Switching It Up

After completing 4 rounds of Empliciti/thalodimide/dexamethasone it was clear that it was not working. Free lightchain progression below:

June 21: 5.79July 1: 45.81July 7: 53.44July 14: 56.03July 21: 108.58

Dana Farber switched my treatment plan to isatuximab(Sarclisa)/pomalyst/dexamethasone. Similar to other treatments I have been on (infusion and pills). I started the new treatment on Friday at Smilow. I did have a slight reaction (which is anticipated they start the does very slowly and move up the speed over time), it happened after the first bump up of time. I simply started coughing. They gave me more Benadryl (IV) and it resolved fairly quickly. I did have the company of both the nurse and the APRN for a full hour just watching me while I worked. The rest of the treatment went off without a hitch. It was a 7+ hour day (and a $20 parking fee!).

So, fingers crossed this treatment is more successful. There are some things they would add to this regimen if needed.

My calcium is also elevated, also known as hypercalemia (which is a symptom of the myeloma being active), Dana Farber gave me a liter of fluid and an Xgeva shot (strengthens your bones). There was not any change on Friday, so I received an additional liter of fluid on Friday. The most annoying side effect of hypercalcemia is constipation – enough said.

We head out to Hampton Bays on August 7. I was able to work out my treatment dates so I can stay for the full week, just have to leave at 6 am on get-away day.

Well, that was short

On April 8th my free light chain test results came back as undetectable. Which was awesome news. On May 6th they went up a tiny bit, but still not a trend, so not a worry. Since then, with every test they have increased. No bueno.

At the same time my ANC has remained very low (last week 0.3) unless I am giving myself neupogen shots.

The combination of the two things give my team at Dana Farber fewer options than they would like.

Tomorrow I will start a new treatment at Smilow: Empliciti/thalodimide/dexamethasone. It is a combination infusion/oral treatment, once a week for four weeks, and every other week going forward. I am not sure how long the process will take, I’ll learn more tomorrow. Off I’ll go, laptop in hand, working while I get treated.

The side effects are not supposed to be too onerous and mostly from the ups and downs of dexamethasone.

As always, I am grateful for my care teams at Dana Farber and Smilow and of course, the love and support from family, friends, and my work family at Yale Health.

Closer to Free (to steal a phrase)

Everything keeps moving in the right direction. The last time I needed a transfusion was March 19th. So when I went to Dana Farber two weeks ago on March 25th I had my central line removed! This was huge for my day-to-day. The three lumens on the line had to be flushed daily (by me, if I didn’t have an appointment at Smilow). I had to wrap it up to take a shower and never stand full on in the front in the shower. An inconvenience for sure.

With my hemoglobin and platelets continuing to rise it was just my ANC that was lagging and needing a boost from time to time (shots of filgrastim that I administer). The last time I needed a boost was March 29th and yesterday I asked Dana Farber if I could go to once a week blood draws instead of twice a week – and they agreed!

And most importantly my multiple myeloma numbers continue to go down. I go back to Dana Farber on April 22nd for another check in. When I went in March I had three questions all ending in -ine:

  • Central line ✓ (removed)
  • Vaccine ✓ (I can get it at 3 months, however they don’t know if I will develop an immune response or not)
  • Wine ✓ (in moderation)

And I am back to doing toe lifts and squats when I diffuse my hair. Full workouts coming soon. I feel better and better every day. (The new puppy is definitely contributing to my activity and fitness!)

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.

Cytopenia

It has been wonderful being home, after being away for a month and a total of 24 days in the hospital (24 days!!!).

I have had some very exciting news from Dana Farber. My free light chains (one of many myeloma markers) have completely normalized. My heavy lightchains have gone down by lalmost half and my M-Spike is also down by almost half.

Lisa, Erica, and Kirsten “watched” me this week while Scot worked. Next week (my last week that I am required to be watched) Erica and Sarah are on duty. Sarah will take me to my Dana Farber visit on Thursday (bone marrow biopsy, blood work, EKG, and 2 MRI’s because insurance is denying the PET scan again).

I’ve been feeling pretty well. My legs have been sore, I think from laying in a hospital bed for all that time. The only remaining bone pain seems to be my lower back. I had aggressive lesions at L1 and L5. I get tired and nap every afternoon.

When I am not at home being watched I am at Smilow (3 days a week) getting blood work and transfusions as needed. This is because of my lingering cytopenia. Here is some information about cytopenia from Healthline:

Cytopenia

Cytopenia occurs when one or more of your blood cell types is lower than it should be.

Your blood consists of three main parts. Red blood cells, also called erythrocytes, carry oxygen and nutrients around your body. White blood cells, or leukocytes, fight infection and battle unhealthy bacteria. Platelets are essential for clotting. If any of these elements are below typical levels, you may have cytopenia.

Types

Several types of cytopenia exist. Each type is determined by what part of your blood is low or decreased.

  • Anemia occurs when your red blood cells are low.
  • Leukopenia is a low level of white blood cells.
  • Thrombocytopenia is a deficiency of platelets.
  • Pancytopenia is a deficiency of all three parts of the blood.

The symptoms of cytopenia depend on which type of the condition you have. They can also depend on the underlying problem or condition that’s causing the low blood cell counts.

Symptoms

Symptoms of anemia include:

  • fatigue
  • weakness
  • shortness of breath
  • poor concentration
  • dizziness or feeling lightheaded
  • cold hands and feet

Symptoms of leukopenia include:

  • frequent infections
  • fever

Symptoms of thrombocytopenia include:

  • bleeding and bruising easily
  • difficulty with stopping bleeding
  • internal bleeding

My hemoglobin held from my transfusion at the hospital last Friday, until this Friday. My platelets did not fair as well. They were 24 last Sunday, 11 on Wednesday (I received a transfusion of platelets) and 10 on Friday (received more platelets). My ANC (absolute neutrophil count – what they follow for the leukopenia) has been ready at 200 even as I give myself Neupogen shots every day.

I did some research and found a study with this chart showing how long it takes CAR-T patients to recover from low blood counts.

The research nurse at Dana Farber threw out 2 months as a time frame. We’ll see.

What it means for my day-to-day is that I have to flush my trigger-lumen central line every day, give myself the shot of Neupogen and go to Smilow 3 days a week. If I need a transfusion the visit can be 4-6 hours.

Trying to be patient, but you know that’s not exactly my forte!

Let me also take an opportunity (again) to thank everyone who has reached out, sent food, babysat me, sent other gifts and treats. I am so blessed to be loved and cared for by so many. Everyone’s generosity has been mind blowing.

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).

Ground Hog Day

I’ve been in the hospital for 2 weeks today, and received my CAR-T cells one week ago.

Yesterday I asked the attending physician when he thought I could get out and when I could leave Boston for home. He said he would email Dr. Munshi for an answer

Today when they rounded on me he said, “No word on when I can go home.” A nurse mentioned that they wouldn’t let me go home if I was neutropenic (low neutrophil/white blood count) so I asked about that. And he said that would keep me in the hospital, that and side effects. So here we are. Ground Hog Day, again and again.