Cough with Cholangiocarcinoma
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Hi.
Louise, it gives me a lot of encouragement after reading your note. Thank you so much for writing in. You are right. Faith, information and family would be the biggest help in these times. I hope my father has the same kind of response.Rosy
Rosy, I am a 54 year-old female with CC. My diagnosis 2 years ago was stage 4. I had chemo with Gemzar and Cisplatin, and it surpassed the Dr. expectations. The journey has had several ups and downs, but I am currently in remission and feeling great. #1 help to me was my faith. I believe there were a thousand people praying for me, and my prayer team keeps growing. #2 help was gathering as much knowledge as I could. Internet helped with that, but keeping a notebook where I could jot down my questions as they occurred to me and I could get answers next time I saw a Dr. Also, writing down the answer so I didn’t have to rely on my memory. #3 help was my family. As I kept them informed, sometimes they had questions that went into my notebook. I was fortunate in never having to fire a doctor. Their area of expertise is the disease, but who knows the patient best? Besides, the disease and the treatments are rarely the same, having different affects on different people. So, keep looking up, and don’t let anyone kill your hope!
God bless you!
Louise
Rosy, I am glad at least one issue has been resolved for you. You no longer have to question yourself if you are doing the right thing in regards to telling your father the truth about his cancer.
I am so glad that you got a second doctor’s opinion. I hope your father’s infection clears up soon so that he may begin chemotherapy. Best of luck to him!Hi.
We have been telling dad what he has, even though not telling about stages. We are telling whatever he has been asking, and he himself didnt ask about the stages and prognosis, so we understood that he doesn’t want those to be discussed much. And on mention of the chemo, he now certainly understands the malignancy of the tumor. You were all right in saying, we simply cannot hide this longer.
My dad is 53 and has always been in good health. And I am situated in Bombay, India. I was earlier in another city, but moved to Bombay because here we have a number of cancer centers.
We spoke to an oncologist a few days back, who was not so keen to have chemo. So, now we have been talking to another oncologist. We may start chemo after my father’s jaundice and infection are under control. My father had got severe infection called cholingitis in the biliary tract and liver. Once he is out of it, we will go further.The sharing of information here helps so much. I thank you so much for your prayers.
Hi Rosy, you and your Dad are in our thoughts. It’s a difficult road and there are no easy answers to so many of the questions that surface along the way. You’ll make the right choices. My Dad had cc, he told us up front that he didn’t want to talk about stages, didn’t want to hear about a prognosis, the topic of potential death was off the table, and tears were not allowed to be shed in front of Dad. Behind the scenes however, Dad was tending to unfinished business. But that was just how our family handled it, and because we were peripheral to Dad’s fight, we respected that. It was his hope, belief and endurance that carried us all through his journey. While he lost his fight in March, his refusal to outwardly consider anything outside of winning the battle, absolutely gave him quality of life. It was his way of dealing. You may want to ask your Dad how much he wants to know, and simply honor such wishes from there. You likely won’t be able to hide the malignancy of the tumor much longer, and the docs will probably start painting a clearer picture in your meetings. And there’s no telling how this will unfold, every case is different, miracles happen everyday. It can be hard to get the whole family on the same page, regarding such levels of honesty, from my own recent experiences. Your Dad’s processing strategy may be different that what others in the fam would have chosen, and that’s ok too.
As an aside, at the time of Dad’s diagnosis he too was told that the tumor would not respond to chemo, and that radiation & resection were not options. We immediately went after lots of other opinions. Keep in mind that sometimes you can send your Dad’s records/CD of scans to other hospitals for second opinions- such that he doesn’t have to travel. There can be extreme variation in how comfortable various doctors are, in their willingness to treat cc, and second opinions may reveal this for you too. Your Dad may have very strong opinions too, about his options, with a better understanding of the big picture.
Wishing you strength Rosy.
Tess
Hi Rosy and so sorry that you had to find us but glad you did. I am a firm believer in EVERYONE knowing EVERYTHING. That way it is never a surprise and you will not hear “why didn’t you tell me, there are things I would have prepared and done”. But that is only my opinion everyone is different. Also we are heavy believers on this site in second and third opinions and if you don’t like what this doctor is telling you gather your information and go for a second opinion. When you are starting this terrible fight there is so much to read and retain. You did not say how old your father is and I think that would help make the decision how much you are willing to put him through. Yes, some of the colangio cancers will not respond to chemo others will. Teddy was 73 when we started this journey and his type will not respond to chemo but it did respond to radiation and cyber knife. We have also opted to not do the chemo anyway. He is now going to be 77 and he said he would rather have quality of life even if it turns out to be short. It is a personal decision but it cannot be made if everything is not out in the open. Good luck and please keep us posted.
