May 16, 2015 at 1:14 am #87963mbachiniModerator
Thanks for updating on the boards, and thanks for being such an inspiration to so many! This trial sounds so promising for so many…..thanks for paving the way. I love following your progress and I love that so many of you in the trial are connecting and supporting one another! There is such strength in numbers and the hope this trial brings is awesome to those with the FGFR mutation.
Love and hugs,
MelindaMay 15, 2015 at 10:40 pm #87962bgeo234Participant
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.May 13, 2015 at 3:52 am #87961iowagirlMember
Patty, I am thrilled for you. Prayers that all continues on the same path….and the last of that tumor is toast.
Julie T.May 13, 2015 at 3:41 am #87960marionsModerator
Patty…..thank you for the update and congratulations on the fantastic response to treatment in this trial: https://clinicaltrials.gov/show/NCT02150967
Everything sounds so good – it is hard to believe that you are fighting this disease, let alone are physically so very active. Thrilling report. Please keep us posted.
Wishing for continued success,
MarionMay 13, 2015 at 1:40 am #11215patty-in-illinoisParticipant
I guess I have some catching up to do. After no treatment for 15 months, my scan showed a new aortal lymph node that was 20mm X 16 mm. Dr. Javle decided it was time to start something to stop this nodule from getting larger OR spreading. We discussed a few options and after much research, I was approved for the BGJ 398 trial. I started the trial in March of 2015 and after two months of being on the drug, having the drug reduced due to high phosphate levels, I had my first scan approximately a week ago. My nodule has shrunk to 13mm X 9 mm. The main tumor is mostly dead but still one spot that remains stable BUT still there. I am hopeful this trial drug will shrink that main live part of the tumor while on this drug. My kidney and liver functions are good. My CA 19-9 is 7.9! I started at 125 mg dosage but after two weeks, I had to go down to 100 mg. Two weeks later and I had to go down again to 75 mg. That is what I am on now. I take a pill once daily for three weeks and then one week off. The diet is a little bit of a lifestyle change when you take the pill. It is a low phosphate diet and that means no nuts, dairy, chocolate, potatoes, no wheat. I try and stay around 600 mg of phosphate a day but in the beginning, I tried my darndest by weighing my food, measuring it, but the dosage was just too high, therefore, we had to keep reducing the milligrams I took a day. I am headed back to MD Anderson next week for blood work and to see Dr. Javle. I pray I am able to keep on the 75 mg. I also take a phosphate binding pill called Sevelemar (Renvella) (with every meal) and that helps the high phosphate bind to your bowels and go out of the body “that route” instead of through the kidneys. Thus, lightening the load on the kidneys hopefully. So far, my kidneys are in good shape as is the liver….well, besides that pesky tumor in the middle of the liver! My liver enzymes were a little high before going on the trial but they have settled down and back into normal range. I feel great…I bike ride, I was in a 5K in Houston in April. I have noticed slight hair loss and maybe a little burn feeling (in the belly) about an hour after I take the trial pill….I just mentally tell myself it is eating at my tumor or nodule!! Thanks be to God I have never had pain with this cancer for the most part. I still have the original hydrocodone the doctor gave me in 2011. There are close to 15 people in the trial at MD Anderson….and two people in the trial at Mass Gen. That’s about all I can update you with about the drug. Oh…YES, you must have the FGFR mutation. I am into my fifth year with this cancer….no surgeries…no resection….just the best doctor and God right beside me!!
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