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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.
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!
Thank you for compiling and curating this blog collection. It is so helpful to have them organized in one place. This helps to show the wealth of knowledge and experience that comes from the Cholangiocarcinoma patient and caregiver experience and I hope that many others will benefit from the information and stories shared by the bloggers. Steve and I also very much appreciate that you have included his blog in the list.
It was lovely to meet you at the conference!
Mary and Catherine:
Thank you both for your kind words and support. I am glad that you like Steve’s blog. I, of course am biased but I do think that he is a gifted writer. The survival stories on this board have inspired us for the past two years and we are glad if in some small way by sharing Steve’s story we can help others.
Dear Lainy, Darla and Catherine,
Thank you for your warm welcome. I will be sure to post updates on how things are going. We are hopeful about the scans that Steve had this week. Last weekend, he was in a lot of pain and we went to the MSKCC Urgent Care on Sunday night. They did a scan then to make sure that there wasn’t a blockage. On Monday, his oncologist reviewed the scans and she and the research study radiologist think that some of the tumors are liquifying. We’ll know more this week when we meet with the oncologist and have the full report form the scans that were done on Wednesday.
I also want to mention that Steve is writing about his experience on his blog, Now Without Hesitation (http://nowwithouthesitation.blogspot.com). I’ll be sure to post the link in the blogs section of the forums as well.
Thank you all again for your warm welcome.