Hello From Mississippi!!! (Page 1 of 2)

Brenda:

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.

Hugs,
Margaret

Brenda,
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.
Regards,
Roni

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".

Hi,
I am sorry to hear about your husband's case.
If you have specific questions about  your husband'case;do not hesitate to ask.
I will also consider "quality of life" vs "quantity of life" at this time when you will be making decisions down the road.
chemotherapy has its limitations and may not offer the best treatment plans for this disease.  Tesatexol & Xeloda is relatively tough on patients.
Have you had any 2nd opinion especially on radiation intervention possibility even the tumor is mets to the lungs?
God bless.

Brenda, this may seem weird, but I am so glad you are discussing things openly. That is so good and some people just cannot do that. In the end to chemo or not is a huge decision. When the ONC suggested Palliative chemo for Teddy near the end Teddy asked him,  "How much time will that buy me?" When the ONC said a month Teddy opted for no chemo but wanted quality. It is always a big decision to make, whether to chemo or not and I just left him alone to ponder his decision, which by the way I was happy with. Teddy was also on Morphine. Guess you have to wait to hear from the 'other' Doctor.
Brenda, Know what? It doesn't matter how much or how little money one has as the most important thing is to make good memories and there is no amount of money that can do that for anyone. We make our own memories and no one can take those away from us.

Hi,
To be more specific for radiation intervention consultation:
1. I will ask for opinion about Radioembolization or RFA for intra- hepatic cholangiocarcinoma(CCA).
2.for extra-hepetic CCA,I will ask for IBRT,cyberknife.
It all depends on where the CCA is in or out of the liver.
good luck.
I will also ask the pain doctor for morphine  oral solution for break through pain.
I will also start to prepare things just in case.

God bless.

The Radiation Oncologist showed us the last CT scan from April 10th...showed only a small section of the liver on the left side was NOT covered with cancer. It showed the bone cancer was at T-3, T-4 & T-10 but when he did the full body scan last Thursday, he couldn't find the spot on T-10. The dr said he could zap the liver but it would kill the whole liver.

I had ordered the bracelets & have passed them out to friends & they have passed them out to their customers @ work. Every time someone new sees my bracelet they asked what it's for. I tell them that this is the cancer that my husband has. I've only had 2 people who knew what this cancer was.

Dear Brenda,

I am really sorry to hear about your husband. You seem like such a sweet lady. I hope your husband can find some relief from his pain. It is so hard to watch someone you love go through so much. We are here for you if you need us. God bless your family.

Love, -Pam

@Pamela: Thank you for saying that when you dont know me! And Thank you everyone for the support! This weekend has been rough. Don's oldest sister came to visit and he was only able to sit with her for about 10 minutes....he had to return to bed. He's been sleeping sitting up because of his pain which is only a few minutes at a time. He had tried to lay down but too much pain. We go back to the dr tomorrow. He's suppose to receive an IV of Iron and see the dr.
I told his sister of his wishes of DNR and she said that was all she needed to know...if he was fine with that, then so will everyone else.
He told me tonight that he cant take much more pain ...that the dr has to do something tomorrow to help him.
I'm usually a strong person but I have done nothing but cry since his sister left. When she got ready to leave she promised to be back this weekend or the next. I told her she didnt have to do it ..she lives 3 hrs away and the drive is rough on her. She told me that he's her baby brother & it's not suppose to be like this...she's suppose to go first. She took care of him & the other 4 while growing up because their mom was supporting them working 4 jobs. He is the next to the baby.
Goodnite everyone!!! Again thanks for the support!!!

The past 8 days have been kinda busy. My hubby had appointment with the oncologist which we FINALLY got the answer about zapping his liver. Of course it was NO just like the time before when the dr mentioned doing it. Don started his appointment with the radiation oncology to get radiation on his spine to help with the pain in his back. He started on May 2nd and is scheduled for 10 days . He's had 4 treatments now ...didnt make it yesterday and I'm not sure about today's appointment. He is very jaundice & very weak. Having trouble walking more than a few steps at a time. We having been working on get his WILL and DNR finished...now to get it notarized. He's now drinking Pedisure since the Special K's protein drink are too think for him to swallow.
He ate a few bites of dinner last night which I consider very good. Has appointment with his oncologist on May 23rd. This will be the longest he's gone without seeing the dr. Still not sleeping much...too much pain.

Brenda...the pain can be controlled. In the numerous postings regarding bone pain these medications have been mentioned:  Dilaudid, Fentanyl patch, synthetic methadone, morphine with Hydromorphone for breakthrough pain, Oxycontin and Oxycodone, Zometa.  It is important to stay “on top of the pain” meaning that the medications must be taken regularly.  Please, speak to your husband’s doctor about pain control. 
My heart is with you,
Hugs,
Marion