My Dad
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Hello Betty & Karen, sorry I piped in late but just got back from a small road trip. I am so sorry about your Father and while I don’t have CC I do have Type ll
Diabetes and oddly for 4 months now have been having the same problem your Father has. I had been just fine for 3 years and starting in March my Sugars went wacko. We have tried so many things and now have decided to go see an Endocrinologist, but can’t get in until the end of September. I had been on a form of Metformin and now I can’t take it anymore as I would get the diahrea from like 8AM to 3PM daily! And this was on the trip. With that said we are trying different combos until I can get to the Endo.! I know that if the sugar drops too low orange juice is good or even a teaspoon of sugar. Man! Now you all know about me and my “movements”.
As for Hospice and the Doctors…you can go off hospice anytime and go back on. Listen to what you feel and do what you think best. Since he is in no pain, perhaps you would feel more secure by seeing his GP or ONC. Either doctor can order Hospice right back. If his GP can get his sugars straightened out that would be great. Then the ONC to see if he can suggest anything else for the CC. One thing is enough at a time but with multiple problems…you are great daughters and dad is very lucky to have you. Sending hugs to you and hoping for some better results.Hi, Lainy,
How’s your vacation in Vegas? Bringing a lot of gold back to the dusty Phoenix AZ?Hope you had a good time.
I am really happy that you are back.
Please ,if you can look at Bunksy,the new member’s question about Hospice care.
and try to give him/her a few tip on hospice care.I do not know that much about hospice but you do.You are the most dominant force for patient advocate on hospice and I think this new member can learn a lot from you.
God bless.Betty….you have many questions which need to be addressed with a physician. Hospice always has a physician in charge. You may also contact your Dad’s primary care physician as often times might need to contact your Dad’s GP in order to reach the hospice physician. Either way, you need some professional answers. There are times when certain circumstances require us to be more persistent than normal and I believe that this is one of those times.
And, remember that you can always take your Dad to the hospital either, by requesting his physician to have him admitted or, you may take him to the emergency if you feel that your Dad needs to be tended to in a more critical setting.
And, definitely you should not have to make a decision as to whether you would allow him to bleed to death.
Please, stay in touch. Some clarifications are in order and I hope that you will get just that.
All my best wishes,
MarionHi Betty,
So sorry to hear what you and your dad are going through right now. My dad was in hospice care as well, but he was in the hospice rather than having hospice care at home. In my dads last week in the hospice, he had many of his medications stopped like Percy talks of and was only given meds that would help keep him comfortable, like pain meds, nausea etc.
If I was in your shoes right now then I think I would look to get your dad seen by either his doctor or someone at the hopsital that was involved in your dads treatment as soon as possible. It doesn’t sound right to me that hospice are coming and are only changing the dressings on his feet and not dealing with his other issues right now. Could you not speak with his doctor or GP and tell them what is going on now with his sickness and the other issues? I am from the UK and I understand that hospice care is different here than in the USA, but could you not speak with the hospice team as well and tell them what is going on? Hopefully someone else will be along soon that has experience of hospice in the USA. Would it be possible to change the hospice providers that are coming to see your dad right now?
That is good that your dad is not in any pain right now and should he start to experience pain then there are many meds that will help with this. Also, is your dad not taking anything for his nausea as again there are many meds that can help with that. My dad was also bloated around his abdomen and legs and he had a build up fluid, and that is quite common. Again there are meds and things that can be done for that. Maybe you could also see about getting your dad a commode as that might help here. As to the problem with his bowels being down to the stent, I’m not sure about that. The stent would have been put in to help the bile flow and relieve the symptoms associated with his jaundice, yellowing skin etc.
I know what you mean about going crazy thinking everything is down to the cancer, I went through that as well. This is such a tough situation here but you are doing everything that you can for your dad right now in seeking help for him. I was my dads carer too and I know what you are going through right now. Yes this is a very stressful time, especially so for your mum but I know that the help you and your sister are providing will mean so much to your mum and dad. Please keep coming back here, we are all here for you.
My best wishes to you all,
Gavin
Hi,Betty,
With regard to hospice care,Lainy will be the best person for you to talk to with regard to hospice care and she will be back in a day or two.
Hospice care are different among States;for example in Illinois when a patient transferred to hospice;most of the medications they took in the hospital will be stopped if the GP agreed upon and ONLY “comfort care” such as pain medications like morphine or dilaudid PCA ; Fentanyl patch and morphine oral solution will be provided.
When in doubt about the care a patient received,You are always have the right to ask the nurse;if he/she does not know what to do ,he/she should call the physician for further instruction to solve the problems(ie: BS in the 300-400 and diarrhea etc.)
I am sure Lainy will give you a much accurate picture and will guide you how to deal with the substandard hospice care your father might received.
In addition,I did a research and found out some “risk factors” for cholangiocarcinoma which include the following:
Age>65;obesity;diabetes;smoking;alcohol etc.but remember there are not absolute and each case is different.
God bless.Thank all of you for your responses!! We are going crazy thinking every little thing that happens to him is because of this cancer. When he was told he had the cancer he was in a major hospital in Boise. He is such a difficult case because he can’t have any of the normal tests due to his conjestive heart failure and the pace maker. Because of the pace maker and his weakened condition he can’t have the MRI and the CT Scans with contrast. Back in March he was bleeding enternally and was very very yellow. He was taking blood thiners due to the heart problem and because of the diabetes he has a huge sore on his foot and was put on antibotics (bactrim) the antibotic and the blood thinner he was on did not mix and caused him to bleed. His INR was 9 and that is when they found the cancer in the bile duct. They went in though his throat and looked around and found the tumor, all the tests came back that is was indeed cancer.
