My name is Lynne Dagata and I would like to thank you for welcoming me to the CML Buster Foundation. I have been Facebook friends with Joannie Clemmons for many years and finally met her and Jerry in Washington D.C. while we were advocating with the Leukemia & Lymphoma Society for drug parity laws on Capitol Hill.
My story is unique, as all of ours are. Back in 2003, I started sensing something may not be right with my health. I was 39 and did what I shouldn’t have, which was to ignore it. I hardly ever went to the Dr. let alone take a Tylenol. Then Vertigo hit me for 3 months and many additional aches and pains. I decided to try acupuncture, and it was fantastic. I felt, okay, but not perfect, but it was such an improvement. Flash forward to 2005, I assumed it was my fibroids triggering the condition I was in at that time. I was unable to walk more than 50 feet without having to sit down, I was gray, too thin, and just simply ill. No one immediate to me said, “hey Lynne, you don’t look well, you really need to go to the dr.”. It’s quite possible that they assumed I would scoff at them. The reality of it was that I was terrified of what they would find.
I volunteered for my children’s Music Boosters and a classmate’s mother needed help with her printers. I worked as an Assistant IT Manager, so I said let me take a look for you. She really was just an acquaintance at the time, but she literally saved my life. A virtual stranger handed it to me straight. We talked for 3 hours and she gave me her gynecologist’s phone number and schedule an appointment.
On appointment day, April 7th, 2005, I walk in and introduce myself, and did my usual self-diagnosing. I said I just need an ablation or just a hysterectomy. She took one look at me and said we are going to do bloodwork first. Looking back, she already knew I didn’t need any of those things. She did her exam and said she would send my bloodwork results to my primary care dr. I have been with my primary care dr. for 35 years, he’s only a few years older than I am. He recently informed me of his impending retirement. I’m so upset but the bond and relationship we have together could perhaps be an entire novel.
I happened to have an appointment with my GP for my annual physical the next day, April 8, 2005. It was very early in the morning and he asked how I was feeling and I informed him not so well but you’ll be getting bloodwork results from my gynecologist. (He also diagnosed my two autoimmune diseases well before CML) I continued my day and off to work I went. It was 3:30 in the afternoon his nurse called me and asked if I could return. I thought what did he forget? She then replied, have someone with you. *Note: don’t bring your mom, they are too connected. I brought my mom. My ex was at work and considerably disconnected when it came to me. It was 6 pm when I arrived and my dr. came out with tears in his eyes, grabbed me by the hand, squeezing it hard, and lead me to his office. We all sat down and he sighed and leaned forward to hold my hands. He said you have leukemia, we just don’t know which one yet. I was numb, frozen, had questions, my mom was straight out of General Hospital. Do the tests again, it can’t be right!!! He had, by now, made all of my appointments. Although he tried to get me in the hospital, I said no, my eleven and thirteen year old were home alone. I needed 2 units of blood immediately. My hematocrit and hemoglobin were so low that I was a walking heart failure. I promised I’d be at oncology by 8 am. He made it very clear if I weren’t, he’d be at my door. April 9th, I sat in oncology getting my 2 units of blood and contemplated how and what to tell my children. My bone marrow biopsy was scheduled for the next day, a Thursday. Friday, I met my oncologist who told me I had CML. They weren’t sure if Gleevec would work since I was in blast crisis.
They started on Gleevec immediately and also 12 weeks of iron IV treatments. BUT WAIT that’s not all. I’d get my period and I would need another 2 units of blood. I ended up, in the end with 8 or 10 transfusions. It was push and pull, I couldn’t really get that response expected today. At some point in June, my gynecologist called and told me my pap smear was suspicious and she needed to do a colposcopy. Those results were not good. It turned out to be Cervical cancer. She, in fact, wanted to treat it. She and my hematologist tussled over this and she agreed to a hysterectomy ….in August. I needed another transfusion and I said that it was going to kill me and I am not waiting until August, so Tuesday it was.
I loved my new oncologist who Fellowed at Dana Farber in Boston, he was remarkable. Then he moved to Vermont and sent me to Dana Farber to a dr. who, 2 years from that point would nearly kill me. That was the moment I realized how tremendously important it is to be your best advocate. Also, Dr. Google is not your friend if you aren’t internet savvy.
On Gleevec, my PCR never went below 1%, it hovered between 1-3% for 6 years. This dr. did football plays and was very patronizing. Apparently, he thought my numbers went too high and doubled my already debilitating dose from 400mg to 800mg. I was still working 50 hours a week. This increase led to me calling out of work and sleeping about 18 hours a day. I knew he made a dreadful mistake. This was at some point in 2008. I Googled Dr. Brian Drukers’ email address and told him my saga and asked if this dr. should have retested first. There was very little information excluding pamphlets I received from LLS, which were helpful but not as in-depth as I needed or wanted. This wonderful, tremendous, humble human being returned an email in 5 minutes when I couldn’t get the Boston dr. to return a call or email in weeks. Dr. Druker said let’s make an appointment. My brother lived 2 hours south of Portland OR, so that was immensely helpful. Navigating the insurance company, which absolutely loved denying all of my claims, was proving to be a challenge, in a good way and a bad way. I learned more than I thought could happen to someone as ill as I was. They said they would not cover OHSU. After days of research on my own, I found a loophole. OHSU was an approved transplant hospital with my insurance company. A-ha, gotcha. They covered it.
