You are not logged in. Please login or register.
La fundación de colangiocarcinoma (CCF) ahora ofrece servicios de traducción en Español.
Por favor publique sus preguntas en Español y un intérprete le va responder.
Due to recent news about new cancer treatments, CCF is gathering information about your experience with genetic testing of your tumor. Whether you have or have not
had any genetic testing it is important to answer the questions to help us make progress in cancer research.
Take the Survey
Search options (Page 1 of 3)
Posts found: 1 to 25 of 53
I haven't been on in a while so I am checking in and letting you know about my latest scan. I had my quarterly PET scan after being on Folfox.
Reduction of FGD uptake in lesions in liver
Volume of omental metastasis has been reduced, slightly lower uptake
No new metastasis!
So yippee! Finally a positive scan after 6 months of progression. I will continue on Folfox.
Great new Kris. Keep it up!
I had 20 cycles of gem/cis off and on over a 1-1/2 year period. Toward the end I felt like my ears were stopped up all the time. I had to get off gem/cis because of neuropathy in my feet but the good news is my ears cleared up and I felt like my hearing was restored. I also had my hearing checked over a 3 month period and did not have hearing loss, but it sure seemed like I did at the time.
I never had a problem with my platelets but the nausea and fatigue was pretty bad during the on week.
Dr. Javle's office emailed me and said there were no openings in the clinical trial at this time and to start on Folfox and we would discuss it again when I go back in March.
I talked to the clinical trial department and they said there are other options if you don't have insurance but I would need to have a consultation with the clinical trial doctor to find out specifics. I am going to talk to them about having the consultation before my next appointment in March.
Thanks Kris and Marion! I will call them today.
Kris, I guess the winter storm is going to prevent you from going to see the tree. Sorry about that. Stay warm!
Kris, the way I understand our insurance is covering clinical trials is an option and we opted not to cover clinical trials on our plan. We are self insured so I don't know if that makes a difference. We have great insurance so I just assumed they were covered and had never asked until now.
I found out my insurance does not cover clinical trials. MDA said I cannot get into the trial without insurance. Is this common or does it depend on the trial, drug company and facility? Are there foundations or other resources that pay for clinical trials if you do not have insurance?
Happy New Year everyone and a big THANK YOU to all the moderators for all that you do!
I haven't posted in a while as the FOLFIRI + Tarceva has been rough. The really bad news is that it didn't work. I had my quarterly PET scan this week and the news wasn't good. The cancer in the liver is still relatively stable but it has now spread to the omentum. The findings say interval progression of peritoneal carcinomatosis.
Dr. Javle has suggested we try to get me in the Pazopanib + Trametinib trial. They are checking on availability. After reading Regina's posts, I am not feeling too good about that. If I can't get in the trial in January I will go on 5FU and Oxaliplatin. The 5FU has caused horrible heartburn and mouth problems and I know Oxaliplatin is no picnic either so I can't say I am looking forward to that either. On the other hand, if either of these options work I can get through it. However, I am a bit annoyed that I lost my hair for nothing!
As you can tell I am a little depressed but I am going to try to not let it ruin my holidays. I am going to my sister and her husbands ranch Monday for a week. My 1 year old great niece and 3 year old great nephew will be there later in the week and playing with them is a great distraction.
Hope everyone has a Merry Christmas.
Take care of yourself and I hope you feel better soon.
Glad to hear it went well!
Thanks Lainy! I have an appointment Thursday with my local oncologist to discuss the new plan. I will probably start in a couple of weeks.
I just got home from Houston for my quarterly PET scan at MDA and my results weren't great. The Xeloda/Gemzar is not working and there has been some progression. I will be starting FOLFIRI and be adding Tarceva a little later. I am a little freaked out about this chemo combination and would like to hear from others about your experience with these drugs.
Can't wait until Monday to read your good news!
Loved the poem! I'm sorry the gem/cis didn't work for you. I've never been on oxaliplatin but I have been on Gemzar/ Xeloda since April and have not had any bad side effects from Xeloda. I was worried about that as well and have been vigilant about keeping lotion on my hands and feet. I keep lotion and socks on my feet most of the time. I also rinse my mouth with baking soda and water 2 to 3 times a day and drink lots of water. I go back and forth between constipation and loose stools depending on how many anti- nausea pills I take for the Gemzar and an occasional pain pill, so no bad diarrhea.
Good luck! I hope the new combination works for you.
I am so sorry about the baby.
Maybe it is because so many of their patients are from out of town, but MD Anderson has a great procedure for scans. I have my scan one day and the next day I meet with the doctor and get to see the scan and go over the results. I can't imagine having to wait!
Welcome to our site. You will receive great support from this group and I hope you are able to meet others in your area.
You mentioned you had a stent. The alkaline phosphatase spike could be related to your stent. How is your bilirubin? An increase in these numbers sometimes indicate it is time to exchange (plastic) or clean out (metal) stents.
Good luck with chemo and let is know how you are doing.
I was diagnosed 2 years ago with stage 4 ICC with mets to the lungs and ovaries. i will never be able to have surgery because of the location of the tumor. I was on gem/cis, radiation and xeloda and am currently on gemzar and xeloda. Chemo has kept the cancer in my liver and lungs stable. The lungs have never been an issue and have remained unchanged for these 2 years. The ovaries were not responding to chemo so I had a complete hysterectomy in February and everything has remained stable since then.
No two ways about it, chemo sucks, and the fatigue can be bad, but I still work part time and live a normal life. Like Kris, I'm not sick, I just have cancer! My doctor says to think of it as a chronic disease and not terminal cancer. Of course that is easier said than done but I try to have that attitude.
So be positive and I hope your husband does great on chemo.
I am so glad your sister got good news and hoping it continues!
I am so thrilled to hear how well you are doing. That's amazing! Good luck with the rest of your recovery.
I went to MDA this week and had a PET scan. This is the first one I have had since changing from gem/cis to gem/xeloda and the cancer is still stable. My CA19-9 jumped up to 88 which freaked me out, but all my other numbers look good and since the scan is showing stable the doctor said not to worry about it. Of course that is easier said than done but I am very happy with stable.
That's wonderful news Lisa. So happy for you!
That's great Kris. Congrats!
My heart is also breaking for you and your family. My thoughts and prayers are with you at this difficult time.
My oncologist at MDA did mention clinical trials at my first appointment, but it was presented as something we might try if standard treatment did not work. I would consider a clinical trial.
Posts found: 1 to 25 of 53