Back in the Mix

I started my maintenance therapy on January 26, so I am two weeks in. So far, so good. I feel good. I even started doing a few minutes of yoga every morning!

I was wrong (in my previous post); I have been on these three drugs before, in this combination, back in 2020 when I first relapsed. I had two rounds, it worked in the beginning but then the myleoma numbers started rising again.

This regimen does also include dexamethasone, but just on treatment day. Both my sister and my husband can attest to my chattiness and hyperness on these days.

On Friday I had my port catheter placed (see photo). It was done under conscious sedation. All went well, I was pretty tired and sore Friday night but getting better every day, if a little bruised.

That’s all I have to report, all numbers still look good. We are in (hopefully) a long period of no news is good news!

New Menu

I went to Dana Farber today with Lisa. I saw Tina (APRN) and Dr. Munshi and they have a maintenance therapy plan for me. I am not sure why it was so confusing, but I had to listen to the recording I took of the appointment about 5 or 6 times, taking notes to understand what the plan is. And I am still not certain I have it right. It’s always a little bit complicated because drugs have chemical names and brand names and they are often used interchangeably in the same sentence. And Dr. Munshi talks fast, and everyone was wearing masks and Dr. Munshi (and Lisa) were double-masked.

This is what I think is happening starting next week (Jan. 20) or the week after (Jan. 27) depending upon how fast appointments and insurance approval can happen.

Month 1:

Kyprolis/carfilzomib (infusion), every week, 3 weeks on, one week off
Darzalex/daratumumab (injection), weekly
Pomalyst/pomalidomide (pill), every day, I think 3 weeks on and one week off, they didn’t mention this but that is how it is typically prescribed

Month 2:

Kyprolis/carfilzomib (infusion), every week, 3 weeks on, one week off
Darzalex/daratumumab (injection), everynother week
Pomalyst/pomalidomide (pill), every day, 3 weeks on and one week off

Month 3 and going forward

Kyprolis/carfilzomib (infusion), every other week
Darzalex/daratumumab (injection), once a month
Pomalyst/pomalidomide (pill), every day, 3 weeks on and one week off

I have been on all three of these drugs previously, but not together in this combination.

I may also need dexamethasone (steroid) with the Kyprolis for the first few infusions to avoid a reaction. Kyprolis is the infusion that burned my veins. I am considering getting a port. I am told that patients often put off getting a port, but when they get one they wish they had done it sooner.

In other news, I tested positive for COVID-19 on December 23rd. I had mild symptoms and I was able to get sotrovimab, a monoclonal antibody, from Dana Farber on December 27th. Scot tested positive 6 days later, also with mild symptoms. The good news is that I likely have some immunity now.

Currently, I am feeling really good. My energy and strength are back and I have no lingering symptoms of myeloma nor COVID-19. It has been lovely feeling good and not being on any treatment medications, but it also gives me some anxiety, my cancer being left to its own devices. So back I go to my friends, the lovely oncology nurses at Smilow!

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.

End in Sight

Here at Day +9 (real day 13 in the hospital) my white blood count (WBC) numbers have bottomed out and are rising! They went from 0.01 -> 0.03 -> 0.11!

To go home they need to be at 0.5 for two days in a row.

Day +1 and +2

Well, I went two for two yesterday and today – puking in the morning. Thankfully, the team added yet another anti nausea medication and it seems to be working.

Today I had another visit from Alison on her way home from visiting her parents. I stayed awake all day (yesterday I slept a lot). I ate a decent lunch and dinner. However, I only walked a bit and danced once. I’ll have to try harder tomorrow.

Brand New Stem Cells

Not exactly new, they’ve been on ice since June 2015. But they are new to my very beaten up bone marrow. I received them today at 2:15. The nurses wish you/them a happy birthday.

It went exactly as planned. A little scratchy throat and flushing (from the preservative), but nothing a few life savers couldn’t help.

I was a bit nauseous early this morning but the meds did their trick and no puking so far.

So this is Day 0. The “anticipated” discharge day is Day 24 (October 26). But it could be a couple of days sooner or later. I have some rougher days ahead but nothing I can’t handle.

