This quote popped up on my calendar earlier this week and was a fun reminder of years ago in elementary school. In 5th and 6th grade I attended a special class with children from all over the county. I remember and think often of the good friendships that were made in those year. It was where I first met my best friend Leah. One year we put on a presentation of the Wizard of Oz. I shared the roll of the tin man with my friend David. My best friend Leah played the wicked witch. Oh... "what a world, what a world" it was! It was fun being reminded of the simpler time of childhood and the friendships that were made. Our lives have changed so much since then, as we've all faced different challenges.
However, back to the current time... it sure has been a crazy couple weeks. The test results to identify the masses in his lower abdomen took longer than we anticipated and when they showed up in his "My Chart" we were a bit overwhelmed with what they said. There were a lot of terms that we weren't familiar with. Here are a few of them:
- Special (Congo Red)
- eccentricity of the nuclei
- moderately pleomorphic nuclei
- plasmacytoid morphology
- Immunohistochemical
- polymorphous lymphocytes
- plasmablastic morphology
We learned that Congo Red is a special stain that they use to test of Amyloid. We felt fairly confident that the test results were indicating that the masses weren't Amyloidoma's. We also couldn't see anything that would indicate that they were any kind of secondary cancer, so that was comforting as well. Other than that we had to wait to know what his team would say.
We met last week with Mary. She confirmed what we had deduced and said that they were mostly made up of plasma cells and the masses were related to his myeloma. (No second cancer...an obvious win). We went back and forth about if they were old or new, but there's really no way to know. His blood markers were showing progress that DRd was working so we said we wanted to do at least one more cycle and then re-evaluate. We would increase his Revlimid from 10 mg for 21 days to 15 mg for the same time.
So this week we went for his Dara infusion, which for some reason took forever! We always have to wait for several labs to come back, and then for pharmacy to mix up the formula for Dara. But things were extra slow for some reason. This was cycle 45 of Dara, combined with the 5 cycles of CyBorD made it his 50th cycle chemo. Monday also will be 4 years since he was diagnosed. Not sure what you are supposed to do for a "cancerversary" celebrate that you are still alive, mourn the day that cancer came into your life? Laugh, cry? All of the above? What a crazy four years. We knew at the beginning that there was a possibility that we might not even reach this point, so we are very grateful that Chris is still fighting hard and for the blessing of being able to be together 24/7 without being stuck in the hospital.
Dr Sborov called the next morning. He had been discussing Chris's case and PET scan/Biopsy results with his colleagues. The plasmablastic features indicate that the myeloma is more aggressive and indicates that they are likely new. The lack of CD-38 on the cells is a sign that we should move to something different. Dara works because CD38 is highly expressed on myeloma cells.
He suggested a few other ideas, but his suggestion is to change to is
EPD - Elotuzumab Pomalidomide Dexamethasone. Elotuzumab (Empliciti) is an infusion that targets CS1 or Slam F7 (as opposed to CD38). It is given weekly for the first few cycles and then similar to Darzalex can be tapered down. Pomalidomide (Pomalayst) is the next generation of Revlimid. It is up to 10 times stronger and so can be taken in smaller doses (they range from 4mg to 1mg), and potentially have less side effects. It also follows the similar dosing of 21 days on, 7 days off. Dex (the steroid) is pretty much a standard in any cancer treatment
They had previously talked about changing to DPD (Dara, Pom, Dex) and we had been resistant. For whatever reason it didn't seem right. We didn't want to give up on a medication that was working, but Dr Sborov said that we could come back to DRD in the future.
So, cycle 45 has become the shortest yet. The day after Chris had Dara and took the first Revlimid of the cycle, Dr Sborov said to stop. He wants Chris to feel as strong and good as possible for starting EPD. It's always stressful and a bit scary to give up the familiar to start something new, we are so grateful for the peace and reassurance that we both feel that this is the right move. They are still working out the details and getting insurance approval, but he wants to start as soon as possible.
So as we turn the page of this past chapter and start the next, are again reminded of how lucky we are to be loved. We have been blessed by: a cousin who filled our fridge with lots of easy to heat meals, a "wicked witch" who got us hooked back on Crumbl cookies, an awesome friend who supplies our SWIG cravings at expert timing, a friend in Italy that will take time to chat with Chris at 4AM, nephews and a niece who will play games and bring fun visits, an aunt who happened to be in the right place at the right time to give amazing hugs. As well as friends who have shown up to hang out on the lawn or back yard for fun evening of chatting. A new boss who immediately says "How can I help?" even though he is juggling about a million things already.
And I would be amiss to not mention, how grateful I am to be loved by my amazing sweetheart. Someone recently commented that it's amazing how much we smile and laugh, even though so much is going on around us. Being so in love really does bring much happiness into our lives.
With one step in front of the other. Here we go, off on a new adventure.
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