When chemo is not working!
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Yes, I know Shellie, just what you are feeling. When you feel overwhelmed take deep breaths, or a walk. I used to get in the car for a 20 minute drive, put a Mama Mia CD in and sing to the top of my lungs. When I felt better I would go back home. Good luck with Cleveland Clinic! Sending you some huge cyber hugs! { } { } { }
Lainy,
Thank you for all the information! I have checked with MD Anderson what I have come across is insurance isn’t accepted in other states
I am however going to make a phone call to the Cleveland Clinic see if that gets me anywhere. So scaryShellie, I apologize as I am sure I never saw this post. I still feel you need to see an ONC who has treated more patients with CC so has more experience with it. 8 weeks is a long time to go with no treatment at all. This is not a common Cancer as it is still very rare and hard to control and I just have a feeling you need to go elsewhere. I would pick a couple of Hospitals/ONCs and at least get their opinion. Dr. Javle at MD Anderson in Houston is one of the tops in this field Sometime he will give a treatment suggestion if you sent him copies of all tests and LABs. Closer to you is Sloan Kettering in NYC, Cleveland Clinic, NY Presbyterian, Dana Farber Cancer Institute in Boston.
Treatments do not differ because of age as this is still a very rare Cancer, however being younger does help. Usually the plan would be to use chemo to bring down the size of the tumor and then hopefully surgery can take place, it has happened before even to Stage 4 patients. The plan is to find the right ONC and Hospital and then we hope for the best, it has happened before.
As for the Y-90 treatment IF that is suggested by the ONC, you can read more about it if you use our Search button at the top of the page and type in Y-90. Knowledge is one of our best tools for fighting this Cancer. Wishing you the best, take a deep breath and ne very strong!Lainy,
I am all for 2nd and 3rd opinions I just don’t know where to start! I am so over whelmed and feel hopeless! So before he was diagnosed we went to a few different doctors before we decided to go to U OF M the reason we decided there is because the treat this disease all the time it is actually common there but I feel like everything is protocol nothing “out of the box”. Dale is the youngest person they have there, so why isn’t he getting different treatment?? How do they determine what he needs?? I get so frustrated I just don’t know what to do. Do you think I should check with somewhere else for the Y-90 treatment maybe someone else would be willing? I appreciate all your help
Dear Shelliec, you are both going through so very much no wonder your head is spinning. I have a question for you. Have you given any thought to another opinion? We are big believers in 2nd and 3rd opinions. Like I always say, different DOCs see things differently. You want to make sure all bases have been covered. Also I am posting a site below which you may find helpful.
http://cholangiocarcinoma.org/newly-dx/
shelliec….you are welcome. Also wanted to mention that TAPUR study sites are predominantly in the State of Michigan.
Hugs,
MarionShelliec….please don’t despair, think chronic disease and pursue other options, perhaps a clinical trial.
1. ASCO Tapur study: Please see below link:
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=140232. NCI MATCH: Please see below link:
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=138603. a clinical trial based on molecular markers obtained from tumor tissue analyses.
Hang in there, treatment options are plenty – finding the right path requires time and perseverance.
Hugs,
MarionMy fiance went through 6 months of chemo gem/cist with no change in the tumor. We went to discuss the Y-90 procedure and they tell us the tumor is to big it is 40% of his liver they are afraid it might affect the good part of the liver! I swear nothing ever works for him when will this end! I need something to work for him he keeps hitting walls and it is affecting is mood he is really down and I feel awful always trying to make him feel better and tell him we are going to get through this! I need some positivity in my life thats why I come here makes me feel better….
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