March 21, 2017 at 9:12 am #15116
thank you crfisherMarch 20, 2017 at 10:59 pm #15115crfisherMember
Under search type in y 90 for more informationMarch 20, 2017 at 10:53 pm #15114
how y 90 is given? what are the sife effects? Any more comments or opinions about y90 ? thank you all.February 27, 2017 at 9:30 pm #15113
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.February 25, 2017 at 12:57 am #15112whatnowMember
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 PhoenixJanuary 18, 2017 at 11:09 am #15111middlesister1Moderator
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.January 17, 2017 at 10:09 pm #15110
Why the tumor is non-resectable ?January 4, 2017 at 6:35 pm #15109marionsModerator
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,
MarionJanuary 4, 2017 at 6:04 pm #15108
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.January 4, 2017 at 1:37 am #15107marionsModerator
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.
MarionJanuary 2, 2017 at 5:19 pm #15106lainyMember
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!January 2, 2017 at 12:44 pm #15105
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.December 29, 2016 at 7:50 am #15104spokanemomParticipant
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!!December 22, 2016 at 3:37 am #15103positivityParticipant
That is incredible! It’s awesome to read this story. Yay!October 5, 2016 at 7:52 pm #15102helpformom2016Member
Thats wonderful news. Happy anniversary and congratulations!!!
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