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Melinda’s Story

My story began December 1st, 2009 when I was first diagnosed with a rare bile duct cancer called cholangiocarcinoma.

In November, 2009, after experiencing some indigestion and thinking maybe I might have gallstones, my doc ordered an ultrasound that discovered a grapefruit size tumor in my liver.

For the next two months things seemed to be a whirlwind of different tests, doctors, and procedures.  Then on December 1, 2009, I received the dreaded phone call with those dreaded words, "I am so sorry, it is cancer".  At first they couldn't distinguish what the primary cancer was, after several pathology reports, I was eventually diagnosed with Intrahepatic Cholangiocarcinoma, a very rare bile duct cancer with no known treatment.

I spent Christmas in the hospital having a liver resection. They took 2/3rds of my liver out and they felt confident that they had removed all the tumor with good margins. Unfortunately, at my six week checkup, some spots showed up in my lungs and another nightmare had begun.

I was now labeled Stage 4 metastatic Cholangiocarcinoma. The only option for treatment was palliative care, using standard of care chemo drugs. I began the merry-go-round of chemotherapy and all the fun that goes along with it!  Knowing all along that this was not going to cure my cancer.

In the beginning my docs wanted to try a clinical trial, but my insurance would not pay as it was experimental. I struggled with the insurance companies to cover alternative treatments, clinical trials, or anything that may be new. I found myself working with the Cancer Support Community out of Bozeman, MT and a group of very amazing people. They where in the process of lobbying for change. This change was that insurance companies must cover clinical trials. I found myself going with the group to the State Capital on several different occasions to speak before the different committees. I wanted them to understand how frustrating it is dealing with insurance companies and having them tell me what I can and can not do with my own body for treatment. It took some time and finally it was passed into law that Montana would mandate Insurance Companies to cover clinical trials.
 Thus began my relationship with the Cancer Support Community from Bozeman, MT and a great group of people that came together to fight for this bill that after 2 years was finally passed into law, stating that insurance companies had to pay for the standard of care for cancer patients who chose to enter into a clinical trial to find treatment. One of my proudest moments and one of the most important things I have ever done.

After many attempts at trying chemotherapy I found myself not wanting to spend the rest of the life I had left using a chemo that would not cure me but had already caused so much damage. Chemo was toxic and it was not holding against this rapid growing cancer within me. I miraculously happened upon the NIH site looking for a clinical trial. I wanted something new, something that would make history. I know this is asking a lot but after becoming frustrated with being told it may take 10-15 years for "a" new drug to be approved, I needed and wanted something now.

While all of the lobbying was going on I went back to my site in search of a clinical trial that would fit my type of cancer. One screen popped up a new clinical trial that fit my description! I was excited to learn something had opened up. I immediately called to find out more details and to see what I needed to do to enter into the trial. I have always felt that this was a "God" thing, they way I found it and how it all took place....I believe in the power of prayer and I believe in miracles! In March of 2012, two years and four months after diagnosis, I entered into this trial at the National Institute of Health, The National Cancer Institute in Bethesda, Maryland.

My husband, Steve, and I headed out to the east coast and began the process. Fortunately, I have my brother Danny and his family who live real close in Ashburn, VA and I had a childhood friend who lived close also for the first year of trial. They both were and have been so amazingly helpful, selfless, kind, generous and giving to me that I could never express my gratitude to them or come close to repayment.

In March of 2012 the removed four tumors from my left lung. They then took the TIL, (tumor infiltrating lymphocytes) from the tumors, grew them in the lab for about a month and then in April, Steve and I returned to NIH for treatment. The first week, I was given 2 strong chemo drugs to deplete my immune system and prepare it for receiving the new cells. The second week, I received 42.6 billion of these cells into my body in hopes they would attack and kill the cancer. The third and fourth week is recovering. Giving my body the chance to rebuild my depleted immune system, red blood cells and platelets. It was a grueling process.....but I have always said it was worth it.

For the first six months my tumors shrank, the next six months they stayed the same and after that they slowly started to grow again.

What I was given was about a year and a half of amazing life....good quality life. I am grateful and blessed. I feel like a miracle.......Now, we are at the point of starting this process all over with higher hopes. The researchers feel strongly about repeating this treatment. It seems they have honed in on my cells and found some super fighters and want to see how they will work.

This is where I will start this site....from the beginning of round 2........






Latest Journal Update

Amazing research!

