Back Home for a Bit

I was discharged last night from Smilow around 5:30. The day until then was fairly uneventful. Other than getting migraines in the morning, some nausea, and very unceremoniously puking up my lunch.

Today I had some logistics to take care of, rescheduling some appointments, booking my tooth extraction with an oral surgeon, etc.

It’s a bit easier to manage meds for pain and nausea at home because you can forego the call button and the wait for the nurse.

Another stint in the hospital has not helped my conditioning/muscle mass. I need to start talking walks no matter how short.

And one last thing, the hair loss countdown begins. We’ll see how it goes this time.

Update from NP 11 at Smilow

Things have been moving along. Basically without much drama or changes. A little migraine here, some nausea there, few episodes of lightheadedness. But feeling pretty good now and CERTAINLY ready to be discharged. The plan is to go home tomorrow (Tuesday) night when the 4th and final bag is transfused.

Scot’s brought me some of my favorites for dinner (Bar mashed potato and bacon pizza and then Archie Moore wings while we watched the Giants lose).

Erica visited and brought me some beautiful chocolate truffles (prescribed by Laura).

So to go home and prep for the stem cell transplant (SCT) and recover from this treatment. I haven’t even had time to read through the gigantic packet of info for the SCT.

And of course snuggle with my Lola!

More Moves, More Changes

Friday afternoon, a little before 5:00, Dr. Seropian decided to pause the chemo. Wait 12 hours and monitor the low heart rate. And then restart at a lower amount of the chemo they felt was causing the issue. I was not very happy about this. I really feel like I need all the “bang for the buck” I can get with these treatments.

More checking of vitals, more EKGs through the night. Around 2:00 am the hospitalist spoke to the oncologist on call and they decided to move me to a cardiology floor where they could monitor my heart rate with telemetry (remote real-time monitoring). So I was moved to the East Pavilion at 3:00 am. Nothing much changed overnight or this morning.

Today (Saturday) I was rounded on by medical staff who were lovely but were not decision makers and didn’t have any news. We were well beyond the proposed 12 hour delay in chemo administration. At 1:00 pm I called Seropian’s office and left a message for the clinician on call. 30 minutes later and many phone calls on her part she told me that the plan was to move back to Smilow 11th floor and restart the chemo with a reduction in the one drug.

So I moved back, this is room number 4 since Wednesday, for those keeping score.

And forward I go, again.

About Last Night

At 10:30 last night they told me they had a bed for me one floor down. I did not know I needed a bed on a different floor. Apparently I was on the medical oncology floor and was being moved to the hematology oncology floor. They moved me at midnight.

When the nurse in my new room did my vitals my heart rate was in the low 40’s. And no, it was not like that on the old floor, nor had I ever had a low heart rate.

What followed was a night of EKG’s the hospitalist, and calls with the pharmacy. A morning of doctor visits from the oncology cardiology, the cardiology team, and the oncology rounding team. Everyone was in agreement that since I was asymptomatic (no lightheadedness, dizziness, etc.) the treatment can continue – which is good news.

With very little sleep the days are definitely melding into one. I got here late Wednesday night, started treatment around 5:00 Thursday. And today is Friday (this is for me, not you 😎).

I finally slept for almost two hours this afternoon only to be awakened by a very cheery woman to go over my med list.

It’s all good.

None of You Have Ever Seen Me So “Zen”

Tuesday, the 7th was pre-stem cell dental visit (I have to have a tooth extracted next week) and a visit to Dana Farber for a couple of tests.

Yesterday, Wednesday the 8th, I had my PICC line inserted in my arm and then I went home to wait for my hospital admittance call. And wait I did. They finally called after 9 p.m. I was admitted at 9:30 (same gigantic corner room).

This morning, I waited for the visit by the rounding doctors. Everything was “a go”. I had an echocardiogram. I received some IV fluids because my calcium was elevated. And then finally, a little after 2 p.m., they started the pre-treatment hydration, followed by pre-meds for the chemo (dexamethasone and two different anti nausea meds). At 5:00, the first of four, 24-hour chemo bags was started.

And me, I didn’t get annoyed once. Friends and family called asking about progress. I would tell them none and say “where am I going?”.

