daisy
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When It comes to trials do you seek them out or your doctor? And the combo gem/cis has been the standard but the cis part has been debated? Any thoughts?
I am trying to understand that article?? Does it say that after a resection if there is a reoccurrence the prognosis is less than a year survival?? Doesn’t make sense??
I’m gonna give this a shot again:) anyone in Florida have a doctor that they are currently using and would recommend?
Thank you for the info…I was wondering if anyone on this forum has a Dr. There that they have used and recommend? My mom has her scans at Sloan but I need to find a place local…I hate that she has to fly back just for a scan.
My mom has a scan today at Sloan and happy to report CLEAN!!!! Resection was done 8/5/2013 and chemo completed 3/2014. Dr.Chapman at Barnes did the resection!!
Susie,
They recommended the radiation following chemo?? Did you have any lymph node involvement? Also have you had any reoccurrences?Just want to clarify it was Dana Farber and Hartford Hospital that missed the boat in my mothers case not MSK. In Wayne’s case I believe it was MSK. Crazy thing I neglected to mention…when our local doctor found out about our success he wasn’t even happy…..apparently he ego must of been bruised. He should of been excited and wanting to learn everything that took place to make his INOPERABLE TERMINAL patient not cancer free. And again YES I know reoccurrence is high but we have had a quality 10 months post surgery. Instead he scolded me as if I was an unruly child. Good thing for my mom I am and did not listen to that doctor!!!
It just sickens me that this is happening and we need to get the word out there that something can be done….maybe not everyone but some???
Another successful resection done by Dr. Chapman last month story similar to my mothers. This women’s son found Wayne’s article just like me….question is WHY AERNT OUR DOCTORS OFFERING THIS OPTION TO US?!?!?!!!! It took close to 8 weeks from diagnosis to surgery if our doctor sent us there right away it could of meant no lymph involvement?? We will never know.
I need to chime in Duke. My mother was diagnosed almost 1 year ago to the day. It was June 19th. After close to a month of tests and surgery for stents we were told that she had a “Klatkins tumor” which we later found out was not the case and that she was inoperable. We had 4 doctors in Connecticut tell us that and a final opinion from Dana Farber saying the same. INOPERABLE 3/6 months with no chemo 6/12 with chemo. My mom had a 7 cm tumor on her liver/bilary duct. We were shocked to say the least considering my mother is a marathon runner who at the time just completed one not long before he diagnosis. It was very late one evening that I read Wayne’s article about his wife. I didn’t think much about it at the time but a few days later I read another from a double transplant CC survivor….both articles mentioning Dr. Chapman. I figured I had nothing to loose and if I did nothing I would be loosing my mother. I contacted Cathy and Wayne spoke to them about their experiences with Dr. Chapman and decided to contact his office at Barnes. I did just that and a week later my parents flew out there and I followed shortly after. My mother had a complete resection and followed up with 6months of chemo. In April we ran a 10k together and this past weekend she ran a 5k with my son. Yes the chance of reoccurrence is high but she has had an amazing year and as of today is cancer free. Big change from last year…if I listened to the CT doctors I would be planning a funeral around this time…..instead I am planning the next race we run together. Our doctor never told us that this surgery was an option EVER!! Hard to believe isn’t it???.
My mom had a resection and radiation. There were 3 lymph nodes were involved. Our Dr. at Sloan recommended just gem for 6 months. My mom is a runner and she ran the entire 6 months. There were few side effects much less than those of gem/cim. If there is no proof that it works and your quality of life will suffer than what’s the point..,to feel better about doing everything?? But with out hard core proof I feel (only my opinion) fight aggressively when you need too. Again everyone needs to do what they feel is best for them.
Nikki,
My mom too did not have an elevated Ca19-9 count. Hers were totally normal, even though she had a 7centimenter tumor. I too questioned that and not sure who responded but I remembered them saying that in 20% (don’t quote that exact number) that the CA marker does not elevate. Not sure why?? Enjoy all your great news!! You are correct miracles happen every day.
Thank you for writing in!! It is great to hear from people who are several years out from original diagnosis.
Hi Melissa,
My mom had a resection in August. She has intrahepatic CC so she was not a candidate for a transplant. If she had Hilar CC like “Jathy” you can read her posts…she had a transplant more than 4 years ago. From my understanding they say that once you have a transplant you can not receive chemo?? Your post says your husband needs to wait 3 months?? This is ONLY my opinion I am NOT a doctor but I do think that getting the transplant is not a negative!! CC is not always receptive to chemo so getting rid of the tumor seems like a good start!!
