April 26, 2012 at 6:46 am #60185brenda1962Participant
Thanks everyone for the warm welcome!
All of this started July 2011, for the 1st two weeks my husband complained of headaches, belching & pain in the upper stomach area. Finally I talked him into seeing a dr on July 20th and he was diagnosed with High blood pressure & heart was racing. The dr called an ambulance & he was taken to the ER. Once there drs ordered x-rays & tons of blood work. After about 5 hrs he was admitted to a room & we were told “All blood work showed was Liver enzymes were .2 above normal. An hr & 1/2 later CT & ultrasound was performed…heart dr came in & said “Apparently you’ve had a heart attack”. More test were ran up until midnite.
The next day oncology dr came by & told us that Don had cancer. CT showed spots on liver & lungs. He was then scoped up one end & down the other to see if any other problems. Was told he also has acid reflux & hiatal hernia. then by noon, heart test was done & showed needed 2 stents in heart. That was put on hold til a biopsy could be done on the liver.
Don was in the hospital July 20th-26th , we even celebrated our daughter’s 23rd bday at the hospital. He was sent home with follow-up @ the West Clinic (Cancer Clinic) in town.
His appt was Aug 3rd…had MRI & was waiting to have liver biopsy but the dr decided to do it with a lymph node in his neck that was swollen. Said he didnt want the hubby to have to indur more pain that wasn’t necessary. Results 5 days later showed no clue as to where cancer started….so more test was going to be done. While waiting for those results ,hubby had the port put in and the 2 stents in his heart.
On Aug 18th, we were told the tests showed cancer started in the liver & spread to the lungs. Cancer was called “Cholangiocarcinoma and we needed to start paperwork for disability because he would never work again.” Forgot to mention that Don is 54 years old.The dr asked if we had questions & I asked him what stage of cancer. His response was “I don’t want to tell you…it’s Stage IV”. He said I must have known what stage because I was asking a lot of questions…that I must have been looking it up. Then he said “I REFUSE TO SAY HOW LONG YOU HAVE TO LIVE”.
Before leaving a plan of treatment was scheduled & then scheduled for stents & portacath to be put in.
On Aug 31st, chemo was started with cisplatin & gemcitabine once a week for 2 weeks then off a week…this would go for 12 times. On the 5th time of treatment CT was done…showed everything was the same. Treatments continued til the 9th one ,CT showed lung spots smaller…liver the same & a spot on spine. While all this is going on, I’m at the hospital w/our 15 yo…kidney stones. It seemed like our lives were falling apart at the seams. Hubby was only able to do total of 11 treatments because of low blood counts. Last treatment was on Dec 21,2011.
Now it’s a new yr, on Jan 11th…CT showed spots on lungs were back & liver the same. It was discussed w/us about hubby going on a Trial study. We talked w/dr & our kids, decided to do it. He was put on Tesatexol & Xeloda. Did fine until almost finishing the 2nd bottle of Xeloda…had a reaction to it. Feet & hands swelled to the point of not being able to walk or hold anything…also in alot of pain. Treatment was stopped on Mar 9th.
Sorry this is so long…didn’t realize it was so late. Will write more tomorrow after getting some sleep.
Thanks for “listening”.April 25, 2012 at 6:01 pm #60184gavinModerator
Welcome to the site. Sorry that you had to find us all and I’m sorry to hear about your husband. But I am glad that you have joined us all as you have come to the best place for support and help, and you will get tons of both from all of us here.
And please, no apologies are needed for the length of your post! You go ahead and post away as much as you want to! Come here as well to vent, shout and scream if it will help. We know what you are going through and we care. And if you have any questions then ask away and we’ll do what we can to help in answering them for you.
My best wishes to you and Don,
GavinApril 25, 2012 at 4:46 pm #60183ronidinkesMember
Welcome to our family. We are here for you anytime. My mother was diagnosed August 2010, and just passed this March 17, 2012. Be positive and follow you gut. Be strong and sending much love your way.
RoniApril 25, 2012 at 1:33 pm #60182lainyParticipant
Dear Brenda, welcome to our extraordinary family but sorry you had to find us. As it was said above here, knowledge is powerful in fighting CC and 2nd and 3rd opinions are highly suggested. You want to ask the ONC how many cases he has treated if any. I am not sure what you mean by the Doctor back tracking. Most important is the patients comfort, is your husband in pain? What kind of treatment is he being given? We have some Stage3 IV patients who have done pretty well by being with the right doctor. Please see if you can find out some answers and don’t worry about a lengthy post yours was just fine.April 25, 2012 at 11:48 am #60181mlepp0416Participant
Welcome to your new family. You will find a lot of support from members of this site. Feel free to ask any questions, rant and rave, cry, laugh, etc. We are a very great group of people. Many of us have been through a lot with our loved ones and have a lot of knowledge about CC that we have gained through personal experiences, trial and error, etc. We love to share information that we have gained!
My thoughts and prayers are with you and your family. Be sure to ask a lot of questions, make sure your husband’s doctors have experience with CC. Take a recorder along with you when you go to doctor’s appts, etc. Because then you can play it back and re-listen to it. Write down your questions and make sure that you get answers to them, or if the doctor cannot answer them, then request that he find the answer! Don’t be afraid to question things that they are doing. The more informed you are the better! Never take no for an answer, make them think outside the box.
MargaretApril 25, 2012 at 7:34 am #60180marionsModerator
Dear Brenda….welcome to our place – the one no one wants to belong to, but is glad to have found. Diagnoses of this cancer are difficult to obtain and it almost, always demands a second opinion from a physician/center “very” familiar with this disease.
Brenda, is possible for you to obtain another opinion from a major cancer center?
As things become clearer you will find yourself empowered with knowledge and strength.
Hang in there. Others will come around real soon and share their thoughts with you.
MarionApril 25, 2012 at 6:18 am #6708brenda1962Participant
My name is Brenda and found this site by looking up the type of cancer that my husband, Don has. We have been together since he was 22 & I was 16. We have 3 children…son 24 1/2, daughter 23 1/2 and our baby son will be 16 in 3 days. We had just celebrated our 25th wedding anniversary and 2 months later,he was diagnosed with CC on July 20, 2011. Doctor told us in August 2011 that it was Stage IV. He has lost about 90 lbs in the last 9 months. We are about ready to explode since the dr is now back tracking on things he has told us….as if he never said it. Just found out he also has cancer of the spine: T 3,4 & 10. Sorry this is long
Thanks for letting me share.
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