Topic: 3 years- non-resectable

Hi,
I wasn't going to post since I'm not the patient and many already may have read  about my mother.  However, yesterday was her 3 year anniversary since diagnosis and it coincided with her 57th wedding anniversary. Although we  only found out a week or so afterwards, on Mom's 54th anniversary she got the news.  Later we were told that Mom and Dad spent the evening putting on music and dancing together in what they thought would be their last anniversary together (she was a young bride at 19- wanted to either become a nun or have 6 children).

Mom went to surgery in Nov 2013,  They came out to us in the waiting room 3 hours later and said it couldn't be removed (4x6 cm ICC tumor).  She recovered from surgery and went through 3 cycles of Gem/Cis.  In Feb 2014, first SIRT (y-90) treatment.  It killed much of the tumor.  However, we pushed to have a second treatment, and in Nov 2014, zapped it again with Y-90.  Since then, she has no evidence of disease (NED) . We now go every 6 months for scans (and she still has her port flushed regularly), but as time goes by, we're more and more optimistic that the cure they said wasn't possible without surgery, may be a reality.  Time will tell.

Best wishes to all,
Catherine

Not a medical Professional-  just someone who got caught up in this lousy disease.

Re: 3 years- non-resectable

Dear Catherine, of course you should post and a big HAPPY ANNIVERSARY to your Mom! What a survivor story and it will bring hope to many. Your parents remind me of mine as they loved to dance. Teddy used to call them Fred and Ginger! You may be too young for that. LOL
I am so very happy for your Mom. Of course I do know that she has an awesome Caregiver!

THANK YOU FOR LOVING ME! Teddy ~In our hearts forever~ATTITUDE is EVERYTHING

Re: 3 years- non-resectable

Catherine, what a wonderful anniversary, Your mothers story gives hope to so many who are told resection is not an option. I have known a few patients that would have wished for this kind of outcome. May your parents blessing continue for many more years.  Pat

Senescence is a beautiful thing....

Re: 3 years- non-resectable

Hi Catherine, what a wonderful celebration. After reading your about your mothers success with the SIRT so far it really gives me hope that my mother can also have a good outcome and may give hope for many others out there who are not eligible for resection.

Let's hope we hear the same good news for the next anniversary!

Tiah

Re: 3 years- non-resectable

Catherine, I a over the moon happy about your mom's latest news.   So many things to celebrate.   Give her a big hug from me.   Love hearing this!!!

"Just for today, I can get through anything."  I'm a cancer survivor, not a doctor.  The opinions I state are my own, based on my personal experiences.    As always, talk to your doctor about your concerns and treatment.

Re: 3 years- non-resectable

Thats wonderful news. Happy anniversary and congratulations!!!   <3

Re: 3 years- non-resectable

That is incredible!  It's awesome to read this story.  Yay!

Re: 3 years- non-resectable

Thank you so much for sharing!  My husband had surgery on 12/1/16 and they came out after 4 hours to tell us that the margins by the liver and the pancreas both tested positive for cancer, even though the only tumor was 2cm long in the common bile duct.  Long story short, they chose not to do the Whipple after resecting more than 70 percent of his liver without getting clear margins.  They have told us he is not a candidate for further surgery.  We plan for chemo after he recovers from his 16 hour surgery, and your Mom's story gives us hope!!

Re: 3 years- non-resectable

Good morning all,
So begins a new year. I am new to this although been reading many entries. My 60yr old husband was dx June 14, 2016 with inoperable intrahepatic choliangiocarcinoma, A 10cm+ in right lobe. Initial discovery was thru elevated alkainline phosphatase lab. Then imaging, then confirmation needle bx. July 12 had y90. Tolerated well, no post op symptoms, back to work next day. Following week flew to Houston, md anderson, july 28th started gem/cis,  md anderson protocol, every 14 days. In the interim had radio frequency ablation on what turned out to be 4 small sites( less than 2.5cm) 2 in right lobe 2 in left lobe. Because it took close to 3 hrs overnight stay in hospital. Post op was uncomfortable for several days but back to work  9/30 2nd pet scan no light up. MRI with contrast 11/3/2016 docs words, "remarkable shrinkage". Had 11th chemo 12/29/16, aside from only recently some fatigue 5th day from chemo, tolerating well. His afp tumor marker on dx 394. As y90 worked it went up to 551, then 794, I believe lysing into bloodstream. Then down it went to 87, 25, since October has been in normal range 7.0, 6.9, 8.0 As most of you know tumor markers are not definitive but normal range is encouraging. Foundation One IDH2 is his predominate mutation. We believe strongly the y90 was huge contribution to shrinkage of large tumor and chemo controlling microscopic ca cells. In our hospital system here in broward cty fl our surgical oncologist considers him a good possibility for resection of right lobe. Not sure if sx would have clear margins, right and middle hepatic veins, still some encasement. Our interventional radiologist strongly supports possible sx choice. My husband continues to work full time. We are grateful 6 mths after dx still here. Both of us in medical fields. Any comments are appreciated.

