Sorafenib Tosylate and Erlotinib Hydrochloride in Treating Patients Wi
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thirdone….Stable has taken on a new meaning when dealing with this disease. Congratulations. Your Dad is doing so well especially with the Erlotinib, which can be quite harsh and difficult to tolerate. Thanks for sharing the great news with us.
All my best wishes,
MarionHi Thirdone,
Thank you so much for letting us know how your dad is doing. This is great to hear that your dads CT scan has shown no tumour growth, good news as you say! Golfing, planning vacations and working out too, I love that! And I know that your dad watching his grandchildren will bring many smiles to his face, and will also keep him very busy as well!!
Best wishes to you and your dad,
Gavin
Dear Thirdone, that is excellent news on your Dad. Wishing him continued success. No growth is good in any book! So is golf, working out and vacations!
I would like to give you an update on my Dad. He is still receiving ,the Sorafenib & Erlotinib, although the study has been suspended. He received the results from his CT scan on Tuesday. His tumors are the same size and there is no change. Good news in my book! In October, my Dad will have been on this study for 1 year. He is still playing golf, planning vacations, working out at the health club and watching his grandchildren.
Sidig….This cancer is quite resistant to chemotherapy. You are doing everything right by continuing to search out other options. You
I know with the clinical trial they wanted my mother to start, if the cancer came back anywhere, you would be taken out of the clinical trial. My mom opted for not doing the trial, however, they did the exact same treatment as the trial on her. This treatment did not work. I feel she would have been more disappointed being taken out of the clinical trial. Best of luck with the next chemo regimen.
Marion, thank you for the help, it has been a daunting task looking searchin through the trial information, so the link you gave me is helpful. She had a 2nd opinion with Mayo in Jax and honestly we really liked them…spent a lot of time with her covered all option (at the time), so we are going for a consult with them as well. We have also already followed with the cancer center at Emory in Atlanta, just a slow process, everything is 2 weeks, 2 weeks! We will have to have all our t’s crossed when we go in next time with all our questions….I’ll let you and the community know how it goes. Getting bounced from the first trial is depressing because it is seemingly working on existing tumors (they were shrinking) but with another one popping up they took her out…..we support as much as we can, but of course she was really hoping the first one was the ticket!
Thank you again, Sidig
Sidig…..You should have been referred to another oncologist willing to search for another clinical trial. In fact, you may just want to search out someone else.
In the meantime you might want to take a look at our clinical trial listing:
http://www.cholangiocarcinoma.org/clinicaltrials.htm
Sidig….you need to take a look at the criteria as previous chemotherapy treatments may exclude your Mom’s participation in a specific trial.
Contact numbers are included in each of the listed recruiting or upcoming clinical trials.
Let me know if you need help with all of this. sharpeilover had mentioned that we should have something available for those searching for clinical trials. I will make sure to prepare it within the next few weeks.
Good luck and remember the next treatments very well may attack the non-responsive tumor.
Hang in there.
All my best wishes,
MarionMarion, thank you for the clarification, you help is soo apprecatiate. It looks like they verified two of the tumors shrunk but the 3rd had increased a little and with the new blood test the increase in CA-19-9 is apparently to much….they are taking her out of the study and recommending the start of Chemo, mom is verifying what drugs but i think the standards I have seen hear are what they are moving forward with.
I have a question though….her doctors are saying SHE is “free” to find another study to try and how far she is willing to travel or come back in two weeks to start the Chemo. They said they do not have the time or resources to assist in finding anything else other than the Chemo….is this normal….no more use to the study so on to the standard route….is this typical?
Sidig….I have been told that variations of the CA 19-9 are to be expected. Five or six points don’t mean much and easily could be dismissed. A consistent rising of these markers however, may (and I emphasize “may”) indicate progressive disease only when substantiated by other test results. It is the trend (upward or downward) that the physician will look for. I so much understand your Mom
I have a question for anyone in this trial….my mom has been in this for about 8 months and happy to say she is holding her own, not much in the way of side effects although there have been some, (I would consider minor in regard to what chemo would bring). Her growth(s) have not been increasing and have possibly gotten a little smaller. Waiting on next scan as one did show some increase however with others “possibly” smaller they think it the scan may have been off a little bit and did not measure the exact “slice”. Her Ca 9-19 number have been up or down….back in Dec.2010 when diagnosed it was around 48. Up and down since and up to 150 now. Most times up or down only 5 or 6 points. She is a little discouraged right now…probably more time to think about things after the 6 or 7 trips she has taken the last 9 mos however she asked me to write. I think this is minimal movement however the 100 point up since starting is freaking her out a little…is anyone experiencing Ca9-19 up and should this be any type of alarm.
Thank you in advance
Hi Sidig,
Thanks for sharing your mums great news with us, we love hearing news like this! Glad to hear that your mum is feeling well and has only minor reactions, and hopefully the next 2 months of the trial will go equally well and be successful also. And yes, any reduction or no growth is indeed a blessing.
My best wishes to you and your mum,
Gavin
Sidig….We have learned to appreciate the word “stable” and are thrilled to hear “reduction.” It appears that your Mom is only experiencing minor side effects. May the good news continue.
All my best wishes,
MarionGreat news! After the first 2 months of treatment on this trial we learned today there has been a 3% reduction. Mom is a “reserved” happy, she wanted it gone. Obviously that was not an option after 2 mos, but she is doing well and still only minor reactions (mainly just a rash on her hands). She is lucky enough to be continuing the trial for another 2 mos. Slow but sure is the course. Any reduction or no growth is a blessing!
Hi Sidig,
My Dad started the trial in October. He told me that he is on his 5th cycle. Two weeks after he began the trial, he had a pinpoint rash. (the rash never bothered him…located on his back and belly) Shortly after the rash began, the skin started to peel on his fingers & toes. Also, his heels were tender and at times, he felt cold. He has started and stopped the trial twice. Once, to have a stent put in and than two weeks ago, he had the bleeding ulcer. He does drink tea. He eats a regular diet, no alcohol.
As for the additional information from friends, the internet, etc…maybe your Mom could write down the ideas, and share them her doctor.
Glad to hear your Mom’s spirits are up!
-Thirdone
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