May 27, 2014 at 11:30 pm #82553marionsModerator
Melinda…fantastic, Melinda. As Lainy mentioned, the Search function will help educate you however; depending on the responses you receive to the questions posed, you may have to repost as some don’t visit this site daily.
MarionMay 27, 2014 at 9:10 pm #82552lainyParticipant
Melinda this is good news! Very good idea for you to look through posts. Above is a search button and just type in what you are looking for and many posts will appear. I always say when one starts a treatment regime the fright turns to fight and YES you have a whole new family here for support, advice and lots of love. Please keep us updated on hubby’s progress and as always we are always here for you!May 27, 2014 at 9:02 pm #82551
Hi all, Just got back from City of Hope where we found out that my husband will start chemo next Wednesday, for 6 months. He will be doing the gem/cis cocktail that many people talk about. They prescribed a few anti nausea drugs since he currently has no appetite. Everything tastes salty to him. He will only be on 25mg of the Cisplatin, and I hear that this is the drug that causes the side effects. I worry about him because he sleeps so much throughout the day, but the surgeon says that is normal as the liver is receiving all the nutrients in order to regenerate. Not that it matters, but does this chemo cocktail cause hair loss? I forgot to ask. They did do an audiological test today as they said that hearing loss is a side effect that they want to closely watch for. Getting the baseline today was great. City of Hope has been wonderful and are aggressive in fighting this horrible cancer. I’m going to go back now and search the boards for effects of chemo and what to expect. I know there are many threads. Just wasn’t sure before today so I never ventured into them.
I really feel that you all are a wonderful safety net and although I don’t know you and have only posted five times now, that you will be there to guide me through this journey and offer support and hope for as long as it takes.
Thank you so much for being here.
God Bless you all,
MelindaMay 21, 2014 at 4:51 pm #82550pfox2100Member
HI and welcome to the site. I too was diagnosed with intrahepatic cholangio and I had my surgery in January and a 13cm as well as a satellite tumor was removed and. They were able to achieve clear margins and no lymph node involvement. I am currently going through adjuvant chemotherapy and I started about 7-8 weeks post op. I hope he continues to have a well recovery and please feel free to ask my any questions.
PorterMay 21, 2014 at 1:54 pm #82545iowagirlMember
I’ve been here just a little longer than you and your husband, but our stories are similar. I had a 5 cm main tumor (left lobe) and a very small satellite tumor was found with intra-abdominal ultrasound. Same deal…clean margin…no mets…no lymph node involvement. Surgery was Feb 28 this year at Mayo/Rochester. I had some incision healing issues that delayed starting chemo, and then after one infusion, I developed blood clots in my lungs and one in my leg (the one in my leg was apparently there before the chemo and signs were missed by the oncologist)…in hospital for one week to get on blood anticoagulants. Today, I’m restarting chemo with a new oncologist here in town. FINALLY. Looks like your husband and I will be going forward with this… about the same time table from here on out. Is your husband going to get Gemcitibine and Cisplatin for his chemo? What was your husband’s staging ….mine was T2b because of finding that one extra tumor. Interesting…your doctors refer to it as a satellite tumor, but my surgeon corrected me and called it a “sister” tumor….meaning it arose from the same problem that caused the first one….and not because it necessarily seeded. The oncologist was also quick to correct that the small, extra tumor was not necessarily from seeding. That said…both recommended this adjuvant chemo….the surgeon VERY strongly (quote “We don’t do this surgery without you doing chemo.” ACK!!!…and the oncologist more gently, but definite that is what he’d do for his own family. As to the fear/fright….I’m not quite “there” yet….there being the fight mode 100% of the time. Give yourself some time to let this soak in and grieve for what’s been thrown at you before you start changing to the fight mode all the way. If you find that people won’t let you do that…then come here. I’ve found the most compassionate and understanding people here….we all deal with the same underlying issue. We, or a loved one, have been thrown the biggest curve ball of the game and the game looks rigged to boot. That said….the one thing my first local oncologist (the one I fired) said to me that I took away from meeting him, was that the ONLY statistic that matters is the one associated with YOU. The rest belong to someone else and are not YOUR story.