Re: 3 years- non-resectable

Dear Patti, welcome to our remarkable family and the best place to be for CC support. You and your husband have got a good fight started against this CC and wishing you much more success. You are already living our favorite words....not only shrinkage but remarkable!  The other words  are possible resection!  Hoping with this New Year you will be sailing along to that goal.
Your post is a great encouragement to others and looking forward to continued good news!

THANK YOU FOR LOVING ME! Teddy ~In our hearts forever~ATTITUDE is EVERYTHING

Re: 3 years- non-resectable

Patty....hi (again).....what a success story you are sharing with us.  Thank you. 
Have you considered a surgical consult with a physician known to resect complicated CCA patients?  Considering the encasement, hence surgery leaving your husband with residual disease may not make him a perfect candidate for a resection. 
Has treatment with  Gem/Cis  been discontinued? 
There are clinical trials for targeted drugs for IDH1 and IDH2 mutations.  Perhaps this would be a conversation  to have with the MD Anderson team, including the interventional radiologist regarding additional Y90 treated, if so  deemed appropriate.


Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: 3 years- non-resectable

Thank you for those thoughts Marion. Actually, tomorrow, Thursday we are scheduled to speak on the phone with the oncologist at MD Anderson that we saw in July, Rachna Shroff. Will ask her about IDH2  trials and other topics. Scott continues on gem/cis every 14 days as per Dr Shroff. He had his 11th treatment this past Thursday. Some fatigue and perspires more often but overall tolerating well. Plans are for him to continue on it. It's interesting you mention another y90. I was wondering about that. Our interventional  says it, the larfe tumor is essential dead. When looking at scans there is a edge on tumor that halos so to speak. Dr says that is typical of presentation after y90 and doesn't necessarily mean there is activity there. But contemplating that,if there is activity it seems it would benefit to zap it again with y90. I know we will revisit that with our interventional radiologist  who really is so supportive to us. I know surgery would its advantages but if clear margins cannot be achieved it  would not be helpful as hard as that is to say. We are awaiting a response from a surgical oncologist outside of Florida by the end of the week. Thank you again for your thoughtful help.

Re: 3 years- non-resectable

Patty....you are in good hands with Dr. Shroff as she is "very" familiar with this cancer and has presented at our annual conferences.    As far as I know Y-90 can be repeated, but it depends on the nature of disease response to previous treatment.   I would trust the radiologist's opinion in that he sees a necrotic tumor.  Remember, your husband  will be closely watched for some time to come and changes will be charted accordingly.   
I think the bigger issue is the response to the current treatment with gem/cis and whether maximum benefit has been reached.  This is a question Dr. Shroff will answer, which then will determine the next course of systemic treatment, if so appropriate.

Good luck, dear Patty,
Hugs
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: 3 years- non-resectable

Why the tumor is non-resectable ?

“What does not kill us makes us stronger.” – Friedrich Nietzsche

Re: 3 years- non-resectable

it was ICC, and the location (I believe extending to the vena cava) was such that to remove it all, the risk of bleeding/dying during surgery was too high to continue.

Not a medical Professional-  just someone who got caught up in this lousy disease.

Re: 3 years- non-resectable

Pattic

Your husband and my diagnosis is about the same time.  I was wondering if he has had any probem with low platelets after chemo?  I'll have another biopsy March 1st, then Y 90.  It's much more promising than just hearing there is nothing that can be done. 

Janet in Phoenix

Re: 3 years- non-resectable

Hello what now,
Platelets are outside of normal range, alittle low but not by a lot. 15 treatments of gem/cis since starting last July, the 28th to be exact. Every 14 days, md anderson protocol as to mg dosing. Is that what your on? He is doing well as of now. Working, good appetite, some fatigue about 5th after chemo. His AFP tumor marker has been in normal range since last November, last one was 5.8 Normal range:0-8,1. As of right now 3 different medical institutions from across the country, johns hopkins, University of Southern California and MD Anderson all say not operable at this time. Clear margins not possible and too risky. Difficult to acknowledge but we have to. Right now good quality of life. Trying to stay positive, enjoy life. We know that the chemo can do 2 things: stop working or become too toxic. Dr Shroff mentioned the possibility of taking a cisplatin break if it becomes necessary in the future. Scans coming up in mid March, hopefully more shrinkage andd no Mets. We pray for that. Hope this helps.

Re: 3 years- non-resectable

how y 90 is given? what are the sife effects? Any more comments or opinions about y90 ? thank you all.

“What does not kill us makes us stronger.” – Friedrich Nietzsche

19 (edited by crfisher Mon, 20 Mar 2017 16:02:39)

Re: 3 years- non-resectable

Under search type in y 90 for more information

http://www.sirtex.com/us/patients/about … rospheres/

Re: 3 years- non-resectable

thank you crfisher

“What does not kill us makes us stronger.” – Friedrich Nietzsche