The doctors put a metal stent in and he got better as far as being yellow however he has a problem with his bowls and can’t seem to hold them to even get to the bathroom at times. Is this due to the stent maybe?? he is sick to his stomach alot lately and very bloated. Again is this due to the stent?? Like I said before he has been a diabetic for about 12 years now and has been able to control it somewhat with pills and insulin but not anymore it just bottoms out and then goes up to 300 or 400.
He has hospice nurses come out 3 days a week but actully they don’t seem to do anything but dress the wound on his foot.
Our mother is the main caregiver and we worry about her too she is 75 and seems to be in pretty good health but the stress of all of this is taking a toll on her and all of us. Dad is sweetest thing that has ever lived and we just don’t know what to do for him. He seems to be in no pain right now. Is this a painful cancer toward the end?
I am not sure about this hospice at the time!! My sister and I have been talking and I think Dad needs to be under a doctors care instead of these nurses. We don’t know what stage he is in because of the lack of tests. The onclonlogist in the hospital is the one that sent him home with hospice because he said there was nothing actually they could do because of his age (81) and all the other things that are wrong with him.
I know hospice is a great organization but sometimes I think we need another opinion????
Hospice seems to think that if the cancer bleeds again to just let him bleed. I find that very scarey if they can go in and fix it like before and give him a little more time.Thanks for listening, Betty
Hello Betty and Karen….welcome to our site. I am sorry to hear of your Dad’s problems. Fortunately he has both of you two caring daughters by his side. Diabetes and CC is not too uncommon on our site. Until others have a chance to respond the google function (top, right, of bar) will lead you to pevious threads. Simply enter “diabetes.”
For some people the consistent vomiting is a major concern with progression of this disease. You want to address this with the physician in charge. My husband had been able to find some relief by the means of enzymes, small and easily digestistaeable meals, and moving around frequently. Does your Dad have regular bowel movements? If not then stool softeners may help him along.
All my best wishes,
MarionHi Betty and Karen,
Welcome to the site. Sorry that you had to find us all but I am glad that you both have joined in with us here. I am sorry also to hear about your dad, but you have come to the right place here as you will both get so much support from all of us and there is a wealth of information and knowledge here as well. None of us are doctors, but we will all do what we can to help you both so please feel free to ask any and all questions that you have.
I know how you both feel right now, my dad was diagnosed back in 2008 with inoperable CC and he could not have any surgery due to the location of his tumour, too close to the portal vein. He had PDT as his treatment with a metal stent inserted as well. Where abouts was your dad diagnosed, and has he had a CT scan or indeed any other scans? I can’t help you specifically regarding insulin as my dad was not a diabetic, but you could try using the “search forum” function at the top of the page to search for other posts on the site that may be of use to you.
When your dad was diagnosed, was he diagnosed by a doctor that has had experience in dealing with patients with CC, preferably at a major hospital? You say that your dad is on hospice care, is he still at home with hospice coming to his house to see him? If so then I would suggest speaking with them to see if something can be done about his vomiting. If not then I would suggest getting your dad seen as soon as possible about the vomiting. Is he on anything just now for the nausea? There are a wide range of medications out there for nausea and my dad had many issues with that. He tried a variety of types and combinations of these meds to deal with this.
Please keep coming back here and let us know how your dad is doing. We know what you are going through right now and we care.
My best wishes to you both and to your dad,
Gavin
Hi,sorry I don’t know the answer with regard to CC and sugar;may be others can answer this question for you.
Always ask for 2nd opinions when possible and do not believe in statistics;most of them were 10-20 years old complied with old data between 1990-2005.the new and availability of treatment options developed and being investigated and used provide a much improved outcome for the treatment of cc and thus the statistics in the past 5 years although much needed in new treatment plans are still badly needed.
If the BS is 26,I think you should give orange juice or sugar to bring the level up to a saver range like 80-100 first and call your doctor to adjust the insulin or oral dosage of the diabetic medications for you.An endocrinologist consultation is also highly recommended if possible.
If your father has a pacemaker,you can ask the doctor for a CAT SCAN with contrast to determine the current disease state of the cholangiocarcinoma.MRI is another device that can also see the inside of the organs.
Depends on whether it is intrahepatic CC or extrahepatic,there are other means to control the tumor by using radiation therapy.
God Bless.Hi my name is Betty and I am new to the site and just wanted to say that my Dad was told he has Chlangiocarcinoma of the bile duct in March of this year. He cannot have the surgery or chemo because he has so many other issues such as a pace maker and is in very bad health. His mind is young but his poor body is just worn out. As I said he has had a pace maker for the last 5 years because of a cardic arrest in 2006 and is a very bad diabetic. We don’t know how far the cancer has spread because he can not have an MRI because of the pacemaker.
For the last week his sugar has been out of control up and down with taking the same amount of insulin as he always has – bottoming out at 26 on Sunday night and then a couple of more times this week.
Has anyone out there had this problem with this type of Cancer with there sugars? We just don’t know what to expect? The doctors gave him 6 months to a year and he is on hospice with really no doctor anymore. Please if anyone has any advise for us please let us know. We are afraid that the cancer has spread to the pancreas and is causing the sugar to be out of control. He is very sick to his stomach and thowing up just about every day.Sincerely,
Betty
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