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the quest and the hope..i hope…

ok.. believe it or not. this is the short version of the story.

i have multiple myeloma. there are many different types of this disease. basically it means tumors in multiple places. because it is a cancer of the plasma cells (immune system) and bone marrow. i haven’t received treatment yet, because i haven’t experienced any symptoms yet. symptoms include organ failure, fractured spine and opportunistic infections. i know what you’re thinking, that’s the SYMPTOM? sounds like the end game to me! and thus begins my search for treatment options.  super easy to understand 2 min video that explains myeloma better than me. 

myeloma has no cure. you don’t “BEAT” myeloma. currently, winning means living with it for as long as possible with a good quality of life. some people can live with it for many years kind of “smoldering” with pain and infections, but without any “symptoms”. in the recent past (last fall!), only until patients expressed symptoms did they treat the cancer, with some very disabling treatments that destroy quality of life.  you may improve your numbers, but disease never goes away completely and ALWAYS bounces back. and the time to the next relapse can be weeks. eventually, patients run out of treatment options, because myeloma is a smart disease that mutates. i know as long as i am alive, that i will be watched or in treatment.   a short film about myeloma

i really don’t want to have a treatment that destroys my quality of life, not because of my needs, but because of how that will impact my young family and because i want to be in relatively good health for when a cure comes around. standard of care is a stem cell transplant which includes a quarantined hospitalization and extensive recouperation, and standard drugs are daily chemo and steroids that are intense and even disabling for many.

for as long as i am here, i am first and foremost a caregiver to my child. if there were anyway, i would much prefer to not be physically compromised or unable to be exposed to germs as many of my fellow warriors are.  i dreamed of a treatment that i could receive prior to the development of any symptoms, and one that would not require me to be away from my family for long hospitalizations or quarantines, or highly toxic and disabling continued chemotherapy.

since my diagnosis, i have been blissfully living my life as though i don’t have cancer, let alone a cold. i continue everyday managing my responsibilities without interruption. and i plan to continue in that vein!

however, in recent months, a MIRACLE has happened. in my quest for a treatment to help head off crippling, life-ending symptoms, i have made friends online who know more about this cancer than many doctors! they attend cancer conferences and read research papers, they share their experiences in clinical trials. and during this time, i learned about an amazing new drug from one of my support group leaders. that drug completed trials for relapsed patients, received FDA approval and is now in a clinical trial for never treated high risk smoldering patients in the scant 1.5 years since my diagnosis. MIRACLE.

even though my oncologist “dr. sergio” (angel in a bowtie :)  is the head of the transplant service at sloan-kettering, he immediately referred me to the head of myeloma service for this trial.  the dr running the trial is the premier specialist in the world in this particular research.  there will only be 20 patients participating at MSK and 120 worldwide. i met “dr. ola”  in person for the first time today and he was wearing a black turtleneck and reminded me a little of one of the djs from my swedish drum and bass label!  i am so blessed to be under the care of two of THE best specialists in the world.  immunotherapy in myeloma

he offered me a place in the daratumumab  (darzalex) trial. multiple-myeloma-drug-offers-hope-after-others-stop-working

i begin a month’s worth of numerous screening tests next week to determine, if i indeed clear all the obstacles.

the drug is a monoclonal anti-body. it seeks out the surface cd38 found on myeloma cells and destroys them. sounds like a dream.. right? :) i will be among the first people to have taken this drug as a frontline therapy, and that’s a little scary. i will be kind of an astronaut. but, so far, there are very few side effects and it will be given without parallel therapies and drugs. so, it is pretty much the dream for me. by all accounts, we can be sure that i will be extremely tired (as in sleeping.. alot), and depending if i require steroids, irritated and aggressive (what else is new?) the rest will be a mystery.  monoclonal antibodies: how they work  (they don’t mention myeloma, but that’s because it’s new!

now, the kind of “not so rainbows and unicorns” part of the story.

the reason that i qualify for this clinical trial is because i have some high-risk qualities to my disease and pretty crappy indicators for low overall survival. and this past week, i had to have some very sobering conversations about the statistical importance of that. even though, i was thrilled to be able to access this trial, this was not necessarily a club i really wanted to belong to (no insult to all my new warrior friends!)  i also felt like, i wanted to “watch and wait” a little longer. my child is so young and this will impact our lives so profoundly, but it hardly feels like a choice anymore.

because of my cytogenetics, (omg.. i won’t get into all the boring details) but i have del 17p and 1q gains, the period of time between my relapses and my overall survival rate is greatly diminished. in other words, the clock is ticking.  when you have some of these cytogenetic factors and my IGA classifcation, you hear numbers bandied about like 2-3 year overall survival after becoming symptomatic.

also, this particular disease does not respond well, or at all to chemotherapy. so, i do not want to wait and be in a position where i am receiving a standard of care treatment that will not only greatly reduce my quality of life, but really may not help me at all.

so, my decision to move forward with a trial was combined with the thrilling opportunity to be an astronaut in the world of medicine and boundless hope that i will win this race against the clock to keep well enough until a cure is found, and  a very stark realization of why this is so necessary, which i am still processing.  so do tread lightly please.

 

 

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