September 24, 2018 at 12:41 pm #97560bglassModerator
Thank you for the update and for sharing Steven’s good scan news. Hopefully his side effects will resolve with time.
Your observation on how treatment options for cholangiocarcinoma are quickly evolving is important. It highlights the benefit of seeking opinions and treatment advice from a major cancer hospital.
Regards, MarySeptember 23, 2018 at 7:05 pm #97556
I am writing with an update on my husband Steve, who was diagnosed with ICC, stage 4, multiple, inoperable tumors in his liver in November 2015. Since December 2015, he has had a variety of chemo treatments both systemic and through the hepatic arterial infusion pump. This past summer he received external beam radiation at MSK with a dosing and technique that they use at few places, the ones we know of are, MSK, MD Anderson and Mass General. Along with the radiation, he took xeloda. I am very pleased to share with you news that three years ago, I did not think would be possible. Steve had a CT and a PET scan two weeks ago and the scans show that his tumors have shrunk but perhaps, more significantly, the PET shows that the tumors are not active!
We are very pleased by this news, as is his medical team. He has been dealing with some pretty significant side effects: extreme fatigue and high ammonia levels. His medical team at MSK is monitoring the side effects carefully. He will have another scan in 2-3 months. We know that we need to be vigilant and that this evil cancer can return at any time.
I hope that our good news can give others hope. Many of you know that Steve is blogging about his experience with Cholangiocarcinoma and I will share the link again in case anyone is interested in reading more: http://nowwithouthesitation.blogspot.com
We do hope that you find Steve’s story to be a story of hope no matter where you, or your loved one is in their Cholangiocarcinoma journey. In the early days of Steve’s diagnosis, I sought out and found great comfort in the patient stories that showed one could live this this awful cancer and I hope that as we approach the three year mark of Steve’s diagnosis, his story can do the same for others. As has been said so many times before, it is so important to seek out a major cancer center for treatment. Additionally, keep looking for new developments in treatment; follow the science. The radiation regime that Steve received this summer was not an option when he was diagnosed. We attended the Cholangiocarcinoma Foundation conferences, digested the scientific literature and followed the new developments and talked with his medical team about the science and the options that it might afford him. In doing so, we signaled that we wanted to explore and access all possible options. Finally, the community and support offered by this group has been an invaluable gift. From the support and encouragement to the sharing of experiences and information, being part of this community has help us in so many immeasurable ways. Thank you all.July 3, 2018 at 7:30 pm #97222
Thank you Gavin and Billy for your good wishes and thank you Billy for the heads up to be vigilant in monitoring side effects. This is very good to know. I will be sure to post updates on Steve’s progress through treatment and post treatment!July 3, 2018 at 10:06 am #97220gavinModerator
Thanks for the update on Steve and please, no apologies are ever needed around here for the length of any posts! Go back over some of my earliest posts and some of them were like short stories here!
You guys sure have been through a lot and having to fight appeals as well to get the treatment, big grrrrr to having to do that but great news that you were successful and that Steve has been able to start the treatments now. My fingers are crossed for this to work as best as possible and please keep us updated on how things go. Real glad to hear that Steve is tolerating the treatment well and go kick some butt!
My best to you both,
GavinJuly 2, 2018 at 6:49 pm #97216vtkbParticipant
Good luck to Steve! I would warn you to just stay on top of any symptoms/side effects Steve may be feeling during treatment- Kathy got sick (meningitis- def rare but happened due to her weakened state) and we almost ignored it when she was getting radiation bc we just figured it was a normal side effect of the radiation. Everyone told us the side effects get worse as the radiation accumulates with each treatment. I hope your insurance doesnt give you any issues in the future- we use Horizon and other than a delay in getting approved for a biopsy to get diagnosed everything else has been covered without any issues or delays at MSK by them.July 2, 2018 at 3:06 pm #97215
I’m writing with an update on Steve. Apologies in advance for the long post, a lot has happened in the past few months! As always, Steve is writing about his experience on his blog, where he is much more articulate and goes into more detail: http://nowwithouthesitation.blogspot.com
Steve was diagnosed in November 2015 with stage 4, inoperable intrahepatic cholangiocarcinoma. He has multiple tumors in his liver and fortunately, he has not developed metastasis outside of the liver. In April, Steve had a scan and we learned that his tumors had become chemo resistant. As can be expected, this was distressing news. He has had genetic testing but alas, no targetable mutations, so our options are limited. His oncologist at MSK consulted with her radiation colleagues and Steve was considered a good candidate for Y-90. He had a PET scan that showed that the main tumor is inactive but that there are 4 active satellite tumors, which could be targeted with radiation. The interventional radiologist felt that he could do the Y-90 procedure and target these 4 tumors with promising results. Unfortunately, during the mapping procedure, they found that Steve has a higher than usual set of vascular connections between the liver and lungs and it would not be safe to proceed with the Y-90.
He was then referred to a radiation oncologist at MSK who felt that Steve would be a good candidate for Stereotactic Body Radiation Therapy (SBRT), also called Ablative Image Guided IMRT, to not only control the active tumors but also to hopefully, get them small enough for ablation. On the days that he receives radiation, he is also taking Xeloda. His team sees a benefit for doing radiation and chemo at the same time.
We were prepared for Steve to begin SBRT when we were stopped by our insurance company and their denial of coverage for the procedure. With the help of the medical team at MSK, three appeals were filed, including one for external review by the state of NY and fortunately, the third and final appeal was decided in our favor and Steve has now had 7 of 15 radiation treatments. His treatment was delayed by they 9 days it took to fight for insurance approval. So far, he is tolerating the treatment well.
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