Published on July 16, 2019
No two chronic lymphocytic leukemia (CLL) patients will walk the same path, through watch and wait and likewise through treatment, outcomes and tolerance vary from patient to patient. Here is my story of treatment and healing both physically and mentally.
After three years of watch and wait, treatment was calling my name. In 2017 we were (and still are) in an age of discovery; learning what are the best therapies. That question remains as scientists and doctors learn from us, right now. WE are the generation of CLLers lending our collective experience to determine the “best treatment.”
Treatment game-changers – I’ll take them all, please.
I knew early after my diagnosis that I wanted to partake in a clinical trial to help propel science for future generations but also selfishly, as I felt strongly that trials held the best medicine for me. Knowing my complex karyotype most likely would not respond well to chemotherapy, I spent many days, weeks and months head down researching the brand new and shiny targeted medicines that were seen as game-changers in the treatment landscape.
At the time, ibrutinib (Imbuvica) had been in trials for some years. The first targeted medicine for CLL; it was known to be an excellent shrinker of nodes and spleen, almost immediately flushing the CLL cells out into the blood stream while slowly lowering ALC. Ibrutinib however was not getting patients to MRD negativity and patients were at the time continuing on med indefinitely.
Venetoclax (Venclexta) had more recently come on the scene and showed great efficacy in roto-rootering the bone marrow. Its CLL destroying power was evident in the early trials, where sadly two patients passed from the unexpectedly rapid CLL cell lysis resulting in tumor lysis syndrome (TLS). Learning how to titrate and harness the power of venetoclax became an evident must.
Monoclonal antibodies (mAbs), which had been around for years, were getting a remodel and second and third generations of rituximab (Rituxan) were born. Obinutuzumab (Gazyva) was being incorporated in trials as showing some benefit over Rituxan in some groups.
In my mind, I saw great synergy in combining the above therapies. I imagined ibrutinib flushing out the nodes sending those CLL cells into the bloodstream where venetoclax would eviscerate them. Obinutuzumab would be icing on the cake.
Ohio State University had this combo trial. Although I lived in Maryland, I was willing to make the trip with the goal of MRD negativity in mind and hopes of the most durable remission possible. OSU here I come!
Trial by fire
I was patient number 69 in a 70-person cohort of treatment naïve individuals. There was not one part of me that was afraid of treatment. I had lived for three years with this disease insidiously growing in my bones and blood. I was READY to be done with CLL and take on the foe that threatened to limit my time with my three young children, family and friends.
After all of the requisite paperwork, various scans and tests, it was time to start treatment. The protocol was to begin with obinutuzumab, then add ibrutinib and, one-month later, venetoclax. My oncology nurse John told me that his nickname for this trial was “the nuclear bomb” because of its strength, yet patients seemed to be tolerating the treatment very well. Anecdotal evidence showed that patients were still able to work through treatment, taking time off only for infusion days. Accordingly, and because I would be in Ohio, I decided to take a three month leave from my work at The Leukemia & Lymphoma Society to allow me to get through infusions and the start of Ibrutinib and Venetoclax, the latter was understandably closely monitored titration which required a lot of time at the hospital.
My first trial day had arrived where I was to receive just 1/10th of a dose of obinutuzumab. I was prepared for the common infusion reaction and did experience some chest tightening, flushing, and nausea but got through it without stopping the infusion. John stayed with me the entire day calmly talking me through the infusion reaction and answering my questions. To me the ill feelings just meant “this is working” and I took it in stride. I was finished early evening and went to dinner with my husband and then back to the hotel for a much-needed restful night before the next day’s infusion of a full dose.
I awoke around midnight that night and knew something was wrong. I had a fever and just felt like crap. My whole body hurt. Per instructions I went to the Oncology Emergency Room and was admitted. Labs showed I had grade 4 liver damage – my ALT and AST (liver enzymes) were off the charts. The next day my chest X-ray showed pneumonia and my vitals began to go haywire. My blood pressure was dangerously low, my heart rate was very high, and breathing was becoming more and more labored. My respirations were 60+ per minute. Yikes. I was given IV fluids to help bolster my BP, but the fluid just accumulated on my abdomen and chest making breathing that much harder. I gained 20 pounds in just two days! On the third day, my right lung collapsed. The full body pain was like none other I have experienced. I remember the simple act of reaching for a cup of water would render me breathless, and I just cried in pain when the fever roared through my body every few hours. The nine days in the hospital with septic pneumonia were a blur of tests, multiple IV lines at once, constantly breathless, and the huge fear that I would be kicked out of the trial. I desperately wanted my chance at a cure.
