October 4, 2016 at 7:43 pm #87959
Eirie….how are you feeling? What are the latest results?
MarionAugust 27, 2016 at 3:16 pm #87992eirieParticipant
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.April 1, 2016 at 9:18 pm #87991katrinaParticipant
And another late March CT Scan. My last scan at MDAnderson showed mild improvement. Course, the difference between mild — and having more metastases is a long, long way so I am grateful. Very grateful. I connected with the Facebook’s BGJ398 posts. I see a few new and many former trial members. It covers a bit more re: Did you get this side effect? That’s the mystery when on a trial. They don’t tell you about them in advance of course, but it can be hard to know what to blame it on sometimes. Having it affect your thyroid counts has been a relatively recent thing. So check those counts with your home doctor until and unless the manufacturer has enough evidence to call for its testing.February 17, 2016 at 7:11 pm #87990bgeo234Participant
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.February 2, 2016 at 8:41 pm #87989
Dear Shelley, good news to read that your numbers are heading in the right direction! Sorry about the neuropathy and sure hope it gets better for you. In the meantime I just know you can be the Little Engine that Could and keep on chugging up that hill! I know you can, I know you can!!!!February 2, 2016 at 6:35 pm #87988shelleyMember
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,
ShelleyFebruary 2, 2016 at 1:53 am #87987
Katrina…Patty had mentioned a Facebook site populated with others on this trial. Have you been able to connect with any of their members?
You may want to ask to have CT scan and current report be sent to Dr. Rohan Jeyarajeh, your previous surgeon. Perhaps you may want to gather your records and consult with an additional surgeon for review of your case. Being that you are treated at MD Anderson, you could start there, but other centers have excellent surgeons as well i.e. Columbia University, Mayo, Sloan Kettering, John Hopkins, etc.
MarionFebruary 2, 2016 at 1:09 am #87982katrinaParticipant
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.January 13, 2016 at 11:10 am #87986middlesister1Moderator
Welcome to our group! Looking forward to and keeping fingers crossed for great scan results.
CatherineJanuary 12, 2016 at 6:12 am #87985
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.
MarionJanuary 11, 2016 at 7:52 pm #87984
Hello Shelley and welcome to our remarkable family and the best place to be for CC support. Wishing you the very best with your treatment! Can you tell us what kind of CC you have and where you are being treated? We are such a nosy bunch! LOL
Just a suggestion for you……can you repost this under INTRODUCTIONS? I don’t want to see it get lost along the way. Below is a site you may find helpful and PLEASE keep us posted as we truly care.January 11, 2016 at 7:44 pm #87983shelleyMember
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.
ShelleyOctober 6, 2015 at 11:43 pm #87981mbachiniModerator
Congratulations Katrina on the good news, shrinkage and stable, such great words to hear! Keep up the good work, and as one who has lost her hair 3 different times, don’t let it get to you, I agree with Lainy, a nice scarf or hat makes a huge difference. If you are just thinning….check into some clip in hair extensions…I just met a gal who had lost her hair and it was coming in patchy so she bought some hair extensions from Sally’s Beauty supply, clipped them in and put on a hat and WOW, she looked awesome! Take care!
MelindaOctober 6, 2015 at 9:13 pm #87980gavinModerator
Thanks for the update Katrina. Stable and shrinkage, we so like that!! Fingers are crossed for more news like that please!
GavinOctober 5, 2015 at 8:01 pm #87979
Dear Katrina, way to go, girl! Keep on shrinking, it is a good thing! As for thinning hair, not sure there is much to be done but since winter is around the corner I would say a cute hair piece or some cute winter caps/hats. Since the treatment is working well for you I would revel in that and let the hair go where it will. MDA here in Phoenix has an amazing gift shop full of hair pieces and other items for cancer patients and everything is discounted. Continued great success!
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