Thanks for the comments, texts, and checking in 🥰

Ice and Popsicles

Friday, October 8: Central line placed at Interventional Radiology, they left the PICC line I have in my arm in because there was no order to remove it. We had a lovely early anniversary at Aquitaine in the South End.

Saturday, October 9: Had a yummy brunch with a spectacular cinnamon roll at Alden & Harlow at Harvard Square. Checked into my room at Brigham & Women’s Hospital around noon. Slight mishap, the bag I packed for the hospital didn’t make it into the car.

Sunday, October 10 (Day -2): Chemo Day! Only slept from 12 – 3:30 am. Started running fluids at 10:30 and premeds: some antibiotics, aprepitant (long acting anti nausea), and 10 mg of dexamethasone (which I will get 4 days in a row).

Alison brought my bag to me and arrived in time to watch me eat ice and popsicles for 1 1/2 hours. This is cryotherapy to prevent mouth sores which is a common side effect of the melphalan, the chemo drug. She stayed for some hospital lunch and we finished the Sunday NYT crossword puzzle.

They recommend 30 minutes of exercise per day. I have been doing sets of 10 minute dance sessions in my room. I got 4 sets in even with getting the chemo. Hopefully I can keep it up!

One more thing, they have decided to leave the PICC line in my arm in. So they will have 5 access points if needed.

Numbers and Perspective

When I went to Smilow yesterday to get my CBC and CMP checked, which I have been doing every other day without fail, I was pleasantly surprised. Well, actually I was ecstatic, which is where the perspective comes in. My platelets were 20 which is just at the break point for needing (or not needing) platelets (low normal for platelets is 140). But I was excited because lately my platelets have been around 8-14. So 20 seemed great – and no I did not want any platelets, thank you very much.

My hemoglobin came in at a whopping 8.6 so I also did not need a blood transfusion (low normal for hemoglobin is 12). My ANC which not that long ago was hanging down around 0.1 and 0.0 (!) was 0.6!! I was so excited I made the nurse a little nervous. She was sure to remind me that I was still neutropenic and to follow all the protocols. (I need to get to 1.0 not to be neutropenic, that is also low normal).

Speaking of platelets, earlier this week I had my first platelet incident. Let me preface this by saying if anyone should not have low platelets, it is I, with my propensity to banging into things and general klutziness (I know, former college athlete, whatever, I’ve also always been a klutz!). Back to my story, I was walking out of my kitchen and banged my knuckle on a door jamb. I thought to myself, well, with my low platelets that’s going to leave a bruise. Probably 30 minutes later I noticed that I couldn’t bend that finger, I looked down and it was blowing up like a balloon! I totally panicked – call the doctor? go to the ED? Thankfully, Scot came home early and just at that moment, he calmly said, “Don’t panic, put some ice on it.” (He later admitted to actually panicking.) I iced it and called Smilow, and amazingly got through in just a few minutes. I got a follow-up text from my APRN Alfredo, asking for a photo, which I sent. And by then it had stopped inflating. He told me to keep icing it and elevating it. Which I did and it was fine. It did turn many different shades of purple over the following days.

Already less swollen out of the ice

One day later

Two days later

Now I am just a couple of days away from starting my Stem Cell Transplant Part 2. I leave on Friday fro the central line placement, then hospital admittance on Saturday, chemotherapy Sunday and Monday, and then on Tuesday I get my stem cells back. Tuesday is Day 0, I should be ready to come home on Day 12 to Day 14.

Not just yet…

I did make it home last Friday and the root canal is complete. However, my team at Dana Farber has made the decision to delay the start of my stem cell transplant by one week. They would like to see my WBC and ANC move up and they didn’t like the c. Diff.

So now the plan is to go to Boston on October 8th for the placement of the central line and be admitted on October 9th for the stem cell transplant.

Also, effective yesterday morning, my hair is no more. Back to buffs, hats, and a wig.

Just got my counts for today, ANC 0.2, platelets 10, and hemoglobin 7.2. So it will be a long afternoon into evening here at Smilow getting blood and platelets.