May 9, 2012 at 3:15 pm #60200
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.May 9, 2012 at 2:01 pm #60199
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.April 30, 2012 at 8:47 am #60198
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.
MarionApril 30, 2012 at 5:14 am #60197
@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!!!April 27, 2012 at 9:18 pm #60196
Brenda…know that you have a tons of support and love coming your way.
MarionApril 27, 2012 at 7:46 pm #60195pamelaParticipant
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, -PamApril 26, 2012 at 11:33 pm #60194
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.April 26, 2012 at 11:00 pm #60193
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.April 26, 2012 at 10:41 pm #60192
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.April 26, 2012 at 10:29 pm #60191
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.
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.April 26, 2012 at 9:26 pm #60190
Brenda…metastases to spine is not a rare occurrence with this cancer. Our JeffG had posted extensively on this subject and the pain control:
I am sending good wishes your way,
MarionApril 26, 2012 at 8:31 pm #60189
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.April 26, 2012 at 8:06 pm #60188
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.April 26, 2012 at 5:56 pm #60187
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.April 26, 2012 at 1:24 pm #60186
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!
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