Sorafenib Tosylate and Erlotinib Hydrochloride in Treating Patients Wi
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Thirdone, Great to hear your dad has started up again, “hopefully” the Ibuprofen was the culprit! My mom’s spirits are up this week after starting the medication on Monday AND what I think is good news (and more importantly what she sees as good news) is…last week they had her re-take all the tests she had to diagnose the CC (PET Scan, bloodwork, etc. ) to establish the baseline for the Trial and she was told they did not see any percievable growth in the existing tumors!! Her attitude for now has really changed for the positive, so we are happy for this and starting treatment. Still good but told she probably would not start experiencing much in the way of side effects until the 2nd round of treatment.
How long has you dad been in the study? How long until he started experiencing any side effects? Do you know if they would allow him to take Vitamin D3 or would this be off limits while in the study. Mom is going all out to eat healthier (although I am encouraging her to eat MORE). I cant’ say I agree with the limited food intake she is following but whatever make her feel better is good for me. She has many friends who care a great deal, sharing pos. experiences of other survivors and encouraging her to do supplements, teas, etc. and this worries me because I want her to trust the doctors until a time we need to try other alternatives. Any suggestions on how to work with her on this type of intervention?
Hi Sidig,
My Dad met with the oncologist today. They are starting him back on the trial. The ulcer might have been caused from ibuprofen. Prayers for your Mom and please keep us updated.
Thanks, ThirdoneThirdone,
I noticed you put your Dad had CC 15 years ago. How was he treated then that he was able to keep it away for so long?Thirdone, thank you for that very good to know. My mom starts the trial today in Orlando, fingers crossed and prayers for a positive outcome. Trying to keep her hopes up but difficult.
Hi Sidig,
My Dad is on this trial. Unfortunately, last week he had a bleeding ulcer, was hospitalized for 5 days and has stopped the medication. He is having a CT scan tomorrow and has an appointment next week with his oncologist. At the appointment, he’ll see if he resumes the medication…maybe the dose will change? I like the idea of options! In December,while on this trial, my Dad had a scan and the doctors said the tumor shrank, a tad.
Please let your Mom know that my Dad had cc 15 years ago.
Thirdone
Marions, thank you for the Welcome. She has has all her tests done with MD Anderson (Orlando) up till now. We have an appt. next week with Mayo (Jax) for a 2nd. We are supposed to find out if she qualifies for the trial tomorrow and anxious to start any kind of treatment. She was supposed to start chemo but then the trial talk started. Like many others the lack of treatment protocols is frustrating. we were told Chemo won’t “treat” her just fight off anywhere else the cancer may be. I missed her last appt. and frustrated she did not ask what their actual recommended “treatment” will be outside of systemic focused Chemo. I’ll intro on the introductions page and look forward to talking with others. I am trying to get my mom on here to share and learn from those bravely battling, but we will see. Blessings!
Sidig…hello and welcome to our site. Hopefully, someone will come forward and answer your question regarding the above clinical trial. Although, you have been given a general time line, on this site, we continuously have seen people far surpass the physician’s prognosis. Therefore, we stay optimistic and realistic. Have you consulted with another specialist also?
Please, tell us more. The members on this site are always ready to lend a hand.
All my best wishes,
MarionMy mom has just been diagnosed with CC in the last month and this Trial is being suggested. It does not look like anyone has posted in a while and I wanted to see if anyone has participated or knows anything more about it other than what the doctors are telling us. I will go to the intro tab later to introduce myself. Does not appear to be much in the way of a cure. They told her 1 year with no treatment, is this typical? She has no physical symptoms yet?
sharpeilover….I agree with you. Knowledge is power. It enables us to make decisions based on facts.
BTW, Dr. El-Khoueiry has extensive knowedge of this cancer and has published numerous studies on Cholangiocarcinoma. He would know whom to refer your Mom to. I hope that you will receive an answer soon.
You are very proactive something your Mom must truly appreciate. I wish you luck with with all further searches. Please, keep us informed as your information sharing is much appreciated.
I live in the North Bay; not too far from you.