Julie T.May 21, 2014 at 5:13 am #82549lisacraineParticipant
Welcome to this beautiful group of friends and supporters. So happy to read your husband was a surgical candidate. Please tell him to take recovery slow and rest.
LisaMay 21, 2014 at 4:52 am #82548lainyParticipant
Dear Melinda, I want to welcome you to the best place to be for cc support! We LOVE the words surgery and stable! And we LOVE our Dr. Fong! It sounds like you indeed did find your right place for treatment and I am happy the Surgeons were aggressive as Surgery is the best cure. Yes this is a very scary journey or as we call it a roller coaster ride. BUT there is hope and miracles here as well. Keep a good attitude, take one day at a time and you WILL get through this. The beginning is rough but soon the fight will over take the fright. We are all here for you, we are one BIG family. Please keep us posted on your husbands progress as we really care.May 21, 2014 at 4:32 am #82547kvollandParticipant
Resection and surgery. Those are the best words to hear. Welcome to the best little family in the world. We also refer to this as a roller coaster ride and we have all found the ups and downs of that ride.
My husband had a resection a year ago on June 4th and we have finished 6 months of Chemo (gemzar and oxaliplatin) in January and finished 5 (well turned out to 6 weeks after a 1 week break) of IMRT with a continuous infusion of 5FU. That was a little rough.
Good luck with everything and keep us posted on how things are going. Remember we are here for questions and just to vent if you need it.
KrisVMay 21, 2014 at 4:31 am #82546
Snowbird, Dr. Fong came to City of Hope on April 1 but is unable to perform actual surgeries until his license is approved. He was, however, in on the discussion with the Tumor Board and also had a 1:1 with Dr. Singh who performed my husband’s surgery. Dr. Singh is currently the interim Chief of Surgery and Dr. Fong will take over shortly. We were very fortunate that COH and Dr. Singh got things done STAT and as he said yesterday, using a “full court press”.May 21, 2014 at 4:07 am #82544lulu07Participant
Wow this is awesome news,,,i to had 2 ok maybe 3 surgeries in the last 4 years…hope springs eternal definitely believe that….was told in 2009 I had 6 months to 1 year to live…. I don’t want to say live,,,find another option and i did
looks like you were vey aggressive also…have to be..Prayers to you and your family because I also believe in miracles…they have happened…
NancyMay 21, 2014 at 3:52 am #82543snowbirdMember
Wow! That’s awesome that your husband was able to have surgery! It is the only way to cure CC so he is very fortunate! Was Dr. Fong one of the surgeons? I understand that he went to COH from Memorial Sloan Kettering in NY. He has a lot of experience with CC. At any rate, I pray for a speedy recovery and only good news in the future for your husband.May 21, 2014 at 3:20 am #10047
Hello all, as many others have previously posted, I am glad that I found your site, yet wish it were under other terms. My husband was diagnosed with intrahepatic cc on April 18 and had 55% of his liver resected on May 2nd at City of Hope in Duarte, CA. The surgeon, hospital and staff have been nothing but confident, friendly and hopeful as we begin our journey. The primary tumor was about 8cm and they did find a satellite tumor when they went in to take a peak prior to surgery. The surgeon decided to perform the open surgery instead of closing him up. Margins and lymph nodes were clear and we will now begin a regimen of chemo next week. I have to tell you, this is scary stuff. I find myself going from hopeful to hopeless in his diagnosis and treatment. I know that many of you are long term survivors. God Bless you for sharing your stories of strength and winning your battle. My heart goes out to the families who have lost the battle with cc. I can only put my faith in the remarkable team of surgeons at COH, their positive attitudes and aggressive course of treatment. Not much more to say, but thank you all for sharing your hearts and your stories so that the rest of us can be informed and stay hopeful.
God Bless you all.
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