In 2014, Anne was diagnosed with MDS and AML. This diagnosis started her swift journey to transplant – she had a transplant within four months of her diagnosis. Anne talks about her transplant and Day 0. “It was very anti-climactic. You think that something like a 76-piece trombone band will be playing. But instead, a bag of cells was carefully transported across the Atlantic and walked into the room. It just goes into your arm - but you know that if you don’t get that bag, you’re going to die. It’s like a bag of hope.”
In 2018, Anne decided to explore clinical trials as a treatment option for her chronic GVHD. Anne had her eye on a specific trial that she had heard about from a friend, one that would treat GVHD specifically.
“The thing that struck me when I was looking at the drug was that it was meant for GVHD. I've been on a lot of different drugs, but they were meant for other things, like treating breast cancer and GVHD. This one was primarily for GVHD, so I knew I wanted it. Unfortunately, I didn’t meet one of the qualifications and was unable to join. Then, a member of the Clinical Trials Search & Support team (CTSS) notified me - I'm so thankful for that. The trials don't notify you. The CTSS team was astute enough to realize that the clinical trial guidelines had changed, and I fell within the trial qualifications. I was finally able to join.”
Once Anne had located her trial and was able to join, the CTSS team also let her know about the Drs. Jeffrey and Isabel Chell Clinical Trials Travel Grant, which is available to help patients with travel and relocation costs needed to access a clinical trial. “Money is just another thing to worry about. A lot of the hotels and travel needed aren’t covered. I felt more comfortable knowing that I was going to get money to handle this particular trial. It didn’t just help financially, it empowers you – it makes you feel good.”
Anne continues to fight the battle against GVHD, attending regular checkups as part of her follow-up care and trial treatment. She shared one piece of advice for newly diagnosed patients: “Hang in there, it’ll get better. You feel like you’re not going to make it when you first get diagnosed, but just hang in there and be specific about what you need. People want to help, let them know how. There is a wealth of caring people out there who want to help. I never realized, until I was sick, just how many kind people there are.”
If you have questions about the clinical trials for GVHD, connect with a clinical trials navigator by phone or email.