Posting for a friend whose account is not yet approved so she can’t post.

I'm sorry we are meeting this way but so grateful that this site and discussion board exist. Like you or a loved one, my mom was diagnosed with chlolangiocarcinoma  - sporadic hilar chlolangiocarcinoma. I want to share the details of what is known and would appreciate any information, feedback, experiences any is willing to share, especially as it relates to course of action, etc.
 
My mom, 65, was diagnosed last week. Based upon her MRI, ERCP, and CT angiogram, she has a mass in her bile duct, the right side of her liver has begun to shrink and the left side has started to grow. The ERCP brushing did not show cancer cells. There are signs that the tumor looks to be close to the portal vein and it might be touching it but there should be minimal involvement. Her CT came back clear so all signs show this has not spread further. Fantastic news!
 
We've met 4 surgeons in Manhattan in less than 1 week. All have given the same information to us. They can do a resection (YES!!) with hopes of it being a cure and there is still a small possibility this might not be cancer but we won’t know until after surgery. From reading up, I now know how fortunate and amazing my mom’s situation is for CC. We are SO grateful.     
 
The surgical plan is to remove the tumor in the bile duct, reattach the bile duct to the small intestine, remove the right side of the liver and 15-20% of the left, remove the gallbladder, and remove lymph nodes.
 
The current plan is to move forward with a resection within 2 weeks.  My mom chose Dr. William Jarnagin at Memorial Sloan Kettering.

I would love opinions on whether we seem to be on the proper path, opinions on MSKCC or just any thoughts in general. We are open to honesty and a change of plan if necessary.
 
Thank you all so much. Remaining positive and hopeful smile

2

(3 replies, posted in Introductions!)

A new friend who will be able to post in a few days asked if any one has with Dr. Myron Schwartz at Mt. Sinai. Her mother has CC at is looking at a possible resection. Another Doctor she is inquiring about is Dr. William Jarnagin. Any info on either of these doctors would be greatly appreciated. She is able to view the responses and will be able to post herself soon.

3

(1 replies, posted in Clinical Trials)

Has anyone heard of a phase 2 trial consisting of gemcitabean and cisplatin along with a MEK inhibitor pill trial #13004

4

(16 replies, posted in Members' Cafe)

You mentioned a Dr. M that Percy used...gave out his email for questions? May I have this email and a doctors name if it is still available?

I went under users....looked up Percy did not come up??

Never know exactly where to post...sorry to keep posting new topics.
My mother met with onc today in Tampa. It's been a year and a half since her resection and a year since chemo was completed.  She has had a reoccurrence. A 1 1/2 cm lesion in her liver and 3 nodes involved. The onc said that radiation can not be done because the biopsy of the nose showed it is outside the liver near the pancreas???  He said radiation was futile and said getting rid of the nodes effected was cherry picking. He wants to put her on gem/Oxi. Looking for thoughts on why no radiation??

When my mother asked was it worth it that she even had the surgery he said that it was a highly debatable topic...I said how could you debate she had a great year... No chemo, went on a cruise a happy healthy year?? Can anyone help me understand how removing a 7cm tumor was of no value. He did mention that doing so gave you hope and now what?? He said chemo is effective 25-30 % of the time?? Also said that the gnome testing is a waste because you can't do anything with the information....unless there is a trial there is nothing approved that he could prescribe?? Thoughts please

Julie what chemo did you do?

after your resection did you do chemo?

my mom has had a reoccurence after being clean for over a year. she has a 1/2 cm lesion on her liver and 3 nodes involved.

If your case is similar should you share what worked vs. not?? i will be conferenced in tomorrow on the meeting with the onc and would love to know what i should ask and be looking for. Lisa Crane as always was extremely helpful looking to see others experiences. as of not no mets anywhere else. I have been wanting radiation along with chemo but so far no one has agreed to radiation?????

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?

My mother has had a reoccurrence and I am taking a poll on those of you that have had a resection with a reoccurrence. What treatments and or surgeries did you receive? Success etc?
3 lymphs are involved and a 1 1/2 cm lesion. Any information would be greatly appreciated,

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??

My mother had an MRI instead of her usual CT SCAN and they spotted a lesion and lymph nodes look suspicious as well. They will be doing an endoscopy Monday and a biopsy will be done at that time. We are pretty certain we know it's back.
My question is has anybody after a resection have a similar reoccurrence and if so were they treated with chemo or radiation?  Also the doctor MRI was done at Moffitt and our inc at Sloan said he could not weigh in on it because he has to do his own scan...they are not to open to working with other doctors. My mother is a snow bird so they do need to have a doctor in Fl as well as CT. the onc assistant at Sloan said if were so happy with our care at Moffitt why would we need Dr. Abou to weigh in on the scan? I am shocked that, that was her response.

Would like to know for those of you that are having scans done regularly… Do you have CT scans pet scans or MRI's? We usually do CT scans and today by a different doctor my mother had an MRI trying to understand why one would be better over the other?

15

(8 replies, posted in Hospitals)

I'm gonna give this  a shot again:) anyone in Florida have a doctor that they are currently using and would recommend?

16

(8 replies, posted in Hospitals)

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!!

19

(4 replies, posted in New Developments)

Susie,
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???.

25

(16 replies, posted in Introductions!)

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.