Rosy, only you and your family can know what is best. My personal opinion would be to tell him he has cancer and that it is still in a stage in which it can be fought. How will you explain it as it progresses? Are you prepared to tell him you lied to him? And I’m sure if he started chemo he would realize the tumor was not benign.
Where are you located? Are you in an area that has a cancer center of some sort? Are you dealing with an oncologist yet or just your family doctor?Thank you for your prayers and the valuable information.
I will take a print of the news and take it to our doctor.
Deb, My father is still Stage Three. And we aren’t able to muster the strength to tell father everything. We are afraid he might become upset and stop fighting. Right now he thinks he just has a benign tumor which made him jaundiced. Please advise me, what should I do?
Recently, his right stent got blocked and he had to be taken back to the hospital because his bilirubin was going up (it was 17 by the time we took him). After external drainage, its now come down to 10.
Rosy- Marions is right! Print that and take it to your doctor!
And while the advanced form of this cancer is not curable yet, there are options available for patients to increase their survival time. Some people do quite well with chemo. My dad was doing great and it shrank his tumors, but then he developed some infections that kicked his butt and he won’t be able to take chemo again and he is nearing the end of his road. But, if he had never had the bad luck to get that first urinary tract infection that started him down the long road to other infections, I think the chemo would have added a lot of time to his life because his tumors shrank quite a bit in just 2 months of treatment. Plus there are other options besides chemo…
What stage is your father? I am guessing Stage Four because many doctors seem to write off Stage Four patients as goners before they really should.
Have you talked with your father yet and told him everything?
My dad knew he had cancer but not how bad, and I wish now that I had been open and up front with him from the very beginning. As shocking as it would have been for him, I think it is more shocking to him that he is as bad as he is in just the three months since he was diagnosed. He went from a fit hardy man with some vague stomach complaints to a frail wheelchair bound man who is on constant oxygen and who is fifty pounds lighter. But hindsight is 20/20 and everyone’s situation is different. You have to do what feels right and go with it. Good luck and best wishes for your dad.I have cc and have great results with chemo shrinking the tumors in only 6 months. I believe in trying and then if you don’t like it, you don’t have to continue it.
Rosy….don’t forget to click on the “Breaking News” on top of the page. You might want to print out the abstract and have it ready to hand to the oncologist at your next visit. It is always good to make a decision with all the information in place.
Tons of good wishes coming your way,
MarionHi Rosy,
Although the official consensus is that chemo does not work, I have found that for me it did work to improve survival time. Chemo does not cure the cancer, but it does give you months to years of time that you may not have had otherwise.One thing we do know about this disease, though, is that it treats people differently. Some people may have a good response to the chemo and for some it may not help at all. But you never know until you try!
Of course, you do have to take the patient’s age and overall health into consideration when deciding on chemo. In my case, my health has always been good and I’m only 46, so I decided to try chemo, and have been on it since Sept. 07. The cancer has metastasized, but who knows if it would have killed me long before now without it.
Hello. Thank you so much for your kind words. Its just been a month that my father’s cancer was diagnosed. It has come as a shock to us, and we havent yet revealed it to father because we think it might upset him.
Deb: we havent started on his Chemotherapy yet, and really thinking if we should because we met the oncologist who said these type of cancer have a very poor response to Chemo, and leaves the patient very weak too. The oncologist is not very keen on starting Chemo. Is it true that Chemo doesnt work in CC?
Also, oncologist says that the cough is because of some antibiotics that my father had to take after his operation to place mettalic stents in his right and left bile ducts that makes his respiratory tract very dry. Cough syrup hasnt been working too well, and his cough is still there.
Hi Rosy. Is he taking chemotherapy yet? My dad recently developed some lung problems, maybe due to his chemotherapy. But try not to worry. At first, right after being diagnosed, everything will seem like it is about the cancer, even if it is not. Remember, you can always ask your oncologist too. Don’t be scared to go to the doctor with questions. I have found this out myself… the doctors I have dealt with seem to treat information like a valuable commodity and parcel it out in bits and pieces, never really saying too much at once. If you have questions about anything, don’t ever be afraid to ask your doctors. That is their job. Good luck with your dad!
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