Novartis BGJ 398 Clinical Trial

I’m really curious to know how others are doing and how long you are being able to stay on the drug. I am just finishing up eight cycles. Each cycle my dosage has been reduced to deal with a slew of side effects. In the last two months I’ve been doing one week on one week off with a 75 mg dosage. The side effects have been much more limited and I feel mostly like a normal person, which is awesome. But I’ve been concerned whether I’m getting enough of the drug. I just got my CT results of my liver tumor is stable at about 2 cm but there is growth inthe many little nodules in my lungs. They are still small – biggest is 9mm having grown from 6 mm, but there are over 20 of them. I’ll see my doctor on Monday to see what is next. I wish I had a clue how long to expect that this job will work for me. But I’m so thankful that I’ve been doing pretty well, so I’m not complaining.

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.

Thanks for the welcome!

I will try and repost my first post to Introductions (if I can figure out how.) I got my first scans back and had an overall 23% reduction of tumors. I have many, especially in my lungs, and it looks like they are only going to report on three of them. The one in my liver went from 9.2 cm x 4.5 cm to 7.5 x 3.6 cm. Left lung from 2.2 x 1.4 to 1.01 x 1.3. I am very happy (I would have been ecstatic with 100%) with this result and look forward to more improvement.

I have had side effects, the neuropathy in my arms has been the hardest. I got to the point I couldn’t put on or pull off a shirt. The pain let up for a few days on the break but I am 5 days into the third month and it is back. Last week the doctor had considered lowering my dose but so far I am still at 125 mg. I’m hoping I can hold on at this dose until I see more improvement.

I hope you all are well,

Shelley

Hi all. Surprised we don’t have more BGJ 398 people chiming in here. I would love to know how the rest of you are doing that began before I did (August 2015 I believe).

My 3rd CT results are in. This time, my results seem to be one smaller, one stable. Both of them are under 1 cm. Yea. I must say I find MDA’s CT reports are rather confusing as they are talking about one new one in the last few months, they can’t see the original one where the bile duct stent is, and the one at the collarbone area.

Anyway, I do wonder how folks are doing when they started out with larger tumors on this Trial.

As a volunteer for a few survivor groups for one on one phone conversatn for someone having been there, done that — or is around the same age group — I find myself saddened that many of them are still being told to start chemo, “make your final plans,” but no mention of a surgical option or opinion. It isn’t discussed nor are the scans explained. I struggle to find the right words to ask if they know the details and when they don’t, to get them and check 2nd opinions to be sure that a more experienced surgeon can’t tackle it now or follow you to see if it becomes surgical with some treatment. I had three calls like that in one day.

Shelley….thanks for chiming in on this clinical trial. Wishing and hoping for your scan results to equal those of Katrina and Patty, the 25th is not too far off.
Hugs,
Marion

Hello Everyone,

I just started BGJ 398 six weeks ago and I am so happy that I found this discussion board. So far I have had the loss of taste, hair thinning and high phosphate levels that have been mentioned before. I’ll have my first scans on January 25th and I am hoping for the great results some of you have had. Thank you so much for posting your results. It makes it much easier for me to know how it is going for the rest of you.

I am in Atlanta and there are two of us on this study. I have not met the other person yet.

Shelley

Thanks for the update Katrina. Stable and shrinkage, we so like that!! Fingers are crossed for more news like that please!

Hugs,

Gavin