January 29, 2016 at 2:21 am #91206pfox2100Member
Sherry, I too was mis diagnosed with a liver hemangioma in 2009! Didn’t get a confirm diagnosis of ICC until 2013. I went to the ER for pain thinking mine had burst as they told me this could be a possibility because it was quite large. The ED doc looked at me and said I don’t think this is what you have, and things moved pretty fast from there. It sounds like they caught it fairly early being diagnosed with Stage 1, i feel like we don’t hear of that very often as many of us are diagnosed at later stages. I am glad he was able to have the resection and surgery and hope things continue to head in the right direction! Prayers and good luck to you all!
PorterJanuary 13, 2016 at 2:57 am #91205lainyParticipant
Sherry after my Teddy had his Whipple Surgery he had continuous hiccups so bad they just drained him and this went on for 3 months. No one and nothing helped. Finally we met a Pharmacist who recommended Brioske (SP). It is over the counter and usually in a blue container. It looks like alka Seltzer but is an old Italian remedy. After 3 months and no help, ONE, that’s ONE dose and he never had hiccups again. We continued to keep it in the house as it also worked well for upset stomachs. For nutrition you might try Carnation Instant Breakfast. Teddy like that one best and I would buy the vanilla and blend in a banana. It can take the place of a meal or have it with a meal. It was actually Home Hospice that recommended it. Also I found that comfort food worked well. Omelets and add some cheese, homemade soups. Pastas, Mac N Cheese……you get the idea. Instead of large meals have him graze all day on small portions. The eating habits and taste for food really does change. Best of luck on everything.January 13, 2016 at 12:38 am #91202
Sherry…..my husband as well as many others reported hiccups related to Gemzar. My husband responded well to a teaspoon of sugar, but I think there are remedies as well. As always, some people do well whereas others don’t, but it’s worth a try.
MarionJanuary 13, 2016 at 12:23 am #91201
Chemo drugs are Gemzar and ambraxine.January 12, 2016 at 11:38 pm #91204
Sherry….is your husband treated with Gemzar, Gemzar and Cisplatin, or Xeloda?
MarionJanuary 12, 2016 at 11:23 pm #91203
My husband is being treated locally in Appleton by Dr Goggins. Hair loss happened within the first month. In his second month he developed severe acne. His appetite is very poor. He also has a very hard time sleeping. They are jogging medicines to combat side effects. Most recently he had the worst case of hiccups. They lasted 48 hours. I’m wondering what will come next. I mostly look forward to April when this bout of chemo will end. I’m also trying to come up with things he c’s eat….a diet of fruit and pudding just isn’t allowing him to hold his weight.January 12, 2016 at 9:09 pm #91200
Sherry……I would like to follow Lainy in welcoming you to our board and congratulate you on stage I diagnoses and successful tumor resection granting for excellent long term prognosis. Fantastic news not only for you, but for the entire patient community as well. So thrilled for you.
The strengths of this board is rooted in patient experience and the generous sharing of information, hence I expect someone to engage with you in regards to the troubling side effects of current treatment. In the meantime though you might find some answers on “Side effect” thread on our site: http://www.cholangiocarcinoma.org/punbb/viewforum.php?id=45
Again, thanks for joining in. We are in this together and look look forward to continuous conversations among our members.
MarionJanuary 12, 2016 at 7:29 pm #91199darlaParticipant
Glad you found this site and were able to post, but sorry you had a reason to. You have come to the right place for help, support and information. Yes, a diagnosis of CC is very life changing for all.
It sounds like everything is going well at this point except for the side effects which hopefully will be taken care of soon. There have been so many advances in treatment of this disease in the past several years and the fact that his was diagnosed Stage 1 is very positive.
I’m located in Plymouth, WI which is not all that far from you.
Look forward to hearing how he is doing.
DarlaJanuary 12, 2016 at 5:47 pm #91198lainyParticipant
Welcome, Sherry, to our remarkable family and the best place to be for CC support. First of all CONGRATULATIONS that your husband was able to have surgery, surgery is one of our favorite words! Yes, CC is extremely life changing! I have to ask if hubby’s ONC is aware of all his side effects as there are things that can help.
I am from Milwaukee, now in Phoenix and am wondering where he is being treated. I am glad you gave us a second try and it worked! Below is a site you may find helpful and please do keep us updated on your husband’s progress!January 12, 2016 at 5:16 pm #12042
Hello. Found this site a while ago, wasn’t able to post . . . but I’m trying again. I’ve read a lot of posts and I want to thank you . . . . for being here. My husband was diagnosed after doctors found a hemangeoma on his liver about a year ago. They thought it was nothing serious because it reacted favorably to antibiotics . After one year it grew substantially and they referred to a liver specialist who took out the tumor as well as half of his liver. They put him at Stage 1 for Cholangiocarcinoma and he is currently in his 3rd month of chemotherapy. He is having a lot of side effects from the chemotherapy. He is 51 years old and this is . . . .life changing. I just wanted to take a minute to see if this posts! lol and to say hi and thank you for being there . . . . reading your posts helps immensely.
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