lung metastasis

Dear all,

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?

Best wishes

Nick

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,
Val

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.

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!

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.
Hugs,
Marion

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!!

Sally
I will be praying for your sisters surgery. Best wishes.
Lisa