It’s all good. It will get done. No stress here. I’ve heard it’s not good for your health 😎

A Whirlwind of a Week

On Monday, I went to Dana Farber with Alison, not knowing what to expect. We met with the APRN, Tiny. It turns out I had a good suggestion, I wondered aloud if I was eligible for a second stem cell transplant (SCT). And I am and it WAS a good idea. (My platelets, hemoglobin, and ANC are too low to get into any trials.) They collected enough cells in 2015 for a second transplant.

Wednesday evening I started getting emails and information about a stem cell transplant on October 2nd. On Thursday, I had an appointment with Dr. Munshi where I was consented for the treatment (required of any new treatment). And discussion of there to do the DCEP treatment first (same as last time in 2015). We landed on Smilow. I spent the rest of the day getting a few pre-treatment tests. I applied for short term disability at work. (again).

This is my schedule:

Tuesday, Sept. 7

8 am, Dentist appt required for SCT
9:30 am, COVID-19 test for admission
10:00 am, leave for DF with Kirsten, for required Pulmonary Function Test

Wednesday, Sept. 8

830 am, Watch Kensley get on the bus, first day of kindergarten
9:30 am, PICC line inserted
1:00 pm, complete skeletal survey
2:00 pm, neuromedicine oncology gated card blood pool scan (MUGA) – don’t ask, I really have no idea

I also am not clear exactly when I am getting admitted on Wednesday, nor when I will be discharged (they think Monday., Sept.13). It is a 96 hour continuous infusion.

I will lose my hair, which feels like a minor inconvenience at this point.

SCT should start on or about October 2. That is a whole other story. I have only just glanced through all the protocols.

In the meantime, I am incredibly tired. I sleep for 8-10 hours at night and then shortly afterwards can’t keep my eyes open and take a nap. I have terrible headaches that can be managed for the most part with tylenol, but as hour 5 passes it let’s me know I need more. That, along with some rib pain, leg weariness, occasionally being out of breath, I am certainly not myself.

A Long Day and an Additional Drug

Yesterday was a new record for me on a treatment day, 9.5 hours! I was there from 8:30 am to 6:00 pm. My nurse, Karen yesterday, started off by showing me all the questions she had before getting me started. She is a former military nurse and she is organized to the hilt! So I just settled in and started working (always have my laptop now, these treatment days are never short like they were back in the day when I would go in for one injection.) Being able to work does take away the stress and anxiety of needing to get out of there. I just needed some help with Lola, which Sarah, Kensley, and Piper kindly did.

One of the stumbling blocks to get moving was that Dana Farber told Smilow they wanted to add an additional drug to my 3-drug regimen, Kyprolis (carfilzomib). Smilow had already gotten authorization from my insurance but the Smilow pharmacy needed more information before giving it to me with my other drugs. Adding the 4th drug is, I am guessing this is the correct terminology, an off-label use for it. They were asking for a scientific paper or some such. So Alfredo (APRN at Smilow) and Tina (APRN at Dana Farber) were “penpals” all day. It was finally approved late in the afternoon, and was started as soon as my first (long) infusion was done.

This reminds me to tell anyone who has cancer to seek a provider/department that specializes in your type of cancer and ideally in an academic setting, even if you have to travel, and even if it is for consultations. Adding this 4th drug to the regimen I am on is standard at Dana Farber. It is basically unheard of at Smilow. Dana Farber has a Multiple Myeloma Department, Smilow has a Hematology Department. That said, oncology nurses are amazing everywhere. Having Alfredo Axtmeyer on my team at Smilow has made a world of difference. But even phlebotomists at Dana Farber are better. Just my two cents.

Back to me, I am having some symptoms, it is always difficult to tell if they are from the treatment or from the cancer. I am experiencing some bone pain (waxing and waning), lowering blood counts (ANC, hemoglobin, and platelets), fatigue, a little nausea, headaches, tiredness from benadryl on treatment days and then lack of sleep from dexamethasone after treatment days.

We take off for our Hampton Bays vacation tomorrow morning, but first I have to go in Smilow, for a blood check, possible neupogen shot, and possible blood products (maybe give me a little boost of a unit of blood before I leave). And then a Quest blood draw on Wednesday somewhere on the island, and an early morning move out on Saturday for an 8:00 treatment back at Smilow on Saturday. Good times! But it will be a good time in any case – can’t wait to be with family and get on that beach.

One last note: get vaccinated for COVID-19. If not for yourself, for the young children who cannot get vaccinated yet, and for me who did, but it wasn’t effective, and for people like me who are immunocompromised and at greater risk for severe cases of COVID-19.

Steps off soapbox.

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!)