4 pm. I always like to point out whatever little upside there is to this pandemic – no outbound traffic on a Monday night in Boston!

Wednesday morning I started my bridging therapy at Smilow. And because my hemoglobin was low (7.9) I needed to get a blood transfusion.

I felt pretty terrible on Thursday and Friday, probably the worst I have felt since the stem cell transplant. Very out of breath and oh so tired. Saturday I went into Smilow as scheduled for a neupogen (zarzio) injection to make sure my white blood count doesn’t go too low. Now, get your score cards out: my hemoglobin was down to 7.7, and on the bright side my calcium was almost normal at 10.3. So, another blood transfusion. Four and a half hours there.

Calendar updates

Bridging therapy: December 9 (done), December 16 and 23 (all Smilow)
Arrive in Boston: for the next phase of the overall CAR-T Cel therapy: January 13

I will stay in Boston from that date until 21 days after I receive the cells back (Day 0)(approximately January 20). However, they have warned that these dates are NOT set in stone and even mentioned that Dr. Munshi might want me to stay in Boston until 28 days after Day 0.

Cutting Edge

“Cutting edge”, it sounds so hip, so cool, so in the know. And on the cutting edge is where I now find myself.

My current treatment of Krypolis (carfilzomib), Cytoxan (cyclophosphamide), and dexamethasone has stalled, a small uptick, an inch downward, but staying right about where it has been. To the layperson (aka me) this doesn’t seem so bad, especially considering where the numbers were. But to an oncologist, this is a failure of the treatment and a need to move on to something else.

I met with Dr. Seropian on November 11th, a little more than a week before I was already scheduled to see Dr. Munshi at Dana Farber. Seropian mentioned some clinical trials at Smilow, I wrote them down to take to Munshi. I told him I knew that Dana Farber had put me on a list for a CAR-T cell therapy trials at Dana Farber.

And then that Friday night (November 13), at almost 6 p.m., I got a call from a Dana Farber (DF) research nurse. There was an opening in a CAR-T cell clinical trial for December 8th. They had reviewed all the candidates and I was the perfect one (apparently the right combination of enough cancer, and enough health). She gave me a quick rundown and I agreed to participate. I was hoping that this would be coming up soon, so I wasn’t that surprised. December 8th sounded sort of far away, but it really isn’t.

The DF research team managed to schedule all of my screening appointments for Monday, the 23rd:

  • Vein check (to see if I need a port/line for the leukapheresis
  • “Consenting” with Dr. Munshi
  • “Teaching” with the research nurse
  • Pulmonary function test
  • Transthoracic echocardiogram
  • Bloodwork
  • Electrocardiogram
  • And then back home that night.

    It sounds like I might get a 2 week chemotherapy break between now and December 8th.

    After December 8th things are a bit up in the air, this is what I know:

    • I will receive some sort of bridge therapy after the 8th and before I am admitted.
    • It takes 4-6 weeks for them to modify my blood cells.
    • About 2 weeks before they are ready to start the process of returning them to me I go back to DF for more tests including a bone marrow biopsy (boo!)
    • 5 days before they return the cells I will get 3 days in a row of lymphodepleting chemotherapy (fludarabine and cyclophosphamide), the first 2 days are 8 hour days, and the third is a 4 hour day). This is followed by one day off, the following day I am admitted, and the next day I get the cells, Day 0.
    • From Day 0 I will have a minimum hospital stay of 7 days, depending upon the severity of the side effects.
    • For 21 days from Day 0 I need to be within one hour of Dana Farber.
    • For 30 days from Day 0 I need to have a caregiver with me 24/7.

    When I ask the nurse how I will feel after this part or that part (I never ask about the week in the hospital, I should do that) she always says it’s not that bad, I can drive myself, etc.

    Speaking of driving myself, this pandemic and no visitors and quarantining, etc. is really throwing a wrench into my planning. No visitors at all at DF for outpatient visits. One visitor for inpatient. But with travel restrictions it is complicated.

    The possible risks/side effects of the treatment sound pretty horrific, but they have found that myeloma patients are faring better than the lymphoma patients (CAR-T is already approved for lymphoma). In the studies (there are multiple companies vying coproduce this therapy for myeloma), myeloma patients have not reached the highest degree/level (3) of side effects. That said they are: cytokine-release syndrome (CRS), neurological events and brain swelling, and tumor lysis syndrome (TLS). So fingers crossed!