Topic: Hello From Mississippi!!!

Hello everyone,
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.

Re: Hello From Mississippi!!!

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.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Hello From Mississippi!!!

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

Re: Hello From Mississippi!!!

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.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Hello From Mississippi!!!

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

Re: Hello From Mississippi!!!

Hi Brenda,

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,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Hello From Mississippi!!!

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".

Re: Hello From Mississippi!!!

Dear Brenda, just curious, have you thought about getting another opinion? Perhaps a different chemo cocktail would be better? I am just going on the fact that the chemo was starting to work if spots were decreasing. I was actually comfortable with the ONC not wanting to give a time frame for life as we don't like to listen to them since they are usually not right. None of us were born with expiration dates stamped on our feet. Looking forward to hearing more. Be strong!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Hello From Mississippi!!!

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.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Hello From Mississippi!!!

Hello
Hope everyone is having a good day!
Doctor did another CT scan after stopping the Xeloda & it showed that everything had tripled in size.
We had planned for my hubby, Don, to start on another Trial Study but his liver enzymes kept changing. One day the numbers would be good and on the day of starting they would be too high. So the research drs said NO.
So at the next dr appt, the hubby mention that his back was very painful. Dr stated "Well I told you there were spots on your spine but I don't know if your pain is coming from them or the liver."
He then mention again about zapping the liver but had told us months earlier that the radiation person said it wouldn't work.
On April 18th, he was referred to radiation oncology where a full body scan was performed. We are still waiting on those results...to see if the spine can be zapped. This dr told us more & showed us more on the scan from the very beginning. He even asked  "Are you going back to the 1st treatment since it was holding everything at bay?"
We asked the reg dr that on Monday & he said he didnt think it will work but we could try again after getting liver zapped. Thsis is when my hubby said "Will you said it was keeping it the same before starting the Trial drugs." The the dr said "NO NOTHING WAS KEEPING IT @ BAY...IT ALWAYS WAS GROWING." But looking @ all the scans with the other dr...showed it wasn't growing. So now...
All records have been sent to a dr @ the hospital & we are on hold again WAITING. The last two days have been rough on my husband. He's in a lot more pain & told me that he can tell it's worse. He can feel it. I called the dr about his pain & they are increasing his Time-release Morphine to 60 mg twice a day.

"I will also consider "quality of life" vs "quantity of life" at this time when you will be making decisions down the road" .... we have been discussion this a lot. His oldest sister will be visiting this weekend & I will be talking to her about it too.
Yep we didnt ask for a time frame as to how long we may have left with him. His heart dr & oncologist both told us from the beginning 
"TO LIVE EACH DAY AS IT'S YOUR LAST...DO WHATEVER YOU WANT TO DO."
Which is hard to do when you get a disability check that barely covers our bills...but we get by okay.

Re: Hello From Mississippi!!!

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.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Hello From Mississippi!!!

Brenda...metastases to spine is not a rare occurrence with this cancer. Our JeffG had posted extensively on this subject and the pain control:
http://www.cholangiocarcinoma.org/punbb … hp?id=1527
I am sending good wishes your way,
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Hello From Mississippi!!!

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.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Hello From Mississippi!!!

We have always discussed  things openly with each other. I guess that is why we are still together after almost 33 years... both very hard-headed...lol.
He started out taking Morphine 15mg twice a day. As the pain increases he was put on 30 mg twice a day with short-acting Morphine 15 mg every 4 hrs. Less than a month ago he was put on 30mg Morphine 3 times a day with the 15mg Morphine still every 4 hrs.
Now he's at Morphine 60 mg twice a day with the 15 mg short acting  every 4 hrs. He goes back on Monday so we are hoping the meds will ease the pain. He sleeps sitting up with pillows all around him because when he lays down his back hurt really bad.
He hasn't been eating much the last few days but I am making sure he was fluids & tries to drink the Special K protein drinks. A lot of the foods he use to eat irritate his throat & hernia.
We also have a 3 year old grandson who LOVES his PopPop to death. Every time he sees him...."PopPop, I have to give you a kiss." He goes over to his granddaddy and raises his shirt & kisses Don's right side. It makes me cry every time he does it.

Re: Hello From Mississippi!!!

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.

Re: Hello From Mississippi!!!

Hi,
If there is less than 20% of good liver left,i will not do anything including chemo clinical trial unless you really want to do so.
Enjoy each day to the fullest.
and forgive  for my honest opinion.
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Hello From Mississippi!!!

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

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: Hello From Mississippi!!!

Brenda...know that you have a tons of support and love coming your way.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Hello From Mississippi!!!

@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!!!

Re: Hello From Mississippi!!!

Brenda...My heart goes out to you and your family.  This is such a difficult sitatuation something none of us ever prepared for.
Brenda in regards to pain control please insists on pain management.  In today's age there are plenty of medications for elimination of pain.  Don't be afraid to speak up. 
My heart is with you.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Hello From Mississippi!!!

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.

Re: Hello From Mississippi!!!

I am so sorry to hear all this. Don really needs to get to a Doctor, PAIN, can't walk, can't eat. Should not be jaundiced. I would take him to ER, then they have to see him and help him. No one should be suffering like he is. Please take him to ER and let us know what happens.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Hello From Mississippi!!!

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

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Hello From Mississippi!!!

Sorry I havent updated... been busy trying to get some relief for Don. He was stopped the radiation to his spine...he didnt feel it was helping with the pain. Inoticed last Thursday that he was swelling from the calves down to his feet. Contacted his oncologist & was prescribed Furosemide to take. And decided to have Hospice come in. A nurse visited on friday & was getting ready to order the bed & other equipment that he would need. Then his insurance decided that if we used this hospice that we had to pay $4,500 upfront and the ins would pay 75% after that since they were out of network. This nurse took it upon herself to contact the 3 hospices listed that were in network & none of them would come into MS....they were in TN And Arkansas.
The Insurance then told her of 1 about an hr away south of us. That nurse came out yesterday and another one will be here shortly. The insurance will pay 100% after his deductible of $1,000 is paid up front...thanks to his younger sister & her husband it will be paid this afternoon. Hospice is going to schedule an aide to come starting tomorrow for 2 days a week...& if needed they can add more days.

Re: Hello From Mississippi!!!

In my heart, I know that he doesnt have much longer. He's barely sleeping, talking to himself all the time & to his dead mother. Today he told me that he has a man-cave inside too. He keeps telling me that the guys are here to finish the work. I know he is talking out of his head.
What I dont understand is how a "FRIEND" of 35 yrs can tell other ppl that we know that "Brenda's in DENIAL". I just cant understand why she would do this. But that okay....I going to let it slide for now. I have more important things going on in my life. I have a husband that had loved me for almost 33 yrs and has provided for his family. He has never beaten me or our children like her ex-husband had done b4 she listened to me telling her that "she doesnt have to be with him...that there's ppl out there that will help her". She finally left & divorced him after 20 yrs of abuse.
Well this is all for now. Will try to update when I can. Been trying to cat nat when I can...hadnt slept but a few hours since friday.