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Hi! I haven’t posted in so long. I, too, am on the same BGJ398 trial that Patty is in. She has been my “run to” friend when I have a question about what I can eat or what to expect as this goes along since she is a bit ahead of me. Amazing and sweet person!!
I have my first scan this week with Dr. Javle at MD Anderson and am praying for the same positive results that she received.
I just signed in and popped right into clinical trials. Think I’ll browse around in all the areas and see what’s up with everybody.
Hugs and Love!
VickiHey Julie!! I am so very happy for you!! Remember I told you that I had a really good feeling about your upcoming scan. This is an answer to prayer!! xoxoxoxo
Lol, Catherine! I WISH I was going to some exotic place in the world, but I am a country girl brought up in the state of Ga. We also are going to visit Alabama where we will really be out in the sticks, but nothing could be as remote as where we are now in N. Ga in these beautiful Blue Ridge Mountains. A great place to visit the spa and admire nature. A terrible place to be sick like this though I am fine now. Even if I had gone to the hospital Wed night, I’m not sure how confident I would be in a small town hospital and I understand they airlift people to Atlanta if they think they need it. I REALLY didn’t want that.
Marion, I just sent an email to Dr. Javale’s nurse explaining what happened and said I thought it would maybe be a good idea to fly out and have Dr. Javale do another scan to see what’s up. They are usually pretty good about getting back to me.
Kelli and I are going to have a pedicure now to celebrate all this being over!! VickiHi Everyone! Thank you all so much for your helpful comments. Last night, after the vomiting FINALLY stopped, I slept, but when I woke up during the night to get up, my whole midriff/stomach area was so sore I could barely walk and nausea threatened to come back with every step
I feel so sorry for poor Kelli who was here all alone with me and she honestly thought I was going to die. I kinda did, too. But we are up here isolated from everywhere and then it started snowing and so driving was out of the question. We live in south Florida and we were just scared. Kelli would have done it, but I was nervous for her. What if we started sliding down the slope? Anyway, I just weathered it out. I’m not on chemo anymore so where could this be coming from??
Do you think my main bile duct could be starting to close up? I’m not yellow or anything. Guess I’ll just call Dr Javale and fly to Texas for him to ck me out – maybe I need a stent or something. But I want to get my vacation in first! Thank you all for helping Kelli. I so appreciate it. Hugs and Love! VickiThank you both. It seemed to run its course not too long after the initial post. She is able to keep water down now by eating ice chips. Hydration is a priority. I will keep in mind the under the tongue solution if happens again, that sounds like a great idea.
I’m sure mom will be reaching out to y’all later on today or tomorrow herself.
KelliHi Lainy!!
Saw where you have a list of signs to look for from your loved ones!! Would you mind emailing that to me when you have a minute?Hope you are having a quiet, relaxing evening. I’m getting ready for bed.
Thanks so much!!
Vicki
xoxoxoI’m glad I happened upon your post. I am trying to make a decision about going on the BGJ398
clinical trial, but after reading your post, it doesn’t sound promising.Dr. Javle is my doctor, too, at MD Anderson and I think he is wonderful – really on top of his game. I trust him with my life….literally. I am new to this – just had my 2nd round of chemo 3 days ago.
I have already realized that this thing is too overwhelming for me to handle alone so I have turned it over to God. He will work through our doctors and support groups, friends and family.
Everyday I pray for each and every one of you on here. I believe you are going to be just fine. God is holding you and all of us in the palm of His hand.Hi Duke! Ooh yes, I DID run into problems with my local ONC here in Boca Raton. He said that Dr. Javle’s script was not the normal protocol, blah, blah, blah. I then emailed Dr. Javle’s nurse asking for a recommendation of someone in the south Florida area that would work with MD Anderson. They told me one of his colleagues had worked with Dr. Patterson and he was very open to going along with Dr. Javle so I switched doctors. It was a mad rush at the last minute to get in with him before my trip, but I made it happen. Now that I’m on my vacation, I kind of wish that I would have held off on my first chemo treatment till after the trip. We hiked up steep hills today to see waterfalls and usually that would have been a snap, but I found my heart pounding and like this pressure on and off in my chest and throat area. I don’t know what that is all about, but if I would have realized how much of a toll chemo takes on the body, I would have waited. I imagine a lot of these things I feel are in my head.
I tried the flat ginger ale last time, but this time I’ll try it warm like you suggested. Thx
G’night!
VickiHi again! My trip is going just great! No one is sick now, including me. I feel so much better now. It’s too bad that since I feel so good, I have to have another chemo treatment on Thursday and mess up all this energy again. But maybe this treatment won’t produce the same sick feelings as last time. I can really see where walking and maybe doing a few weights could keep me strong in between treatments. It’s so easy to just get lazy and turn into a slug. Can’t have that happen! Lol
Hi from Portland, Oregon, where I am enjoying a wonderful time with my family. Everyone is here and doing fine but my daughter arrived at 1 am…..COUGHING! All of the girls and I are sharing a room and now I am really worried. My chemo was Sept 24th and I think I read that my vulnerability is between the 7th and 10th day. Dang it! If I count Sept 24th as the first day, this would make today my 9th day. She probably caught something on the plane. Anyway, do you think if we just try to not sit next to each other and spray with Lysol , it will be ok? I’m not hugging anyone. Tomorrow is our family photo shoot and the beginning of what is supposed to be an action packed weekend. What are the odds of this happening? Lol. I wore a mask on the plane that I hated cause I couldn’t really breathe. Having cancer is just too much trouble!
Thx for advice. My ONC knows I’m traveling, but maybe I should call to remind him and ask for another form of anti nausea medication just in case this starts up again though I would imagine I’m good to go till the next chemo. Maybe next chemo I won’t be sick at all !
Hi Gavin and Lainy!
Thank you so much for your response. Lainy, you asked where my cancer is – wouldn’t you know, it’s located smack dab in the middle! I know that makes surgery a bit more difficult down the road but Dr. Javie said it is not completely out of the question so I have a lot of hope.
Unfortunately, my 1st wonderful chemo experience didn’t stay wonderful. By the 3rd day at 4:30 am, a wave of nausea came over me and it kept coming and kept coming – pounding headache as a little bonus. I really didn’t want to call my kids AGAIN because it seems their lives are constantly revolving on doing yet something else for Mom, but by 6 pm (when I was pretty sure I was dying – lol) I finally called and here come the troops! Dr wanted me to go to the ER., but when I finally kept down ginger ale, I was able to avoid that, thank heaven. Yesterday was better and today even better, though still a bit weak. No matter what, I’m getting on a plane for Oregon on Tuesday morning for family reunion!! If anyone has an an idea how I can get a big surge of energy, I could use it cause we have a whole week of fun planned and I don’t want to miss out !
Btw, even before chemo began, my thick hair started coming out by the handfuls – what’s up with that?? Thx for listening!Hi – my name is Vicki and I was diagnosed with CHolangiocarcinoma ( I can’t even pronounce it yet) on July 18th 2014. This is my first time on this site and am so grateful to have found all of you so I don’t feel so alone. Terrified would be the best word to describe how I’ve felt since first hearing this news. I have had no treatment yet but am scheduled for a consultation at Moffitt in Tampa, Fl., then on to MD Anderson in Houston on Sept. 9th. I have no idea what awaits me in Houston but I am trying to be strong and brave and just face it head on! Right now I feel fine except for getting tired easily and this weird pain that keeps happening in my right rib cage. No idea what that is. I am very blessed that I have many people praying for me and I am expecting a miracle. Thanks for listening..
