Kelly’s Medical Fund

Update posted by Kerry Fitzgerald On Sep 11, 2017

Clinical Trials Are the Name of My Game

Tony and I returned from Dana-Farber Cancer Center in Boston late Wednesday night armed with some good suggestions and a potential clinical trial.

My last PETCT at NHRMC (reviewed by Duke) showed the cancer being pretty stable in all areas except the right lung which is still problematic. The entire lining was “hot” on the scan. The good news is, as far as abdomen and other areas, it wasn’t nearly as bad as what we and the doctors were expecting. And whatever spot they thought they saw in the liver last time did not show up at all this time so Dr. Uronis said that means there’s nothing in the liver; nothing has spread beyond abdomen and lungs, which we will take as good news!

I have been off chemo for almost a couple months because my labs didn't meet the mark. This is a good time for trials, because they require a “wash out” period with no chemo, but I don't like doing nothing.

At Duke we discussed clinical trials with Dr. Uronis and were most optimistic about one at Johns Hopkins. I had already received the forms to sign and send all my medical records, and Dr. Uronis was in communication with them, looking into biopsy options. But once again, fate would not cooperate. The very next morning after getting home from Durham, the clinical trial referral nurse at Johns Hopkins called to let me know that two of the three cohorts (or groupings of patients around the country with specific mutations/variations) had just closed and that the trial director wanted her to let me know before I went through with a biopsy that I was almost definitely not going to meet criteria for the remaining open cohort. So, another closed door. Another disappointment.

In the meantime we continue to contact major cancer centers with impressive GI/billiary cancer departments looking for more potential trials. Most need a trackable tumor of a certain size (usually a 1 cm or 1 ½ cm) and a tissue biopsy. Not sure i will be able to “provide” either unless they can take a biopsy from the pleural lining (lung wall) and can track the thickening of the lining. Dr. Uronis is looking into this. So this is a strange predicament. My tumors may be too small for clinical trials at
this point. Not necessarily a bad thing!

One of the hospitals that was recommended to me was Dana-Farber Cancer Center in Boston. Dana-Farber, Brigham & Women’s Hospital and Massachusetts General are all teaching hospitals affiliated with Harvard. Even though there did not appear to be a clinical trial appropriate for my situation, we decided, based on the excellent things we read about the team and facility, to go there in person, to get into their system and meet face-to-face with one of their top specialists, Dr. Abrams.

Dr. Abrams said I’m doing all the right things. Staying positive. Staying open and flexible. Doing my homework. Reaching out to all the right people. He said despite everything (weight, anemia, labs) I still have a lot of fight in me and am a good trial candidate. He said trials are all about timing and are very hard to get into because of all the red tape, and as far as prioritizing one over another, he said “Get into whatever you can.” He said that he would connect me with Dr. Rama, the head of the CIO department there (Center for Immuno-Oncology) and that they may have a trial for me.

He said “You are in a very precarious position, the equilibrium can swing very quickly either way, and you need to be under very watchful decisive, dedicated eyes.” Unfortunately last month at the same time that my labs became unstable and my lung became a big issue, Dr. Uronis was on a much deserved vacation and my oncologist in Wilmington was involved in an accident and was out for a few weeks with serious orthopedic injuries. So we need to remedy this situation locally. We are also continuing to contact other facilities and have made some good headway with Mayo Clinic too. There's just so much info coming at us.

The morning after our appointment we were walking around Harvard Square and got a call from a cheery nurse with the CIO clinical trial department. She was very enthusiastic about a trial that they are currently conducting that they have had some good success with that may be good fit for me. She said that Dr. Rama would like to get me in as soon as possible for assessment. We have an appointment to go back in a week or so, and if we agree to it, scans, labs, EKG, then possible biopsy, and all that jazz. It is only a phase 1 trial, and I need to discuss with Dr. Uronis and my team, as well as talk about the other suggestions from Dr. Abrams. Of course, there’s the never ending paperwork, logistics, insurance and billing issues to deal with. And draining my lung every other day at home, which Tony is now handling like a champ. I’m struggling with fatigue, and other boring stuff, but I'm hoping to find ways to feel better soon.

We met some wonderful new friends in Boston, Jen and Paul who made us a fabulous dinner and hosted us at their lovely home (which much to Tony's delight was the former residence of Tom Hamilton, bass player from Aerosmith – and the site where the band formed was around the corner). We are so grateful for them and all of those who helped to get us to Boston and continue to support us in so many ways. Lisa Rumsfeld made that intro for us, and has done more than we can say to support my path to getting better (in the middle of a huge job change and continental move). Big thanks to dear friends who kept Zaida and Wyatt while we were gone – the Neuherz and Lewis families. Zaida and her friend Rachel and Wyatt and his buddy William have such special bonds. Their friendships and their parents’ willingness to help us out in such a big way … HUGE! Thank you thank you thank you.

Thanks for your responses and updates on your own lives and families. I love that. Love catching up. Talking on the phone right now is tough, because I get out of breath, so the written replies are greatly appreciated.

Also, over the past couple years, countless friends and loved ones have let us know that we can call on them for anything, to let them know what we need - and we appreciate that so much. I just want you all to know that our energy now is on trials and consuming information, setting things up. We are out of steam for answering questions. And I desperately don’t want to put the burden of fielding calls or delegating to on my parents or the Fitzgeralds because they are in the trenches with us and have so much heavy stuff going on in their own lives. I want your to know we feel so cared for, supported and loved in a million ways. Everything you have done or are moved to do is so absolutely perfect and needs no approval. If you have time for a visit, just let me know when. I’d love to see you. You are all absolutely amazing and touch our lives on a daily basis whether you realize it or not! We are grately for your prayers, and you are in ours.

Lots of love coming at you,

Kelly

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I’m completely overwhelmed by this flood of support. Can’t even look at this website without breaking down. Thank you all so much. We are so lucky to be surrounded by such an amazing circle of friends and loved ones. People are so kind, so good, so generous. Thank you for lifting us up. With all my heart, wishing you peace and love. Thank you for keeping our hope alive, Kelly

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