Best wishes,
MarionFinal Chapter to the Clinical Trial story:
I reached a “trial nurse” at USC-Norris, LA about the upcoming CC trial led by Dr El-Khouiery ( presenting at the May conference, btw).
My mother is NOT eligible because she has had prior systemic treatment (chemo) to her metastic CC.
It was good to be able to reach someone who could help me decipher the eligibility requirements listed on the clinical trial abstract.
I also asked about research on the small (less frequent) cancers: she said that docs do it partially because it can yield interesting info about the larger cancers.
As to use of off- label drugs and therapies, she said it is legal, but that insurance does not usually cover it.
She suggested that I try to get a referral to a doc with good knowledge of cc nearer my mother (who is in Fla) from Dr El-Khoueiry, via the USC-Norris referral department (we shall see if the system works!!).
While this may seem like bad news, the conversation was supportive, helpful and informative. I feel much more “plugged in” and hopeful that here may be a way for my mother to access some other treatments.Next Story will be: getting a referral to a Creative, Compassionate and Careful doc with lots of experience with stage IV CC for a second opinion… If this story ever happens, it will be in a different section.
Hi Marion,
I have now talked to person at NCI hwo gave only very general help, and am still waiting to hear back from Dr El-Khoueiry’s nurse-practitioner about the specifics of this trial.
Looking carefully over the eligibility requirements, one thing is looking very important- participants must not have had ADJUVANT or NEO-ADJUVANT chemo in last 6 months. I am not exactly sure what this means- my mother has been on chemo since Dec 24, 2009. It is her PRIMARY treatment.
Also, the many bone mets she has may make her cancer “UN-MEASURABLE.”
And, obviously, her blood values could be off.
I am trying to pre-vet all this so we do not rile her up about all this for no reason. Her local oncologist is also a bit balky about things.
I think we may end up just trying to get access to these drugs off-label somehow… but it takes the right doctor to accomplish that. This is all so complicated.
[My mother refuses to travel around looking for help- it has to be a really good prospect to get her out the door and on the plane again… She and my father live in Florida; I live in SF CA. She has already been to Sloan Kettering (in Nov and Dec) to get the initial diagnosis confirmed and the first treatment plan. She is on gem-cis– will hear if it is working soon.
My father seems think that Dana-Farber has some good promise.
I have had a hard time trying to distinguish among the cancer centers’ relative expertise on very advanced cases of CC. Ideally she needs help with the bone mets…]
Anyway, I always feel as if we are going around in circles!!!!!
Thanks to you for all your help and to all the others who post and share so much.
God bless you all.This just came up. You might have already seen it however, here is the link. (just in case.)
http://www.cancer.gov/cancertopics/factsheet/NCI/clinical-center
MarionWhy don’t you send him an e-mail. Yes, you might have to see Dr. El-Khouery however, where are you located? This is a multicenter study, SWOG approved therefore, numerous other centers will participate in this clinical trial.
Absolutely, you should discuss this with your Mom’s physician.
Everyone in this study will receive the same medications.
You might want to familiarize yourself with the clinical trial process. There are several links on our site or, you might want to go to the NCI site.
First and foremost, the criteria will be the deciding factor for your Mom’s addmittance to this trial. Therefore, you will need to speak with a physician. You are doing just fine with your postings however, if you prefer you may just start another one please, feel free to do so. We are learning as we are going. Thank you for thinking of us.
Good luck,
MarionVery helpful, Marion. The fact that it is not yet open is GOOD- gives us time to learn, apply, etc.
In Stage 2, do half the patients get nothing??I have a feeling there is something wrong with USC-Norris’ phone lines- I got through to his office from the USC-CARE number…
I have spoken to a number of people I have reached there- they are saying that my mother would have to see Dr El-Khoueiry… will hear back soon I hope, as the multi-site designation leads me to believe that may not be true.
Need to talk to him or the N-P about this.Meanwhile, we plan to show this trial to my mother’s current docs- maybe that will convince them to allow her to give one or both a try, if she wants that.
VERY HELPFUL, Marion, I cannot repeat enough.
Is there a good place for me to trace a story like this about investigating a clinical trial on the CC.org site so others can learn from this??
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