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!

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Heather

I never thought I’d be writing a blog, and certainly not one that is all about me, and yet, here I am. For me life has always been interesting, not mundane, not always exciting per se, but hardly ever the norm. When I say “It’s always something…” I don’t hear it as my life is a mess, it;s always something. It’s more of life is challenging and evolving and messy and inspiring and wondrous, it’s always something. I grew up in suburbia, buy my grandfather was the head of the Communist Party in the U.S. I was raised keeping that a secret, so that was something. I am tall, always have been, really tall (6’1″), I was taller than every human being in my elementary school when I was in 6th grade, that is still something. My parents divorced in my teens. I got a full basketball scholarship to Duke University. I married my high school basketball coach, 18 years my senior. I raised a stepson. I had two amazing kids of my own. We had a multicultural household, secular christian (I guess that’s what I would call it, you know Santa and the Easter Bunny) and Judaism, I used to say if it was a holiday – we celebrated it! We were uber involved in our community, mostly through youth athletics, coaching, managing and spectating. Our kids grew up, I started a photography business on the side (I hope to share some photos here) and we planned to travel a bit together, went to Portugal for our 25th anniversary and then my husband was diagnosed with stage 4 prostate cancer, initially they gave him 5 years, but he only survived for a little over two. I was going to say lived, but really, it was more like surviving. That, indeed, was something. I became a widow at 49. It was the worst thing that ever happened to me. But, then it was something in another way. I relearned who I was. You don’t realize how much of you becomes a combination of you and another person in a relationship. And not in a bad way, it is essential, and you don’t lose yourself, you just evolve. And I found myself suddenly alone, and learning about myself and who I had become over the years, what was just me, and what was part of who we were together. Which in retrospect, was probably hardest on those around me who had gotten used to the old me, or never even knew the original me. A year later I found love again. Sold my home of 31 years and moved closer to work. I became more fit, ate more healthfully and was amazed that I could be happy, truly happy, in the wake, no not wake, but the shadow of such profound grief. And that is truly something, something amazing and unexpected. And then, through some routine blood work in April 2014, and a visit to a hematologist and bone marrow biopsy in May, I was diagnosed with multiple myeloma. And so, yes, for me right now it’s multiple myeloma, but that is not all, there are still highs and joys, and the mundane and the rest, but something like cancer does cast a pretty long shadow.

6 thoughts on “New Menu”

  2. That’s an unbelievable regimen. I have enough trouble keeping track of 5 tablets and glasses of water! I’m so glad to hear that you’re feeling stronger and healthier Love you.

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  5. Its mind-boggling how you manage EVERYThing. So glad to hear and see you feeling good. Sending love and prayers that you continue to kick butt.

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  6. Lovely nurses and lovely medications. Much to celebrate! Thank you for the continuing vocabulary lessons. Medicine names are a challenge! I like it!

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