June 18, 2013 at 9:45 pm #72932marionsModerator
SweetGreen….your posting contains great news, congratulations. Please keep us posted as to what regimen Jeff will be on next and enjoy, enjoy, the time off from it all.
MarionJune 18, 2013 at 7:38 pm #72931sweetgreenMember
Thank you all for the advice! We went to the clinic today and when the onc saw me, I could tell he knew we had business to attend to! ;o) So, he let Jeff order another CA 19-9 to see if the higher numbers were a fluke, and he gets to take 3 weeks off. Because Jeff is so healthy and showing absolutely no issues, and his CT scans have never shown a change, he is confident that he will maintain for a while longer. Jeff gets to have a new CT scan next week, and then he’ll determine what new chemo cocktail to give him. The Abraxane worked well for 8 months, but with his numbers inching up we want to stay ahead of the curve and any explosion of the disease into other areas of his body. So, it’s time to switch. Jeff never progressed on Gem-Carbo (he had toxicity effects, platelets were too low), so he’s thinking about putting him back on Gem-Cis with the Cis spread out over 2 doses. OR, he said he’s also had really good results with Irinotecan on its own or with Gemzar, and he’s going to look to see if there is a combo that combines those with Cisplatin. He also said that since Jeff is doing so great, he would never advise him to go into a Phase 1 trial. He had thought the researcher would have some Phase 2 trials, but at this point we don’t need to look into that. Huge misunderstanding. What a relief!June 17, 2013 at 11:45 pm #72930RandiParticipant
Sorry for the turn of events. Let me chime in and add my voice to the chorus suggesting second (third) opinions. This is so important.
Keep us updated.
-Randi-June 17, 2013 at 6:55 pm #72929gavinModerator
I am sorry to hear this news. Here are some links on clinical trials that may be of interest to you –
Here is a webinar and some trials that are running right now –
Some other links –
I do so agree with what Lainy and Kris see about seeking further opinions on treatment options, have you and your husband thought about doing that? Please let us know how things go for your husband.
My best wishes to you both,
GavinJune 17, 2013 at 6:16 pm #72928kris00jParticipant
Bridget: yes, in phase 1 trials we are doing this for science and others, as well as ourselves. I am stage IV but otherwise healthy, and am in a phase 1 trial that so far is keeping me stable. I like that word! It is an inhibitor trial.
It’s scary to decide to do this, but has been worth it to me. Mainly because its doing what it’s supposed to do, with few side effects.
Please get a second opinion! If you can, get to major hospitals where they deal with cc. Many oncs will allow you to work with a local onc for most treatment, and you will only have to travel for the “big” appointments.
Our Tiff is on GTX which is gem/Xeloda and added Taxotere. I believe the addition of Taxotere made a big difference in her treatments.June 17, 2013 at 4:58 pm #72927lainyParticipant
Hi Bridget, I am very sorry about this turn in the road. I don’t know about trials but someone on here will, however, I would also suggest a 2nd opinion. You know we are big believers in 2nd and 3rd opinions. If you decide to follow this route you will need to collect copies of all your husband’s LABS, Scans and tests and send them to the ONC you choose. Also make sure that you pick someone who has a lot of experience with CC. Wishing you the very best!June 17, 2013 at 4:11 pm #8510sweetgreenMember
Hello again — My husband is 42 and has extra hepatic CCA. He has gone through 3 different types of chemo, and his doctor is now recommending that he talk with a researcher who does phase 1 trials. I talked to someone there, and they basically said in phase 1 we are doing more for science than ourselves. And he said it will be time consuming and costly, and we’d have to travel all the way to Boston several days a week. That’s not an option for us. Are there other treatments that I should ask about? Here’s what we’ve done so far:
1. Gem/Cis & Gem/Carbo
Thanks for your help!
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