pattic
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My husband was diagnosed with intrahepatic cholangiocarcinoma 5 years ago. Not operable. He had y90 then 1 and half years of chemo, gem/cis. For the last 3 and half years he has had No treatments of any kind and has had his blood work and imaging every 4 months all within normal limit, including his tumor marker.. No recurrent or resideual neoplasm. NO metastasis. His oncologist and interventional radiologist are very encouraged, words by them “amazing”. He will continue with blood work every 4 months and imaging every 6 months. He is 65 now. We are beyond grateful to enjoy this time. Never give up hope.
My husband has IDH2, apparently there are no clinical trials for it? I believe 221 is for IDH2 but I guess nothing happening there yet as for cinical trials.
I wish you the best… I pray you see continued benefit.
Kind regards,
Patti
Hello Catherine,
Finally was able to email Dr Moeslein. Sent to: fmoeslein@gmail. I think it went. I shared as succinctly as possible our case and asking if I can FedEx him disc images and reports. I thank you for your help putting me in contact with him. I have read your recent entries regarding your mom. I hope that small floating site can be addressed either surgically or even by means of rfa or some of the other newer innovative treatments, like nanoknife? Thank you for your encouraging positive words and resources especially for all of us who are inoperable at this time.
Warm regards, PattiGood afternoon to all,
Thank you all for your encouragement and positive sensible help. Got some more good news, Scott had MRI 8/10/2017, more shrinkage…still fairly large, 7.4 x4.9 but down from, 8.0 x 5.2 last scan in may and from last year when almost 12cm. Also ” no definite tumor enhancement”. Even my onc sent text expressing his happiness regarding our result. I just read Molly _may and those inappropriate doctors and their attitudes. We had one of those last year right after diagnosis and we quickly replaced him. Also, my contribution too is to get the Foundation One testing….can be helpful now and down the road….but you go girl….keep on keeping on….
To Catherine, Middlesister, I pray your mom’s biopsy is scar tissue and not reoccurence. But you are a super advocate and caregiver….you will do what has got to be done and fight with every tool that is available.
I am going to go ahead and reach out to Dr Moeslein and send images….if you have a moment to give him a heads up that would be great but I will tell him we have talked via this site. Truly this community here is remarkable and I believe that not only are we are helping one another but all those professionals to keep looking, researching and fighting for a cure. Don’t give up!
Gratefully, PattiHello Middlesister (Catherine) and BGlass (Mary)
First of all thank you so much for your responses and encouraging comments, I know I sound wimpy but your comments brought tears welling up in my eyes of hopefulness. Not that I’m not hopeful but others who are going thru this like you all it is just so helpful the things you both said.
So, regarding the the small satellites that had RFA our interventional radiologist said they are dead. They show no activity and he has repeatedly said he feels they are completely dead, resolved. So, yes, I am wondering too about Scott on chemo continually. I know when Dr Shroff talked to us on the phone back in January/February she had said even about taking a cisplatin break….we did have authorization from insurance for consult last year with her but I don’t think they will authorize again. You know this insurance stuff, it’s an HMO thru the Healthcare system Scott works in as a director of echocardiography and he has a pretty good onc here but really, who knows how many choliongiocarcinoma patients he has had, I think sometimes they group pancreatic and bile duct patients together….even though may be adenocarcinoma still different. Anyway, I still want to pursue that in different directions as far as chemo continually every 14 days.
We have talked with our IR about a 2nd y90, he isn’t against it but he said you can only get maybe 2 and he seems to want to hold off so that if he really needs it he can do another….but still will talk with him AND will definitely consider your Doc, Fred Moslein , we can even get to him easily from where we live in florida and share our images, reports. Also Mary, I read up on your suggestion very helpful….helped to keep all in perspective. One more thing UCLA doing SBRT trial for liver Mets and liver ca….going to talk to them to get more info…..
Thank you again for your excellent information.
Warm regards, pattiGood morning All,
It’s been awhile since I’ve gone on. Just a brief update…my husband dx last June 2016 with nonresectable intrahepatic choliangiocarcinoma. He initial had y90 on large tumor in right lobe and rfa on 4 small satellites on left lobe. July 28, 2016 started gem/cis every 14 days after flying out and talking to Dr Shroff at MD Anderson. July 28 2017 petscan showed no light up, no Mets., no metabolic activity in large tumor! He is up to 27 chemo treatments and his labs, although slightly out of normal range still decent. His afp is 10.0 upper end normal is 8.0 over the last year and recently on mri and cat scan he has had fairly good shrinkage of large tumor but still inoperable.
He still has good appetite and although more tired first few days after chemo still functioning well, working. His interventional radiologist last year had said he has 18 months from diagnosis. That would mean I lose him in February 2018. I pray he is wrong. His foundation one mutations are IDH2 and a couple more that are really uncommon, no clinical trials on them. We know there are trials for IDH1 AND IDH2, I’ve talked with Agios…. I’ve talked to Lisa Crane and Melinda Bachini too, such kind helpful women. For them they were able to have surgery. I’ve read Middlesister and her mom doing well, 3 years out and I believe Patty Cochran too, 6 years and no surgery, am I correct about her?
We are just very grateful for the time, we are still exploring other treatments so that if and when gem/cis stops working we can prepare for a trial or other treatment. Thank you all for your encouraging words, updates and all the information avaliable through this site.Has anyone on our discussion board been treated with IRE, nanoknife? If so, curious has to post recovery and results.
How is keytruda determined as a treatment option? Is it based on certain mutation a patient has? Or is it given off label if gem/cis stops working depending on onc or patient request?
KrisOOj,
Would like to know more of your story. My husband not resectable . On chemo, had y90….you encourage me. If possible can you share more? Thanks so muchHello 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.Also, let me add initially had gone down to slyvester cancer ctr miami fl and they wanted to do chemoembolization as first treatment but due to an insurance snafu we couldn’t go there which we view as it turned out as OK because we ended up with y90 as first line of treatment. We believe the y90 was a big factor in the shrinkage and necrosis of tumor not to say chemo hasn’t been helpful but we’re glad we did it first.
Good morning to you both, middle sister and positivity,
My husband had y90 as his first treatment by his exceptional IR here in south florida in the Healthcare system we have locally and the one my husband also happens to work in. He had it soon after dx which was June 14 2016. His post symptoms after y90 were practically nonexistent and went back to work the day after or 2 days after treatment. After that we flew to MD anderson and consulted with them and followed their protocol for gem/cis which was started july 28th 2016. His 2nd petscan sept 30 showed no light up. 11/3/2016 mri with contrast showed remarkable response with shrinkage to large 10+ cm tumor. 12/21/2016 had 4 phase cat scan and had alittle more shrinkage. He has had 12 chemo treatments every 14 days. He tolerates well, some fatigue about 5th post chemo day then bounces back. Labs good. Good appetite, still working. He still may not be a candidate for surgery but we are grateful for results til now. I am an RN and felt MD Anderson was the right choice because although we are being managed well by our onc here they really didn’t have the experience with choliangiocarcinoma to know exactly what chemo and amount have chemo or schedule to follow. Hope this helps some. BTW, he is 60 yrs old. Also to add, after return from MD Anderson he has 4 satellites smaller than 2.5 cm obliterated with RFA. Post symptoms with that, alittle more uncomfortable.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.
