bgeo234
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The good news is that I’m still on the TAS120 trial. I have been considered stable after CT scans every 6 weeks. There has been reduction in the size of my liver tumors and some of my lung nodules and some minor growth, thus, the stable status.
My mouth has improved and I’m able to eat more things that are low in phosphates. My latest challenge is fatigue. That too is getting better. I try to do a few things every day and that makes a world of difference. I do something and take and a rest and then do something else, etc. Some days I just rest and don’t do much more than make my breakfast and lunch. I believe there may be another person on this trial from Mass General now.
I have another scan next Tuesday. One concern is that my CA19-9 is increasing, yet the scans show shrinkage of tumors. So there is some uncertainty there.
Since I was told in May, 2014 that I only had about 1 year, it’s a wonderful thing to say that I continue to lead a pain free life. Although there are side effects from the trial drugs, I’m still able to do a lot of things, just in moderation. There are many things I can’t do, but I’d been doing those things for years and years and quite honestly, the break is nice.
My team at MGH already has two other trials in mind for me if and when this trial stops working for me, so I always have hope.I have not been on here in a long time. I’m way overdue for updating my experience on BGJ398. I started the trial in May 2015. I had 50% reduction of my tumors! This was an awesome drug and I so wished I could stay on it. Unfortunately, I had a small new growth in October 2015 and that was the end of the trial for me. Many people have done very well on this drug. I did have side effects and early on ended up with thrush. I had mouth sores, I used everything doctors prescribed and/or recommended and eventually they were under control. I found a few things to help me also. Orajel makes a product for mouth sores that worked very well. My hair thinned over the first few months and I eventually had my hairdresser shave it off. I didn’t want to have a comb over!!! I wore scarfs and a wig for several months. Once I was off the trial, my hair began to grow back. My nails were all discolored and at times painful. I eventually started taking 10,000 mil of Bioten and that really helped with my nails and my hair growth also. I was a participant of Patty’s BGJ398 Facebook group and did a lot of posting there.
I’m so thankful for this trial as I believe it’s given me more time since I had so much overall shrinkage. Even with the new growth, I don’t have as much cancer as I did when I started the trial, which was after 10 months of gem/cis.
I am now on a new trial TAS120, Phase 1 for Multiple Myeloma and Solid Tumors with FGFR2 and Abnormalites. I’ll try to start a new thread on that subject.I’m one of the two people in the BGJ398 trial at Mass General. I began the trial 5/7/15. I will be going to Mass General once a week for two months, then will reduce to once a month. When I went back Thursday 5/14/15 my phosphate level was elevated from my initial phosphate level so the binder was increased by 400 mg. I too am feeling very good and it’s a wonderful thing after 10 months on gemz/cispl. Unfortunately, while I was off chemo for 6 weeks waiting to get on the trial a couple of new lesions appeared on my liver. I’m hoping this drug takes care of them and shrinks my other tumors – a large one on my liver and nodules on my lungs. It seems that the phosphate level is the biggest challenge with this drug. Hoping the best for you Patty when you go back next week. I’ll have my first scan the last week of June.
Melinda,
First, congratulations on your 5 year mark. Awesome that the immunotherapy trial worked for you.
My ENT appointment resulted in a hearing test. I have high frequency hearing loss. So yes, some nerve damage. It’s rare when I can’t hear someone in a crowd, but voices are definitely muffled in a crowd. I’ll have a follow-up hearing test in 6 months or sooner if things change. I’ll be having a CT scan the end of January to see how the tumors are doing. I’ll continue on the reduced cisplatin and full gemcitibane until then. We’ll assess at the time to see if treatment changes are necessary.
Thanks again,
Bea
Lainey, Duke, and Melinda,
Thanks for your responses to my post.
I started with one oncologist who was gloom and doom and fortunately got into Mass General by the end of that week and had my first chemo the next day. Since the treatment was pretty standard, my doctor at Mass General suggested I get it closer to home. He recommended an oncologist at the Helen&Harry Gray Cancer Center at Hartford Hospital in Hartford, CT. So my first two treatments were at Mass General and then in Hartford where I am continuing my treatment. We visit Mass General after I get a scan for that doctor’s input. My oncologist in Hartford consults with my oncologist at Mass General. We’ve got the best medical team we could have with top doctors. Both oncologists are very knowledgeable about CCA. My oncologist at Mass General is the director of the gastrointestinal Cancer unit. I have intrahepatic choangeliocarcinoma.
I’m going to an ENT this week because my ears get blocked when I’m around a crowd of people. Not sure why this happens and can’t wait to find out.
This is my life Duke and that’s exactly what I’ve done, demanded the best. I’m a young 60 year old with a lot of living left to do.
Thank you all for your kind words of encouragement.Bea G.
BEA Strong – BEAlieve