I fired my Boston dr. and flew to Portland annually and returned to my original, small town hospital in CT to a new routine hematologist. She had never had a CML patient before. She was fabulous and followed Dr. Drukers’ lead. I finally felt confident in my healthcare, with the exception of the horrific side effects. If it was listed, I had it plus some. My new Dr., Dr. Brandt, and Dr. Druker decided to try Tasigna and I was thrilled. I immediately lost 40 pounds but, it turned out to be very toxic to me even on a lower dose than recommended. I actually begged them to let me ride out the side effects, but my liver, kidneys, pancreas, hair follicles were all disagreeing with me, PCR rising. So back to the dreaded Gleevec. Don’t get me wrong, I wouldn’t be here without that remarkable drug. I was just one of those who reacted terribly to it. It kept me alive to be able to let you know where I’m going in my article.
After six more months on Gleevec, and even more extra, joyous side effects, we decided to try Sprycel, I was ecstatic. In 2010 I started 100mg of Sprycel. Side effects were much different, much more livable. Unfortunately, I am one of the rare people whose side effects keep getting worse the longer I continue the drug. My numbers were great on Sprycel and hovered a little over the line. I lost 50 pounds which was not acceptable. I am 5’7” and I was close to 110 pounds. They called it medicinal anorexia. I didn’t realize how thin I was until I saw photos. I didn’t mind, it was better than having accidents in public at 39. All of my dr.’s agreed that I needed to bulk up. I hit the gym and was in the best shape of my life at 50 years old. I managed to put 20 pounds of muscle mass on. I pushed on for 4 years and was finally able to deal with the side effects, I went gluten-free, which rid of my rash and helped stomach issues.
I was involved with another CML non-profit group and went to NYC to volunteer for our NYC Marathon team. That is when I met Dr. Michael Mauro, who assisted Dr. Druker with the creation of Gleevec and also his colleague in Portland. We all went out for Japanese fare that night, Dr. Mauro’s wife and daughter joined us. We got to talking and I expressed how much I loved Dr. Druker but I really needed to cut out the middleman since NYC is 65 miles away, we made a decision and Dr. Mauro became my sole oncologist. Well, that’s not quite true, he did inform me he continues to share my progress with Dr. Druker.
Fall of 2014 my brother invited me to Costa Rica for Christmas with his wife and friends. He told me not to worry about the money, he thought I just needed to do something fun. I was all over that like sand on a beach. Then a dreaded call from Dr. Mauro, he said my PCR has been on the rise and it wasn’t good. He did a mutation analysis and I indeed have the f317l mutation. I believed my trip was ruined. He said we’d have to raise the dosage of Sprycel to keep it in check. After my first PCR on a negotiated higher dose, he cleared me to go and have a fabulous trip.
When he originally told me Sprycel wasn’t working anymore, is when he gave me the news about this new trial getting rolled out. It was called ABL001. He said we need you to hang on until I get this off the ground at MSKCC. April 10, 2015, my cancerversary week, I officially entered the phase 1 clinical trial of ABL001 as Dr. Mauro’s patient 001. By luck of the dice, I was to begin on the highest escalated dose of 200 mg twice a day. I had complications the first year with my pancreatic enzymes, liver, blood pressure. None of the side effects were any worse than the previous TKI’s I had been on. We lowered my dose twice and I am currently on 80mg twice a day. The most remarkable result of this drug was that after my very first PCR test, I was undetectable. I could not believe it. After 10 years, what? I was undetectable? It’s been almost 7 years and I have been undetectable this complete time.
I’ll tell you why I chose to enter a clinical trial. I spent my vacation in Costa Rica discussing this with my brother, also my perfect stem cell match, and it seemed like the best choice. I wasn’t ready for a stem cell transplant. My kids just weren’t kids anymore, they were in their 20’s, I was an empty nester, divorced, and only needed to answer for myself and my fiance, with a little trepidation, cheers me on. I was not frightened to pave the way for others. It’s how we get these marvelous therapies. We were excited that it was FDA approved because Dr. Mauro wants to try treatment free, then I found out I am still in the trial. He said you could drop out if that’s what you really want to do. I said I didn’t go this far, this long to quit. I am not sure how long treatment-free would be an option but I’ve never had a deep response, let alone for 7 years. If my data helps, then I’m in it until the end.