The remainder of my 16-month trial was an exercise in pain and adverse events. Although the youngest patient in the trial at age 42, I probably experienced some of the most side effects. Ibrutinib caused severe joint pain, an auto immune painful rash of hot welts called panniculitis, severe colitis, pain and diarrhea for several months, unstoppable menstrual bleeding for months that required emergency embolization of my uterus and multiple blood transfusions. My already sucky immune system was weakened by treatment and then further compromised by the nonstop steroids that I needed to tolerate ibrutinib. This resulted in septic pelvic inflammatory disease caused by urea plasma, a normal vaginal microbe that grew out of control for months. I endured months of random infections that a normal immune system would have just shrugged off…mine was overwhelmed by Fifths Disease resulting in massive joint swelling that caused nerve damage, and sudden severe anemia, hence more transfusions and hospitalizations. C diff and Salmonella literally gave me a one two punch in the gut (ha-ha), and system wide inflammation from ibrutinib gave me pancreatitis and cystitis. I spent a year in bed dealing with all of this with what felt like non-stop fevers, night sweats and tremendous pain. My year plus on steroids came to an end along with the end of CLL treatment as the side effects were deemed too much by both the trial team and myself. I was deemed intolerant of Ibrutinib.
Upon stopping the CLL meds and steroids, I began to get sicker. My hair began to fall out, I had zero energy, more diarrhea and the most intense abdominal pain. I was later diagnosed with adrenal insufficiency, as my adrenal glands had stopped functioning. An unrelated kidney stone and back surgery rounded out my 2 years of health hell. Sigh.
Rebuilding, restructuring and redefining happiness
I came out on the other side of treatment extremely weak and with a great case of chemo brain. I also gained 30 pounds from steroids (think moon face) and had the most frizzed hair ever! It wasn’t pretty, but I was in complete remission! My memory was gone. I could barely have a conversation, because words would not come to me. So, when I attempted to go back to my full-time job as a senior campaign manager, I just could not do it - physically or mentally. I needed more time to get well and needed to rehab myself. I left the job that I loved.
Side note, after not working for two years and incurring medical costs galore, my husband and I decided we needed to make some financial changes. We sold our home and moved to a small townhouse. It was hard to leave the home where we planned to continue raising our three children and even harder to admit that we were now struggling financially, on top of everything else. One-third of cancer patients will need to file bankruptcy, so this change was not devastating to us but nonetheless, not welcome.
Moving also required someone - and by someone, I mean me - to walk our black lab Ellie daily. We no longer had our big, fenced-in back yard. I began walking her twice a day much to my chagrin. I have never been one to enjoy exercise at all, but I soon found my mood was better after walking with her. I was getting some stamina back. The five-minute walks turned to 10 minutes, then 20, then 30. The sunshine on my face (with my SPF, of course) felt SO good. It lifted my spirits and soon I began truly looking forward to walking her two and three times a day. It made Ellie happy too. She was my companion through all of this when bed-ridden, and now she was helping me to heal. I’d always known exercise is key to health in many ways, but it literally had to be forced upon me. Thank goodness for Ellie!
Financial matters had become an issue for our family. We scaled down as much as we could, but I still needed to work though battered and bruised (I’ve been denied disability twice). Luckily, a good friend who owns a restaurant said she could use some help behind the bar, just one day a week. She knew my health challenges and agreed that I could give it a go with either of us having the freedom to say “this isn’t working” at any time. I bartended years ago when my children were very young. Bartending had also allowed me to work a few years while being the primary caregiver to my mom when she battled cancer and had a poor prognosis. So, once again I would return to slingin’ drinks as they say.
Physically it challenged me to stay on my feet for several hours in a fast-paced environment, but the real challenge was mental. Could I remember a drink order for 10 people? Could I remember the drink recipes? “I’ll take a Manhattan, martini, dry with olives, extra dirty, a Titos and tonic, Captain and coke, a glass of chardonnay and a pinot noir, Where’s the bathroom? Oh, and I need three waters with lemon, no ice.” Every 5 minutes, on repeat for 8 hours can test the best of memories. Could I do this without royally screwing it all up? I mean, I was still having trouble remembering my kids’ names at this point. Anyone who has ever worked in a restaurant knows you must be a master of multitasking to stay on track or feel the wrath of a thirsty and hungry guest.
Week by week, I began feeling better about my capabilities and my ability to function. It sounds silly, but just being able to get through a bartending shift would give me a high. After many months of not being able to get out of bed, this work felt like a miracle. I was getting back to myself slowly but surely!
So, while my advice to others recovering from treatment is not get a dog and be a bartender, it IS to get outside and walk. Feel the sun on your face and the strength in your muscles that propel each step. It doesn’t matter how slow you go or that maybe you can only walk for five minutes. You are doing it, and each day you will get a little stronger! Couple some exercise with something that challenges your mind, maybe something you used to do and enjoyed. Pick up your old middle school instrument, get back to your bridge club, or foreign language class and get your mind back in the swing of things. This is your rehab to getting back to your life pre-cancer.
I’m doing well today and feel my mind getting stronger, my muscles rebuilding and my overall health improving. Years ago, I would not have told you that I saw myself in a little townhouse, bartending and walking my dog with contentedness in my heart, but here I am. It is not glamorous, I am not wealthy, and my hair still sucks, but I AM HAPPY. I am GRATEFUL. I am getting STRONGER. I have my sights set on one day returning to my passion of advocating for cancer patients, and my biggest wish is to live to see a cure for CLL.
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