You are not logged in. Please login or register.
Search options (Page 1 of 2)
Posts found: 1 to 25 of 45
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 parents may be making a permanent move to Florida. At this time my mom is under the care of Dr. Abou Alfa at Sloan in NY. They are snow birds but a recently development may make Florida a permanent residence for them. We just saw Dr. Abou a few weeks ago but this development just happened. We will consult with him jp hen we see him next but in the meantime if I remember correctly someone mentioned a Dr. In the Tampa area?? They live in Sarasota.
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!!
They recommended the radiation following chemo?? Did you have any lymph node involvement? Also have you had any reoccurrences?
First I will start out saying mom's doing great! She is past the 1year mark from her resection, finished chemo months ago and life for her is getting back to normal. After her resection the oncologist at Barnes recommended radiation following chemo. I have read 3 cases of long term survivors who did just that and some are 8 years out!! The onc at Sloan does not think she needs it because he says there is nothing to radiate. From my understanding they would radiate the area surrounding the resection site. The liver as we all know regenerates itself so the argument that what radiate healthy tissue because you can't radiate the same area twice doesn't make sense. Not trying to overpower the docs but there game plan is to sit back and wait for it to come back mine is to be PROACTIVE not reactive. If I listened to the first 5 docs mom never would of had the resection since they deemed her inoperable...I guess that's why my trust level isn't quite there. Any thoughts on this topic???
My mom is almost 1 year from her resection and she is 6 moths out from finishing chemo. We went for her 2nd scan since completing chemo and it was clear:))))))))) happy days!!!
After my mothers resection from Dr. Chapman we returned to Ct and are now under the care of Dr. Abou-Alpha at MSK. He is the author of the free CC book that was just published. Standard of care says gem/cis only prolonging out come by 3 months. I was happy that Dr. Abou put my mom on only gem. It was not bad at all...although she would still gripe that she could only run 3 or 4 miles a day instead of her pre cancer regimen of 10 miles. My point is that she was able to still have a quality of life while on Chemo, the doctor said they were moping up cells. There were 3 nodes involved so they out her on gem only.
Our Dr. Also said that there was no need to radiate that there was nothing to radiate?? So many mention radiation after surgery?? Any thoughts?
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.
Just wanted to update everyone that last week mom and I went to Sloan and she had her 1st scan since completing 6 months of chemo and happy to reply it was CLEAN!! She had 6 months of chemo (just gem) and did well thorough out the whole 6 months. My husband and I ran a 10k with her a few weeks ago and I must mention that she beat us both!! So we have the next 3 moths with no chemo and no cancer!! Hopefully many more to follow.
If it were not for finding posts on this forum by my dear friend Cathy and a man named Wayne Parsons we would of never found Dr. Chapman who ultimately saved my mother by preforming a resection that 5 doctors in our local area and 1 at a major cancer hospital in Boston said was impossible!
On June 19th 2012 my mother was diagnosed given a year to live with chemo less than a year with out.
2nd 3rd and many more opinions should be sought out when battling aggressive cancers....forget bedside manners! Many people frustrate me beyond words when they say "I LOVE my Dr." And they gave me hope.... Listen hope is great....thankfully our doctors had no bedside manner in CT which is why we continued to search for other opinions. I am horrified to think what would of happened if they were super nice....I would never of been hard pressed to search further.
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.:)
I am curious if CC is such a rare cancer then why is it that at Sloan there are many doctors mentioned in this forum? My mom is under the care of Dr. Abou Alfa which I have never seen mentioned on this forum? We are happy with him that is not my issue, it just struck me odd that's all....any thoughts??
Thank you for writing in!! It is great to hear from people who are several years out from original diagnosis.
Congrats!! Great news!! I always say NEVER SAY NEVER!!
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!!
She was in NY otherwise she would of RAN home lol!! She came in second in a race last week...I want to make a Christmas card with her holding the trophy and send it to the doctors who gave her less than a year and gave up on her! But now that would not be nice would it??????:)
Mom had her scan today and all is clear!! Best Christmas Gift EVER!!!!
So sorry my cell is 860-836-2600 please call
My mom's tumor markers were never high....even when she was newly diagnosed with a 7cm tumor...I see many post about the markers being good or bad but I am wondering how accurate they could be??
Dana Farber gave my mom our 5th opinion...said she had a Klatkins tumor (she did not) and said she was inoperable....(they were wrong) we sought out Dr. Chapin in St. Louis. We simply called sent our records and the team of doctors viewed everything with out even getting insurance info?? Cost us nothing and ended up saving my mom. She had her resection and is undergoing chemo. She is doing great. Give Dr. Chapman a call and speak to Heather. Mention my name (Rosetta, Rose Famiglietti's daughter) they will help you. Feel free to call me anytime 850-836-2600
I really thought Dana Farber was the best we were VERY wrong. I am curious if it was the same doctor. We saw Dr. Enzinger
Gavin I read the article can you explain what it means?
It's not fair at all...my mom runs marathons! Never eats anything processed EVER!!! Washes veggies fruit etc. doesn't touch red meat???? Doesn't touch sweets?!?!? 3 months after her resection she is undergoing chemo and is STILL running almost daily!! Last week she ran 8 miles one day....she said her time stunk but still 8 miles?? It just blows my mind??? I read so much that most cancers are lifestyle not genetic??. Just wish we had a clue.
I know it should not matter because it can't change anything but does anyone know how CC is contracted?? My mom was this epitome of health and my kids now say if their grandma who is super healthy got this than why should they eat their veggies?? I provide them with an appropriate response for a child....but I am looking for an answer too??? Has anyone out there got a clue?
My mom is taking only Gemzar no Cisplatinn....we went to Sloan and the oncologist knew my hesitation regarding chemo. I read all the time that it is not very effective. I was happy to see that he put her only on the Gemzar. The standard of care is usually the gem/sim combo. I felt that he knew how important quality of life is and did not throw an intollerable treatment her way. She walks or runs every day and feels great. Very few side effects...just another idea to think about.
Posts found: 1 to 25 of 45