cathy1024
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I truly believe that our bodies need a place of harmony, free of stress for the best healing to take place. This doctor you have had has only caused you stress and to have little if any faith in her. It is definitely time to get a second opinion and to find someone that you can believe in and takes time to believe in you. Best of luck to you.
Cathy
Will be praying for a successful outcome for Lauren on her surgery and for guidance to the surgery team. I will keep all of you in positive thoughts!
Cathy
Jumping in with both feet on this subject…I come to this site because it gives me real world answers to questions about CC. I love the support and how info can be followed to actual studies and information. Yes the statistics are staggering and a slap in the face but that is what they are. I don’t think hiding them on special pages or calling out hey…bad news here, is the way to handle them.
I love the way this website is set up from the threads of personal challenges to the dry read of a study. Every person needs to decide on their own how much “honesty” they need at any given time. It’s very easy to hit the back button if it gets too much for you.
Currently Im looking at studies at what people have done after a 16 course gem/ cis. So talk about statistically dry and depressing looking at studies with some outcomes I’d just rather ignore. But I’m learning…I want to know what has the best chance in the bad lottery of having CC because each little improvement of 6 months longer gets me that much closer to them finding a cure.
So big kudos to all that take the time to post results and hunt down studies and keep us on top of the FIGHT!Cathy
I did a Phase 1 study drug at Sarah Cannon Research Center in Nashville, TN. I had an unknown primary to start and I did a study that matched up to one of my tumor markers. I live 5 hours away and drove there 3 out 4 weeks a month. To start I was there Day 1,2,3,8,9. Then did blood tests at home on Day 15. Then returned to TN the following week to start Day 1 all over. I was on 2 chemos plus study drug and as time went on they dropped other 2 chemos and I only had to be there Day’s 1 and 8. Initially we saw improvement in my tumors but after chemo drop we realized the dropped did better than study drug and we had a probable primary cancer of CC by then. I did the study for about 6 months. I was also one of the last people they let in so most of the figuring out dosage part had been done.
So I’m now doing SOC chemo of Cisplatin and Gemzar. If you have any more questions please ask.
CathyThanks for the information. I just finished the 15th session today and should finish the 16th on March 20. Then I will get a scan and then based on what my results are for that I will have to decide what the next step will be so all the information posted above will definitely help. Thank you to everyone! Plus if anyone has done something after the gem/cis 16 cycles if you could let me know what it is/was I would appreciate it.
Thanks
CathyJayne, I was initially diagnosed as an unknown primary. I had 3 biopsies with 4 different results. One actually had two things they thought it might be. I went to Sarah Cannon in Nashville where they specialize in unknown primaries. Because of the unknown diagnosis and the fact that I had tumor markers that matched up with one of their Phase 1 studies, I actually started on a study as my first treatment choice.
Reading all the paperwork is scary with side effects but that is true with every treatment out there. You just need to figure out with the help of your doctors and 2 and 3 opinions what works best for your circumstance.
I had no specific cancer to treat ..so at least the study I tried matched my tumor markers. Initially I showed improvement but then plateaued so I stopped that and am now on 16 treatments of gem/cis. My experience on the study drug was a positive one…they worked with me and my symptoms and once I plateaued we knew it was time to move on.
No matter what choice you make a good CC doctor will stay on top of it with scans and will be ready to offer new suggestions of treatment if need be.Hi Daughter, I’m new to the site but was diagnosed with metastasized cancer with tumors in my liver and some bones of my torso in Dec 2011. I too had no blood markers or any other abnormalities that could pinpoint a primary cancer. I had 3 biopsies none of which gave them any information. After a 4th biopsy in Feb 2012 my tissue was sent to CA and genetically tested and they now believe there is a 67% chance it is CC. I started with a trial drug and then changed to a Gemzar/Cisplatin combo in Sept. that is what I’m currently on, I have 3 more treatments.
This is definitely a challenging journey but keep thinking positive and continue to research. This is a great site..it has people to help and support you and has great connections for research and helpful hints.Cathy
Thanks all for the welcome and encouraging words. My scans were good. My liver tumor is continuing to shrink and my bone mets are stable with nothing new showing up….so I call that good! Just need to focus on what will be next after the gem/cis. I only have 3 treatments left of that combo.
Always need to keep ahead of this…Cathy
Cathy and if you don’t mind I probably will give you a call since we are both in STL. I’m out at West County and Dr. Stephen Sorscher is my doctor.
