June 2, 2014 at 6:04 pm #81585lainyParticipant
Dear Nickk, welcome to the best place t be for CC support. I am sorry to read about your Mother and my first suggestion would be getting another opinion as it is very important with CC. If the chemo combo is not working that can be changed. My husband had Cyber Knife but he did not have METS rather his CC kept returning to the same place. I know that there can be only so many METS for C.K. but sorry can’t remember the Max number. His CC just kept returning to the same place. C.K. is terrific if it can be used. The main tumor must be under 6CM which hers is. We do have members with METS that were helped by just a change of chemo. Wishing you and your Mother the very best and please keep us posted as we truly care. Oh, just a suggestion that you might want to put this first post of yours under Introductions so that it doesn’t get losty in these longer threads.June 2, 2014 at 5:25 pm #81584nickkParticipant
First of all may I just say that it is very reassuring for me to have found this forum.
My mother is a 64 year old lady with a history of cholangiocarcinoma (<1cm in size), originally diagnosed and surgically resected in 2010.
The tumour has recurred 2013 with 12 lung metastatic nodules 0.5-1.5 mm) in size.
She has been since then on chemo 9 cycles of Gemzar/Cisplatin and currently on 5FU. She is in excellent clinical and psychological condition but CT scan shows every 3 months tumor growth of about 10-20%.
Does any of you have any ideas/experience on further treatment schemes?
Has anyone tried Cyberknife for multiple lesions?
Does anyone have experience with dendritic cells treatment?
NickMay 28, 2014 at 5:17 am #81583
thank you again valwong. your insight is very helpful and i am going to pass the information to my sister so she can talk to her drsMay 28, 2014 at 1:11 am #81582valwongMember
Sally, we tried chemo for around 3 months, my dad had dry skin and skin rash, but did not have hair loss and other side effects. I was told that if you get the side effects it means the chemo is working. However the best option to confirm is the scans. My dad’s CA19-9 never went above 30 even before the surgeries, so blood scan was not an option and his ONC used CT Scans to confirm if the meds were working. The tumors did not grow but did not shrink either during those 3 months. That’s what prompted us to explore the option of radiation. It worked to control the growth of the tumors because it’s targeted. And there’s no side effects, at least my dad did not feel any. Our ONC told us that radiation is the only thing guaranteed (after surgery of course) to control the tumors. However the tumors have to be of certain size and there can’t be too many of them. Basically the parts of body that receive radiation would “die”, so as you imagine you can’t do it on too large an area of the lungs. After radiation, my dad was able to hike and do sports again. We even went on 2 holidays abroad. That is, until he had bone mets now.
Our experience with chemo is not that great, so I might be biased here. But you would know by now that chemo is not 100% and really affects the quality of life. The downside with radiation is it doesn’t attack the root of the problems, and there still might be more metastasis in the future. However, if cost is not a concern, I think it’s worth taking the chance and tackle the tumor as it appears.
Sending loads of love to your family from HongKong,
ValMay 27, 2014 at 1:16 pm #81581
thank you valwong. your fathers case seems similar to my sister. i have concerns about the chemo treatment they want her to take. it is very strong and they dont know if it will help. how long did you try chemo before switching to radiation? was the radiation effective at keeping the tumors from growing?
thank you again for the advice. we are looking for a third opinion now. she really doesnt want to go thru chemo again.May 27, 2014 at 6:42 am #81580valwongMember
My dad had mets in his lungs almost 2 years after a successful removal of an intrahepatic cc. There were 3 mets in the lower lobes of both his lungs, and 1 was removed in a microscopic surgery and confirmed to be metastatic cc. He went through Oxaliplatin, Xeloda, Erbitux (no KRAS mutation), Gemzar and Tarceva but none of them helped. As the tumors were small (5mm) we went with radiation late last year and had another 6months of very good quality time until the mets got to his bones this March.
If anything is to be learnt from this, I would recommend seeking 2nd or even 3rd opinion if you can. For my dad’s case, we would have gone with radiation rather than chemo to begin with as the chemo really took a toll on his overall health conditions. Our first ONC did not offer that, and the surgeons on his liver and his long both sworn by chemo. We switched to a different ONC late last year. It might be the case in HK but at private practices, doctors might make recommendations for commercial reasons.May 22, 2014 at 1:37 am #81579
Sally….genomic testing comes in numerous forms anywhere from simple to quite extensive. I am not advocating for Foundation One, but am wondering how the testing was performed for your sister.
MarionMay 21, 2014 at 10:31 pm #81578
thank you all for the encouragement and advice. i am not familiar with foundation one. my sister is being treated at UPenn. we have also been working with fox chase. it was fox chase that said she has a mcl 1 mutation and to look for clinical trials dealing with that type of mutation. still no luck but i keep searching. i will look more into foundation one and see if they can help. thank you kris!May 21, 2014 at 7:40 pm #81577kris00jParticipant
Sally, good luck to your sister. I’m not sure where she is going now for treatment? If they did genomic sequencing through Foundation One, the last page shows any possible trials or treatments based on the sequencing.
If not, look broader for just the mutation on the trial links. There may be trials for another form of cancer with the same sequencing.
I hope cyber knife or surgery can kick cc’s butt for her, but alternatives are a good thing to research ahead of time.May 20, 2014 at 11:07 pm #81576
sally…..I recall a patient with numerous wedge surgeries due to CC. He was able to control everything else except the lung metastases. This cancer reminds me of a fire with consistent flair-ups.
MarionMay 20, 2014 at 10:53 pm #81575lainyParticipant
Aw, Sally, thank you for the update, wish it was a whole lot better. Yes, cc has a mind of it’s own, unfortunately. I have decided NOT to capitalize it anymore as it doesn’t deserve that respect. Call it my tiny campaign against it. I do know we have had members on here with lung Mets that were helped with Chemo. Sending you my best and you know the drill…..please keep us updated.May 20, 2014 at 10:34 pm #81574
thank you for the good wishes! the doctor did remove one of the tumors and the preliminary report is that it is cholangiocarcinoma. not a big surprise but now the question is what to do next. he said there are other small spots on her lungs. they are not sure if they are cancer too. she still has a tumor in the other lung. the surgeon and oncologist are going to meet. they may decide to remove the other tumor or they may say to do chemo. i don’t really know what to hope for anymore. as i said before, this is her 4th surgery and every time they remove it from one place it comes back someplace else. it won’t just go away!!May 19, 2014 at 11:54 pm #81573
Sally…. Sending a tidal wave of good wishes your sister’s way. Please keep us posted.
MarionMay 19, 2014 at 11:34 pm #81572lisacraineParticipant
I will be praying for your sisters surgery. Best wishes.
LisaMay 19, 2014 at 2:47 pm #81571willowParticipant
Hang in there. Best to your sister as she goes through yet another surgery. I’m sure you’re anxious to know if it is cc and what the next step is. Would be nice to just be able to remove and be done with it,though cc is so tricky as you know.
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