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Spine mets…..

September 4, 2016

Spine mets…..nasty little tumors that started out no bigger than the size of the grain of sand. There was one, then there was three, then there were five, then there were three, then out of nowhere somehow there are close to 20, varying in size and location.

The problem with spine mets, aside from radiation, ablation and all their subcategories, there are really no other options. Getting through the barrier of “hard tissue” with any sort of systemic treatment,is almost close to impossible. I’ve tried radiation, I tried ablation, I tried different forms of both- and my tumors are resistant to all of them. So…. The question is, where the hell do I go from here? 

They are a few new systemic immunotherapy treatments that we are investigating, all clinical trials with no data reported on whether or not they think they may have the capacity to reach the spine. Clearly the clinical trial I am currently on, is not able to, so I need to make some quick decisions to try and find something that has ANY potential to get these spine mets under control, since they have  begun to grow at a much faster rate. 

Thank goodness I have some phenomenal people who are working on figuring out which road may be worth traveling on. Everyone is trying to act quickly, emailing  throughout the holiday Weekend, discussing ideas and possibilities-because time is definitely of the essence right now.

So….not to be a complete Debbie Downer…but if you are wondering what spine mets feel like, or how I feel now, read this next paragraph. If you don’t feel like reading something even MORE depressing than the last few paragraphs, i would say DEFINITELY skip over this one:)  

The last three months living with spine mets:( They started two years ago, but that would be a lot to write about:)  JUNE: I went from having some back pain, to extreme back pain, to getting it under control somewhat, to then having some aches while walking… August: my foot began falling asleep, then my leg began falling asleep, then my whole left leg began going numb sometimes, then it began being numb more often than it wasn’t, and when it wasn’t  numb, the pain began getting COMPLETELY out of control. Then, when I realized that my entire spinal cord could possibly decompressing and I could become paralyzed, I went to the hospital on Wednesday.

Hospital stay: They put me on many pain medications, I had a causal epidural, I had an MRI done that showed what the CT scan two weeks ago did not show in my spine, and many other interesting adventures during my stay at Sloan. I was released yesterday, and headed right to the beach. I am waiting for the epidural to start to work, I am still pretty numb in my left leg, the pain in my back is a little less, and like I said before, I am working tirelessly on figuring out some sort of plan to move forward with. 

I can only imagine how depressing I sound right now, and how hopeless it all seems. But I’ve been in similar situations with my cancer before,where initially there didn’t seem to be a good road to try and travel on, times when there wasn’t a clear, laid out path to take, and many times when there didn’t seem to be any  treatments worth taking a chance on. And you know what? My rate of success in regards to finding a road, choosing a path, trying a treatment, having one up on this cancer, has been 100%.   What I am MOST grateful for, is that my rate of success at waking up another day to live this incredible thing called life, has truly  been 100%. And for anyone who knows me, I will do everything I can, to keep my rate of success the same moving forward. 

  1. Kelley orsini permalink

    You are one incredible young lady , never give up !!!


  2. Mary Murphy permalink

    You are an incredible lady, I wish you all the very best in your quest to find a treatment that works for you and very soon xxxxx


  3. Ann marie permalink

    Kristen just wanted you to know that Chris sent your post to his brother in law who is pretty high up in a pharmaceutical company he is going to look at what trials they have I will let you know any feedback from him


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