middlesister1
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Lorraine,
Welcome! When I see someone so young inflicted with this disease, it’s even more maddening than the usual. However, wonderful news that they caught it early and you were able to have a successful surgery.If you do opt to go with the chemo, please make sure to read through some other’s experiences and suggestions here. My mother was 73 when she had 3 cycles of GEM/CIS. During the first one the side effects were very hard on her (she was also recovering from aborted resection). However, with adjustments of fluids and meds, the next two were very tolerable for her. She was not like some I’ve read of here who still go for a run or to work during chemo, but still said it really the second two cycles were SO much better.
Best wishes.
CatherineDear Nicola,
I’m sorry to read about your Dad’s condition, but it is good to hear he is not in pain. And, I’m sure he’s thankful to have you there to watch over him. It’s still a bit early in the US, but I think there will be other members who have been in your position and may have better information on the timing and symptoms.
Take care,
CatherineLaura,
One other thought- you didn’t mention where your husband is being treated but I see your home listed as Alexandria. Although we have JHU close by, my mother’s IR at UMD might be worthwhile to contact for a second opinion on Y-90 (Dr. Fred Moeslein). He’s very responsive and I credit him with us be in the position we are today. He even took the time to convince Mom’s ONC at the time that giving the xeloda in conjunction would give us better results (ONC was against it as unproven and could be harmful). I guess only time will tell, but stability for this long seems to indicate he was correct.
Catherine
Laura,
I’m sorry to hear that your husband has been diagnosed with CC, but very happy you found us. I’ll have to look into why I couldn’t get Marion’s link to work (I hope you did- if not let us know).
My mother has had tremendous success with Y-90, but she had one tumor (4×6 cm when started) and no other mets. After 3 cycles of GEM/CIS, she had first treatment in Feb 2014 and second in Nov 2014. Second time she was given xeloda for 2 weeks before and after to help effectiveness of radiation. Main side effect was extreme fatigue. First time fatigue lasted 4 weeks and second time closer to 6. However, since the second treatment scans have shown no viable disease so she is treatment free and goes for periodic scans. We’re hoping her next scan in August still shows no evidence of disease.
Best wishes,
CatherineMeg,
This disease can be overwhelming to the patient and those caregivers/loved ones who face it with them. I hope you get the news that transplant is an option for your Mom.
Let us know how you make out,
CatherineJoe,
Thank you for the wonderful contribution. I’m sure it will help many of our members –
Take care,
CatherineDear Wesley,
A warm welcome to our group. I hope you Mom continues to feel well – gaining weight during chemo is truly great!
Take care,
CatherineDear Brigitte-
We’re all hoping for the scans to show great results. However, although we are here to listen, I think having a counselor to speak to could be a good thing too (even with good results).
Best wishes,
CatherineDaisy,
I don’t have medical advice to offer, but wanted to welcome you to our group. I hope when you get your mother to the hospital (or maybe the cancer center Marion recommended), you can find out further information. One thing with this disease, is the need to try and understand as much as we can. However, it’s very understandable that when you first hear cholangiocarcinoma, most people (and many doctors) do not know much about it.
If you have time, I’d suggest going to our homepage and reading what you can under the newly diagnosed section. It might help you with knowing what questions you want to ask.
http://cholangiocarcinoma.org/newly-dx/
Let us know how you make out.
best wishes,
CatherineDear Jack,
I’m sorry this disease has put you and Diane in this place. I’m glad she’s comfortable, and hope you can still experience some happiness and peace in the time you have together. Just the other day, Pat (Hercules) posted “don’t count the days, but make the days count”. I thought it was a motto to try and live by even for those who may be fortunate enough to have many days left.
My thoughts and prayers are with you and Diane
Catherine
Hi Shelliec,
My mother had the Y-90 done twice- first time in Feb 2014 and then in Nov 2014. The first time it killed much of the tumor, but we then did the second one to try and kill remaining tumor. For the second round, she also took a pill form of chemo (xeloda) two weeks before and after the treatment. They did go through groin, and she was very tired for a bit over a month. However, good news is that after the second treatment all scans came back as showing no evidence of disease. We still are getting scans periodically to see if/when it comes back, but she has been treatment free since Nov 2014 and feeling well.
Best wishes,
CatherineDear Faisal,
I am very sorry to hear of the loss of your beloved father. Your posts told how hard he fought and how you were with him through it all. I’m sure he was thankful to have your love and support through his journey.
Take care of yourself,
CatherineDear Tony,
My heartfelt condolences are with you and your family. I’m happy to hear she was at peace.
You are in my thoughts and prayers,
CatherineDear Tony,
I am so very sorry your wife has been diagnosed with this disease. It breaks my heart when I see people who are so young and especially with young children get diagnosed. Please know that although this is a very horrible disease, it is not hopeless..My mother was closed back up in Nov 2013 during unsuccessful resection and she has had been treatment free for almost 2 years (she had SIRT radiation treatments). Also, there are so many other targeted and clinical trials available even since I joined this board in 2013. Main thing is to make sure your wife is being treated at a center that is familiar with cholangiocarcinoma. You need a major cancer center which can get your wife the best treatment for this disease. We are big fans of second and even third opinions. With my Mom, I truly believe if we had not pushed for other options she might not be here today. This disease is so rare that amazingly sometimes you have to push or find doctors/treatments.
If you haven’t yet. please check out the newly diagnosed section on the main webpage.
http://cholangiocarcinoma.org/newly-dx/
We are here for you.
Catherine
