The new year is here and my social media is bombarded with reflections of the past decade and goals for the coming year. While, under normal circumstances, I would find these posts heartwarming and inspiring, this time around is a little different. While everyone is excited for what the future brings, we have a different outlook and a future filled with uncertainty. In mid-December Matt's numbers climbed high enough to be considered relapsed. His numbers had been slowly climbing since July so we knew it wasn't far off, but it's still a devastating blow.
When Matt ended treatment his m spike was at a steady 0.15 and over the past four months it's reached 0.5, and most recently 0.6. (Just to put it in to perspective, his m spike was 4.3 when he was diagnosed.) We met with Dr. J a few weeks ago and walked away from the meeting feeling encouraged and hopeful for this next step. He began by reassuring Matt that he's already beat so many odds by responding so well to the first line of treatment, having minimal side effects and being able to remain off treatment for over 6 months. Dr. J told us that there is no protocol for this next step and every patient is different. He gave us his top 3 options; another auto transplant, wait for a CAR-T trial to include Matt's demographic - within a few months, or a clinical trial involving 4 drugs. He said there were a lot of other options but those were what he viewed as the most aggressive and most hopeful options at this point. After a long discussion and a lot of questions, we agreed that the clinical trial seemed the most likely to eliminate the disease. Dr. J assured us that we had time to decide and there was no major rush to begin the next steps because Matt's numbers were slowly climbing, not showing a strong resurgence of the disease. So after Christmas came and went, Matt decided to complete the paperwork and set up a consultation for the clinical trial. We are still awaiting dates for testing that will include a bone marrow biopsy, echo, blood tests, and a PET scan. Once those are complete, he can begin.
The trial will consist of four drugs (Kyprolis - which he was on before, Dex - the steroid he was on previously, Daratumamab, and Pomalyst). The trial will begin with infusion 2 days a week for the first 8 weeks. They begin the infusions slowly, taking about 6 hours, and slowly speed them up in the subsequent weeks. He will receive Kyprolis twice a week (infusion) for the duration of the trial, and Dara will slowly taper off; going from weekly for 2 cycles, to bi-weekly for 2 cycles, to monthly. He will continue to take Pomalyst at home every day and is very similar to the Revlimid he's been on for the past four years. He will receive the steroid Dex on treatment days. Of the four drugs, Kyprolis tends to have the most side effects and we are hopeful those will be minimal since Matt tolerated it so well in the past. From all of our research, people seem to handle Dara pretty well so we will keep our fingers crossed this new treatment plan is minimally invasive in our lives.
We scheduled a little get away with the kids to warm, sunny California before Matt begins treatment. He is tentatively set to begin in early February. The trial will last approximately 8 cycles, with the flexibility to end earlier or later based on Matt's response.
My feelings fluctuate daily about this new road ahead. I slide on a rollercoaster of emotions from hopeful and positive to frustrated and angry that this is a part of our lives. I feel different now than I did at the beginning of all this, both good and bad. I realized that I never had time to anticipate the future regimen because it began the day or two after diagnosis. We were in a completely different state of mind, a crisis, so our fears looked and felt different. Now we've settled in to the words Multiple Myeloma, we've done the research, and we've talked at length about options for the future. Now our conversations are about eliminating the disease and also maintaining the active lifestyle we've been able to create for our family. Our children still live in a world where this hasn't effected them, they just know that dad picks up a lot of medicine at Target. But it evens itself out because they know Mom goes to Target a lot anyway. :) So as we look at the year ahead, my hope for 2020 is simply that everything remains calm in our lives. It's not the inspirational, quote-worthy hopes that you find on social media, but it's where we are. Happy New Year my friends!
All our love,
Matt & Mandy
When Matt ended treatment his m spike was at a steady 0.15 and over the past four months it's reached 0.5, and most recently 0.6. (Just to put it in to perspective, his m spike was 4.3 when he was diagnosed.) We met with Dr. J a few weeks ago and walked away from the meeting feeling encouraged and hopeful for this next step. He began by reassuring Matt that he's already beat so many odds by responding so well to the first line of treatment, having minimal side effects and being able to remain off treatment for over 6 months. Dr. J told us that there is no protocol for this next step and every patient is different. He gave us his top 3 options; another auto transplant, wait for a CAR-T trial to include Matt's demographic - within a few months, or a clinical trial involving 4 drugs. He said there were a lot of other options but those were what he viewed as the most aggressive and most hopeful options at this point. After a long discussion and a lot of questions, we agreed that the clinical trial seemed the most likely to eliminate the disease. Dr. J assured us that we had time to decide and there was no major rush to begin the next steps because Matt's numbers were slowly climbing, not showing a strong resurgence of the disease. So after Christmas came and went, Matt decided to complete the paperwork and set up a consultation for the clinical trial. We are still awaiting dates for testing that will include a bone marrow biopsy, echo, blood tests, and a PET scan. Once those are complete, he can begin.
The trial will consist of four drugs (Kyprolis - which he was on before, Dex - the steroid he was on previously, Daratumamab, and Pomalyst). The trial will begin with infusion 2 days a week for the first 8 weeks. They begin the infusions slowly, taking about 6 hours, and slowly speed them up in the subsequent weeks. He will receive Kyprolis twice a week (infusion) for the duration of the trial, and Dara will slowly taper off; going from weekly for 2 cycles, to bi-weekly for 2 cycles, to monthly. He will continue to take Pomalyst at home every day and is very similar to the Revlimid he's been on for the past four years. He will receive the steroid Dex on treatment days. Of the four drugs, Kyprolis tends to have the most side effects and we are hopeful those will be minimal since Matt tolerated it so well in the past. From all of our research, people seem to handle Dara pretty well so we will keep our fingers crossed this new treatment plan is minimally invasive in our lives.
We scheduled a little get away with the kids to warm, sunny California before Matt begins treatment. He is tentatively set to begin in early February. The trial will last approximately 8 cycles, with the flexibility to end earlier or later based on Matt's response.
My feelings fluctuate daily about this new road ahead. I slide on a rollercoaster of emotions from hopeful and positive to frustrated and angry that this is a part of our lives. I feel different now than I did at the beginning of all this, both good and bad. I realized that I never had time to anticipate the future regimen because it began the day or two after diagnosis. We were in a completely different state of mind, a crisis, so our fears looked and felt different. Now we've settled in to the words Multiple Myeloma, we've done the research, and we've talked at length about options for the future. Now our conversations are about eliminating the disease and also maintaining the active lifestyle we've been able to create for our family. Our children still live in a world where this hasn't effected them, they just know that dad picks up a lot of medicine at Target. But it evens itself out because they know Mom goes to Target a lot anyway. :) So as we look at the year ahead, my hope for 2020 is simply that everything remains calm in our lives. It's not the inspirational, quote-worthy hopes that you find on social media, but it's where we are. Happy New Year my friends!
All our love,
Matt & Mandy
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