Patient Story Feature: The Advocacy (and Research) That Saved My Life by Melinda Bachini

Patient Story Feature: The Advocacy (and Research) That Saved My Life by Melinda Bachini

Cholangiocarcinoma FoundationAfter brushing off the symptoms of shoulder pain, fatigue, and GI issues as part of my career as a paramedic, I eventually scheduled an appointment with my primary care physician in 2009 when I suspected that I had gallbladder stones. The ultrasound revealed that I had a grapefruit-sized tumor on my liver. Despite having no risk factors or family history of liver disease, the liver resection, which removed two-thirds of my liver, confirmed that I had intrahepatic cholangiocarcinoma. Three months after the resection, my cancer came back, and I knew that with the limited treatment options for this disease, the only way to beat it was by participating in a clinical trial, which I credit the persistence of my oncologist for finding. However, because my health insurance did not cover the standard of care that went into participating in the clinical trial, I was only left with the option of undergoing palliative treatment, causing tinnitus and neuropathy amongst other side effects, which drastically lowered my quality of life. The barrier that I faced with the lack of coverage from my health insurance paved my path to advocacy. I, along with other patients from Montana, traveled to the Capitol and shared our stories. This led to the passing of a law that ensured that health insurance companies in Montana would have to cover the costs for cancer patients who wanted to participate in clinical trials. While the results of this law were not quick enough for my benefit, I knew that it would at least help others down the road. Fortunately, through my own research, I came across a federally funded clinical trial that was being conducted by the National Cancer Institute; even though this clinical trial was not specific to cholangiocarcinoma, I was adamant about attempting to enroll in it. Soon enough, I became the ninth person to enter into the trial, the first cholangiocarcinoma patient in the trial, and the first to have a response. This clinical trial and the perpetual support from my husband and children are the reasons why I am here, twelve years later. 

My cancer journey has not only changed my life, but my family’s – their perception on life, what is important, and their ability to value time. My children have become involved in advocacy, which bleeds into the family whether they want it or not. Through it all, I learned that it is important to be your own advocate. This is especially true for those who do not have access to care – to health experts or to clinical trials – due to financial or geographic barriers. Everyone deserves equal access, but change is a process; nothing moves fast in the cancer world, and I wish we could make things move faster. However, there is so much more hope than there was twelve years ago – which is why we must not lose hope because there is a lot of research being done. You don’t realize how big the cancer world is until you’re stuck right in the middle of it, which is why it is important to connect with advocacy organizations, so you’re not alone. Through my experience in advocacy, I learned that every patient just wants to talk to someone else who has been in his/her shoes. If you tell your story, you might make a difference.

 

Melinda Bachini

Billings, MT, USA

Bile Duct/Liver Cancer (2009 – Present)

Patient Story Feature: The Advocacy (and Research) That Saved My Life by Melinda Bachini

Patient Story Feature: The Ups and Downs of a Liver Cancer Journey by Anthony Villiotti

 

Anthony Villiotti HeadshotSt. Patrick’s Day seems to be a recurring theme throughout my liver cancer journey: I was diagnosed with hepatocellular carcinoma on March 17, 2017 and exactly one year later, I received the phone call telling me that I was getting a new liver. Before my battle with liver cancer, I had struggled with weight problems, diabetes, NASH, and cirrhosis. Within months after my liver cancer diagnosis, I received stereotactic body radiation therapy, which successfully stopped the growth of the tumor as I waited for a liver transplant. The wait was filled with emotional ups and downs, which was the worst part of the whole ordeal. I went from being optimistic for a new liver one day to writing my obituary the next. My liver was deteriorating. Hepatic encephalopathy and ascites were some of the many symptoms I experienced. After nine months of being on the transplant list, I finally received a liver transplant. Managing my health post-transplant has had its fair share of challenges: anti-rejection medication has made it more difficult to control my diabetes and weight, my kidneys have been damaged, and I still worry about the recurrence of NASH. So, having a successful transplant is half the battle, while keeping up with doctors’ recommendations is equally important.

A transplant can be a lifesaver, but it is not a get out of jail free card; after all, it carries ramifications that highlight the importance of early diagnosis and prevention as you are much better off not having to go through this obstacle in life. Unfortunately, early diagnosis and prevention is hampered by a lack of awareness around liver health. We grow up not knowing much about our liver. This further drives the stigma against having liver cancer. When my wife shared my liver cancer diagnosis with others, people often made assumptions about my alcohol consumption patterns. I was not destined to get liver cancer; rather, it was the end result of a combination of factors, including not being diagnosed early enough to take actions to prevent it. This is why as President of NASH-kNOWledge, I made it my and my organization’s mission to increase public awareness of non-alcoholic liver disease.

Anthony Villiotti

Springfield, Illinois, USA

Type II Diabetes (1985 – Present); NASH (2014 – 2018); Cirrhosis (2015-2018); Liver Cancer (2017 – 2018)

Patient Story Feature: A normal day in my life with PBC by Bob Tyler

Patient Story Feature: A normal day in my life with PBC by Bob Tyler

 

If you’ve ever seen the movie Groundhog Day, that’s probably the best example I can give about my experience with PBC. I know each and every day what my day will be like. Waking up is tedious due to the joints just aching because of no movement during the night. Feeling totally “unrested” even with 6 to 7 hours of sleep. Slowly making my way down the steps each morning to start my day knowing that my day is going to be mind over matter getting through.

I’m a more upbeat person with the attitude I’m here to live, not just survive. I truly enjoy life and the people I have in it, so no matter how I feel, I’m going to enjoy my day and hopefully hide as much of the “exhaustion and pain” I have from the people I’m around. Although I still work, I’m fortunate to mostly do it from home. But I take the day on as though I will be out and about by shaving, showering, and getting dressed for work and go in my home office and get on the phone and computer to start my work day.

Usually late mornings I need to take a break and catch a bit of a nap in my lounge chair, although my work is not physical, it still seems to wear me down. It’s  not uncommon for these naps during both day and late afternoon, the fatigue and pain throughout my body is a daily occurrence I just can’t seem to overcome. After work, we usually have a game to attend for one of the grandkids, which although really tough to motivate my body and mind to do, it’s the bright spot of my day watching them and having them know I’m there for them. Then off to home for dinner, a little TV, and off to bed by 10 p.m.

I need you to know one thing though, as bad as I think I have it, I’m blessed. I have a phenomenal support team: from my family, my Facebook support group, the PBC Foundation, and most recently the Global Liver Institute. As rare as this disease is, we have people fighting for us daily and I’m forever grateful for that. I also realize that with my daily struggles, we have medicine that slows this progression down that allows me to live the best daily life I can. Don’t misunderstand me, it’s hard on a daily basis, real hard especially knowing this is now my life. But reaching out for support and education and advocating for myself with my doctors allows me to do and be the best I can in my control.

 

 

 

 

 

 

 

Bob Tyler
PBC/AIH patient of 9 years