My Dad
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kmemoro…Is your Dad experiencing pain although he is taking pain medication? If so then you would want to contact the physician before Tuesday. You might also want to mention the bouts of diarrhea your Dad is experiencing. Although my husband drank an adequate amount of fluids he became dehydrated quickly. Working in a doctor
marions
Dad could not have a resection and he has already had the max amount of radiation and he had 5 weeks of 5FU – 5 days a week and the numbers are still going up.
He cannot eat and when he does it runs out of him. He is tired and now he is saying he has pain(he never complained about pain before).
I cant sleep worrying over what the Oncololgist is going to tell us Tuesdaykmemoro…..The tumor markers are high, but we have seen it go higher yet. In fact I had read once about a woman with tumor markers somewhere around 40 thousand which dropped to the normal 30 to 40 post resection. Of course this is unusual. As you may know the tumor markers alone don’t give a clear picture of disease progression. The physician will take in account the scan results, the rising tumor markers and the apparent declining health of your Dad. Definitely you will know much more by next week. Hang in there. This disease is tricky and unpredictable coupled with some pleasant surprises.
Fingers are crossed for next weeek and know that we are here for you.
All my best wishes,
MarionI want to thank all of you for your kind words and support.
I am truly not looking forward to the CT results on Tuesday as I found out that Dad’s labs were not good. In August his CA19-9 level was 1321 and Monday’s number was 1649.7. His CEA is also up to 16.3, his RBC and HGB are low-he never had a low blood count before.
I know we are going to be told that the tumor has gotten bigger and I also am wondering about the liver and pancreas. When they tried to do the resection we were told they were going to remove at least 1/3rd of his liver then and that there were several unknown images in the pancreas but because they could not do the resection we never found out what they were.
I have been reading other posts and have not heard of anyone with the numbers that high, even my PCP had never heard of that high a number.
Can anyone give me some insight into knowing what these mean?
He had 5 weeks of 5FU chemo and 5 weeks of radiation(every day) so the Dr. said no more radiation but maybe more chemo but if the numbers are up that high after all that will it be worth it.
He says he has no pain but he takes 2 oxy’s a day for arthritis so that may be masking any pain he may be experiencing. He says he feels ok but he doesnt look like he is. His color is off and he isnt eating much at all. I have worked for Dr.’s myself for more than 20 years so I know when patient’s are not themselves.Hi Kmemoro,
Welcome to the site. Sorry that you had to find us all and I am sorry also to hear about your dad. But I am glad that you have joined us all as you will get a ton of support and help from us all. Please feel free to ask any questions as well and we will do what we can to help in answering them.
As to your question about how long you have with your dad, none of us can answer that question unfortunately. As to talking to your dads doctor behind your dads back, I wouldn’t have thought that the doctor would be able to talk to you alone without your dad unless your dad gave him/her permission to do so. Someone correct me if I am wrong here, but in the UK that would not be possible unless the patient gave permission to the doctor to do so, maybe it is different in the USA.
Being the carer is a tough role to do. I was my dads carer during his battle with CC and I’m still my mums carer so I can relate so much to how you are feeling right now. It could well be the case that he is indeed not facing up to his illness and he could also be wanting to protect you all. Maybe he thinks that because he has had the surgery that that is it and he is cured now? Just be there for your dad and support him as much you can. And from what you have said it sounds like you are doing just that. Keep coming back here and find out as much information that you can, the more informed you are the better.
You will find out more info on Tuesday when your dad gets his CT results back and I will keep my fingers crossed for the best possible news. Please let us know how your dad gets on and remember that we are all here for you.
Best wishes to you and your dad,
Gavin
kmemoro…..I believe that hope is the most important, emotional tool we possess. In fact it has been said that the feeling of hope is the last thing to go when facing a fatal disease. For now your Dad may not want to accept the gravity of the situation. And, that may have several reasons: he may want to continue to fight, he may not want cause hurt upon his family by leaving you, he may feel guilty for being ill or, he may not intellectual understand the severity of his illness.
Asking to speak with the doctor in private may be a good start. This will give you the opportunity to ask frank questions and to receive honest answers. You then will then be able to discuss it amongst each other. Physicians have to inform patients of their findings and in most instances they are able to handle it delicately. The upcoming scan results will bring you one step closer to understanding the physical state your Dad is in and how youKmemoro, great. If it comes from the doctor, what ever IT is, you will all hear at the same time and you will not have to worry about explaining later. That unfortunately is what the doctor is there for. IF you don’t feel just right about what he has to say remember, you have the right to another opinion. I will be looking forward to hearing what happens.
Thank you Lainy. I will be there with Dad and try your approach.
PCL- I dont know what you mean by the senior caregivers? Its nice to hear from someone who is doing well with the illness. Good Luck and stay wellHi,
The oncologist can give your dad neupogen to increase the white count(WBC).
The doctor can drain out the fluids caused by ascites and give your dad Lasix or aldactone to control the symptoms.No pain is good ;waterly eyes? I am not sure it is related to the tumors.
The best way to handle your dad’s situation MEDICALLY now is to wait for the CAT scan result due on next Tuesday.
How long can you have with your dad timewise? really nobody can answer .But I know from what I have learned from this web site,there are 3,5,10 and 15 years survivors out there.BTW,I am a patient of this disease for the past 30 months and I still feel very normal.
I am not good at providing answers for the more tough questions with regard to how to handle the situation between you and your dad.But I am sure the more senior caregivers will come on board shortly and help you out on this.
God bless.Dearest kmemoro, welcome to our wonderful family of the bravest and most caring people from all over the world. I am very sorry about your Dad but please keep in mind that no one was ever born with an expiration date on the bottom of their feet. The best any doctor can do is give a guess. We have members here who were told 2 months and that was 2 years ago. One never knows and that is why we have to show our love and make precious memories while we can. With that said, I do have some questions. You said his color was off. Do you mean gray or yellow tinted? If he has fluid in his stomach that can be drained to make him more comfortable. It is wonderful that he has no pain.
Where is he being treated and have you sought out another opinion? You need to make sure that any doctor or hospital you use has had experience with CC.
Finally, I would wait until the doctor talks to him on Tuesday and it would be good if you were there and then in front of the doctor and your dad you might broach the subject of prognosis and treatment. I feel a patient has a right to know and to understand so that they can ‘put their house in order’ as we used to say. Please keep us posted and let us know how the appointment goes. We care.My Dad was diagnosed with StageIV BDC in July 2011. on the 18th he underwent surgery to resection it but it was inoperable so they inserted a stent. he has undergone chemo and radiation and tolerated it well but today we went to his Oncologly Dr and his WBC was only 1.9 and the Dr feels that he has fluid in his stomach as his bellybutton is protruding. his skin tone is also a little off. the Dr. ordered a CT scan which will be done this Friday and we go back to see him next Tuesday. his eyes were also watering and he has had no pain
Dad told everyone after he finished treatment that he is cured. We dont know if he’s not facing his immortality or he’s protecting us. what do we do? Do we go behind his back and talk to Dr? do we say “Dad we want to have quality time as long as we can and do something you want to do”???
I was wondering if anyone knows of how long we have with him as Dr.’s wont pin down a timetable. what do we have to look for to know that its progressing
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