And sometimes it means two hospital admissions, infection with fever, and some cognitive confusion.
I’m home now resting with twice weekly visits to Smilow, getting some blood products. And I’m taking care of a boatload of details with the help of my supporting cast.
Thanks for all your love and support.
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!
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!
The last few weeks I have seen a slow progression to my normal self. Little by little. I’m not there yet, but I do feel like I am getting there. A couple of weeks ago I celebrated the first day I was able to shower, dress, and “put on my eyes” without having to rest in between. And I am now back to post-dinner kitchen clean up duty. Still walking every day and able to go farther and even a few steep hills.
I visited Dr. Munshi at Dana Farber on November 11th. It was Day +31. Day +30 was a big turning point as I am finally able to eat food made outside my house! (Along with most of the other restrictions being lifted.) The visit was not too exciting, which can be good, right? Mostly, a review of meds, where I was at, etc. And all of my numbers looked good.
I did discuss my return to work plan. They gave me a few warnings about going back to soon, andI took it to heart. They also have not yet decided what my maintenance therapy will be. They have some time yet as I won’t start maintenance therapy until I am 3 months out (January 12th or thereabouts). That is also when I can get my flu shot and restart my COVID-19 vaccination. At 9 months out I will start receiving all of my other vaccinations (again).
I will be returning to work (although working from home) on December 2nd. I will work part-time, short weeks until after the Christmas recess, January 3rd. I am lucky to work with a great time who covered for me twice in 2021: Katie, Christine, Lisa, Denise, Ariel, and I am sure others who weren’t “officially” covering! I truly can’t thank them enough.
And the next visit to Dana Farber is on December 16th for another follow-up.
The first week home I was very tired and still needed to take anti nausea meds 2-3 times per day. The last few days I finally feel a little better than that, not as tired, still have queasiness but I am not taking anti nausea meds any more.
I have to give credit where credit is due for this. I started walking every day (as required). And thanks to my friend Lisa (an oncology nurse) who asked me if I was walking and mentioned that it makes a big difference. Indeed it does.
Photos are from right before I left for Boston, but my hair looks exactly the same (maybe a fraction of a centimeter more of fuzz).
On my way home!
Maintained a fever in the low 100’s all day so now it is looking like discharge tomorrow. My 7:00 temp tonight was 98.3.
Stay tuned.
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.
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.
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.
It's Always Something 