Where does the time go? I can't believe I haven't posted on here since February. I returned back to NIH in April and continued to have shrinkage in my tumors! Thank you God! It was then that the docs told me they would be publishing an article in Science journal about my research. I thought that was so cool! Little did I know that this week, when the article was published, my phone would be ringing off the hook! Never in a million years did I imagine phone calls from the New York Times or Wall Street Journal, and I about pooped my pants when NBC called!! :)

I am so happy and proud to be a part of this research! First of all...I have and will ALWAYS give God the Glory! I know that it is his doing that I am where I am, and I also know that it has been the power of prayer that has got me to this point. I believe with all my heart that these brilliant doctors and scientists are an answer to prayer!

I hope you all got the chance to read the articles, if not just google my name and they all come up...I am too technology challenged to know how to post links....sorry!

Please pray that this media attention to this research will bring about great changes to help millions of others and continue to give cancer fighters HOPE!

Thanks so much for all your thoughts and prayers...love you all....Melinda

 

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Comentarios

7 Comentarios

Kim Thompson
By Kim Thompson
Melinda-
I came across your story first on the cholangiocarcinoma.org website discussion board and then read a NY times article about the clinical trial you are involved in. Your story is almost exactly what my mother has gone through is and going through. After we were given yet more bad news just on 6/2 that my mother tumors had not shrunk but in fact grew her cancer team started looking for clinical trials and found zero. Thank GOD we came across the discussion boards and read your story. My father contacted Dr. Rosenberg immediately and we were able to get her in this trial! She hasn't begun in yet but I wanted you to know that without you sharing your story, we would have never been able to find this trial for her. My parents actually live in Maryland so it's truly a godsend.
Thank YOU from the bottom of my heart and my families for sharing your journey. I know that a great support system is vital to any time of cancer diagnosis. I am providing my email so if you wish to contact me, I believe that my mother would gain great insight from you as to what she is about to go through moving forward . I can be reached at elvchance1@gmail.com or via phone 843.568.5030. GOD BLESS YOU
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Melinda Bachini
By Melinda Bachini
The clinical trial I am involved in is from the National Institute of Health in Bethesda, Maryland. You can visit their site at www.nih.gov there is a wealth of information available. My specific trial is listed at the following link:

http://www.clinicaltrials.gov/ct2/show/NCT01174121

Contact information is below

Contact: June Kryk, R.N. (301) 451-1929 ncisbirc@mail.nih.gov
Contact: Steven A Rosenberg, M.D. (301) 496-4164 sar@mail.nih.gov


Locations

United States, Maryland
National Institutes of Health Clinical Center, 9000 Rockville Pike Recruiting
Bethesda, Maryland, United States, 20892
Contact: For more information at the NIH Clinical Center contact NCI/Surgery Branch Recruitment Center 866-820-4505 ncisbirc@mail.nih.gov

I hope this helps you. Please let me know if you have anymore questions. I am very happy to help.....all my best to you...Melinda
Angela Elliott
By Angie
My mom has recently been diagnoised with Cholangiocarcinoma. The ct scan she had 2 weeks ago shows that it has spread from her bile ducts into her liver. She started Chemo but ended up in the hospital for a week with nausea.
I came across your story through the Cholangiocarcinoma Foundation's website, so I printed it off for my mom to take to her Oncology appt. Her dr. at the Alberta Cross Cancer Institute asked my mom if there was a consent form or waiver for the trial, as well as a list of the drugs being used? Can you please provide me with the contact person for the trial you are on, so I can get more information on it? There are no trials in Alberta on this type of cancer, so any information you could provide me would be wonderful. Thanks so much :)
Angie
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Mark Grbic
By Mark Grbic
Awesome job, you continue to be an inspiration. Keep us updated! My dad is feeling better as well and we're all riding the positive wave. Bile duct cancer needs more attention. Thanks!
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jen klinzman
By jen klinzman
I am following you and i will contact you as soon as i have more time...as my mother was just diagnosed with bile duct cancer a few weeks ago...and i want to find hope for her so i am hoping she can maybe get on the clinical as you did...I need my mom for many many more years...god bless you melinda
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Sara Denn
By Sara Denn
Wow!! I didn't know about the Wall street Journal and NBC! Cholangiocarcinoma needs all the exposure it can get... as does this wonderful research. Go for it and bask in that limelight.... you are a shining inspiration to so many.
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Penny Elgas
By Penny Elgas of Springfield, VA
Oh Melinda! I am praising God with you! Thank you for being such a fervent witness to what God can do. Try to enjoy the media circus. Even this is a part of His great plan. May it help many others who are also going through the fire. Blessings and Love, Penny
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