I don't look sick, but, you should see my insides.
Hi, my name is Dawn Marie. You might know me from the music world
, the tile world
, the holistic health
program at St. Catherine, from yoga studies
, from the cancer support group
, the English Springer
dog rescue group, as a classic film
lover or just because we have stumbled
across each other along the way. I've floated in and out of a lot of various circles over the years. If you know me well, you know that I have never limited myself because of illness, despite having been on this journey for a very long time. In the summer of 2007, I started feeling run-down. I finally broke down and went to the emergency room thinking I was dehydrated and maybe a little depressed. They admitted me to the hospital and gave me four transfusions that weekend, while they tried to figure out what was going on. Days turned into weeks and months. I had multiple tests done and we were getting no answers. Finally, in October of that year, I was diagnosed by endocscopic ultrasound with a neuroendocrine tumor on the tail of my pancreas. What's that you said?
Neuroendocrine tumors are rare neoplasms that occur throughout the endocrine system. Mine just happened to start on my pancreas. This is the same kind of cancer that Steve Jobs of Apple died from. These tumors secrete hormones that cause debilitating symptoms, so a medication called octreotide is given to help counterbalance the symptoms and slow down tumor growth. Since neuroendocrine tumors are rare, they are often known in the medical world as "zebras."What I have been doing.
Since 2007, I have vigilantly and aggressively treated my cancer with the tools that are available in the United States. I've had three massive open abdominal sugeries, did an unsuccessul round of oral chemo
and take painful monthly injections
every four weeks, plus subcutaneous shots
twice a day. Despite taking good care of myself and working with a multi-disciplinary team
, my disease has begun a farily quick progression that requires me to seek treatment outside the United States. My liver is riddled with larger and smaller tumors and they are growing at a faster rate than we have seen previously.Say what?PRRT
(Peptide Radionucleide Receptor Therapy) is a treatment that has been used in Europe for nearly two decades. It is only in two small trials in the United States, which are difficult to get into. I have been on a waiting list since 2014 for one of them. Sadly, I can't wait anymore. I need to get treatment now, so I am going to Switzerland to pursue treatment options. The good news is, I am an excellent candidate based on specific testing they require to assess candidates.So, what's this treatment going to do?
My doctor in Switzerland
has prescribed three rounds of PRRT. In my situation, he recommends one treatment cycle of 90Y-DOTATOC and two treatment cycles of 177Lu-DOTATOC in an interval of about 10 weeks.
He feels that the 90Y-DOTATOC is more effective for the treatment of my larger tumors with a diameter of more than 1.5 cm whereas 177Lu-DOTATOC is more effective for the treatment of the smaller tumors. Since the MRI scan from January 6th 2016 describes progressive larger and smaller metastases in the liver a combination of 90Y-DOTATOC and 177Lu-DOTATOC is likely more effective than a monotherapy.Packing my bags
What does all of this mean? I have my first treatment scheduled for May in Basel. Since this treatment is not FDA approved, it's unlikely that it will be covered by my health insurance. The treatment cost, which is all going to be out-of-pocket is roughly $12,500 per treatment, plus, there is airfare for myself and my Mom, and lodging for the one week that we will be in Europe during and just after my treatment. I will repeat this same process in July, then again in October. Best case scenario is that this treatment will slow down the progression of my disease for a few more years before we have to do another major intervention. When it is all said and done, I don't think I am underestimating that this will cost right around $45,000. When I return from Europe, I will likely be trying another oral chemo, which I may or may not have a great reaction to. Why this is so important for me and my family
Asking for help has never been my forte, in fact, I pride myself on my independence. My disease journey has been a massive life lesson that, sometimes, you have to let people help. Aside from the obvious toil this has taken on me emotionally, it is also extremely expensive. I have been fortunate to have worked full time, when I haven't been on medical leave, throughout my illness, and have had health insurance that covered a lot of what is available to me in the United States. Even with insurance, it still costs me thousands of dollars a year out of pocket. This new treatment plan is the most expensive yet for me.
I have been fortunate that my Mom and Sister have been able to help care for me during my many rounds of treatment. Driving me to appointments, caring for me post-surgery, helping to care for my pets, clean my house and being massively supportive, in general. Since I have been involved in so many different projects, I have a support group of friends that are awesome in so many ways. My whole disease course has been pretty traumatizing for all of us and we are all just hoping for a few more years of stability with my disease. I do a lot of work with my local cancer support group to help other patients understand treatment options and their disease. I have helped them with their website and try to help other patients as necessary, I'd like to be able to continue to do this good work for as long as I can, until, maybe there is a day that treatment options aren't so limited - or at best - there is a cure. Help me tame this wild zebra.
Dawn MarieI can't thank you enough.