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devon, thank you for your response. When we see the Dr. tomorrow I am going to ask about home help. When Bob was in the hospital I prepared a list of questions to ask the Dr. He gave me very brief answers but not enough information that I felt comfortable with what he gave me. The Dr. seemed irritated by my insistance to want to know what was happening. Bob is terrified of the hospital. He feels if he goes into the hospital he will not come home. Whenever I have had to call and ambulance I think he feels I have let him down. I promised him I would take care of him. Nursing home would never be an option, but at times I am paralyzed with fear. He breathes so shallow I have to watch to make sure he is still breathing. Sometimes I believe even now he has not accepted how ill he really is. Is that possible or does he know. We have never spoken about dying and so there are many things I would like to talk to him about but to do so would be acknowledging the inevitable. How does one approach it, or should it be up to Bob to do that. Irene, Bob’s wife
Thank you all for your replies. Bob was admitted to the hospital a week last Sunday. He had a blocked small intestine, and multiple tumors in his stomach Had been vomiting again. Along with all the abdominal chronic pain. Once again they put the tube through his nose, threaded to the stomach and spent three days draining. Then they tried him on a liquid diet, broth and jello. After two days Dr’s switched him to solid food. He also received two units of blood due to anemia. Zofran for nausea and fentanyl pain patch and oxycontin, The solid food was left untouched, he was not hungry. So Friday morning came and the Dr. said he could go home.I explained to the Dr. that since they stopped the draining he was back to the symptoms before he was admitted. Chronic abdominal pain, no appetite and extreme weakness. The Dr remarked that at least he wasn’t vomiting. What was overlooked was he had not had a BM in 10 days, and it had been close to 36 hours he did not pee. But they sent him home. I should add that ALL his Dr’s were out of town. The Dr treating him, did not know him as a patient. After he got home he took a turn for the worse. Became dehydrated. I could not control his blood sugar because he had started vomiting again. He was confused, seemed almost delirious. I called his Dr. and was given the advice to get him to drink lots of fluids (I wish). I am trying all day long. He is unsteady on his feel. Lost more weight, total about 45 lbs. Nothing sounds good to eat. I finally got him to try Ensure. His face is grey in color. And today he has developed a a real crackly cough and laryngytus. How does one tell when a person has turned the corner. He cries out a lot in his sleep. If anyone has been through similar circumstances and has any advice I would surely welcome them. Thank you so much. Irene
We have a Dr’s appointment on Thursday with his GI.Dr.Jeff, Thanks. Today is a better day. I think the pain is not so severe if the food eaten is more bland.
Irenethecdr..When you refer to agency staff are you referring to the hospice people using temporary help from one of the temporary help agencies? When my sister in the UK was dying she had hospice come in every day. The young woman brought her knitting and talked, got her meals, bathed her, etc. This went on for about 4-5 months. Her husband, my brother-in-law had a furniture store and he went to the store every day, went home for lunch and of course took care of her after the store closed. The final three weeks he did not go to the store, but stayed with her. I have heard people say that here in the U.S. hospice might visit anywhere from 1-3 days each week, or every other week. Does it depend how close the patient is to the end? Sometimes when reading the obituaries ( I know, morbid) the writer will express appreciation to the hospice people and sometimes gives the name of the hospice.
IreneI agree with Charlene. Each time my husband got jandiced it was because the stents had become blocked. In fact the Dr. told me to watch for any yellowing of his eyes which means jaudice and a good possibility of blocked stent(s).
Irene (Bob’s wife)My husband started out with the external plastic stents, but because of continuing infections they were replacing them every 3-4 weeks. Shortly thereafter Nov. 2006 we went to Mayo in AZ. they replaced them with internal metal stents. Since then they have blocked twice and the radiology intervention have gone back in with a balloon to dilate the area around the stents and allow for drainage. The metal stents cannot be removed. The Dr. said if he gets more blockage it might be necessary to put in an additional stent to allow for more drainage.
IreneJeff and Peter, thank you for your input on this. There are so many questions with CC and as one Dr. said to us, “contrary to what people believe, we Dr’s do not have all the answers”.
Tibor, Many thanks for your information. My husband was diagnosed Sept.2006 and given 3-6 mo. At first they placed external plastic stents for drainage but he had them replaced every 3-4 weeks because of infections, including one 2 week stay with liver abcess which resulted in septic shock, and septic shock three weeks later with another infection and bile duct blockage. Following in November we went to Mayo Clinic in AZ where they replaced the plastic stents with metal stents. He received no chemo or radiation. He gained back all the lost weight He was not a candidate for surgery. He is diabetic, has heart failure, also had a five vessel bypass just two years before this diagnosis and his age , 75. Then couple of months ago he started vomiting up after every meal. ERCP showed a spread to his stomach. Lymph nodes were all clear, however, food was backed up and they drained his stomach for 8 days. No food or liquids, just ice chips.After that time period, they did a bypass from the small intestine to the stomach allowing for food from the stomach to drain. Again no food or liquids for five days waiting for healing. Of course he was on a drip. Then a liquid diet. Naturally all the weight he gained he lost again. Whereas chemo was not encouraged initially, it is now. The Oncologist wants to avoid any further spread to the liver, and other organs. This last surgery has left him very weak. He sleeps a lot. Has a lot of pain on the right side, and more so when he has eaten. Based on what the latest tumor marker and blood tests will show first of the week, will depend if the Dr. starts the chemo (Gemzar sp). Dr. would like to wait and hope he gets stronger. I don’t know if others have the same problem I find myself in at times. Which Dr. to call when something happens. eg. Bob started with diarrhea. Do I call his Gastro Dr. His Primary Dr. the Dr. who did the stomach surgery or Oncologist. I ended calling the Gastro Dr. who sent out medication. And I wish the Dr would read the chart before they come in. It seems like we have to fill them in and wait for them to flip through the pages on his chart to catch up. For instance the radiology intervention called for a cat scan before surgery. The oncologist had not even looked at the results before he came into the room. When we asked why they were still trying to get a biopsy from the bile duct area and not the tumor in the stomach, he said to bear with him a minute while he read the report. Sometimes I wonder with all the Dr’s involved does the right hand know what the left hand is doing. Sorry to ramble on. I am grateful for this board and all the people, such as yourself, who take the time to help and give of your time to answer questions, and read a ramble such as mine. Thank you again.
IreneSaw the Oncologist today. He said that even without the biopsy he would let the insurance people know that the diagnosis is bile duct cancer and give an explanation along with the tumor market CA 19 9, which 2 weeks ago was 656. He is reluctant to start chemo Gemzar (sp) until he gets another tumor marker from the blood test today. Reason being the weakness of my husband Bob If the marker is somewhat unchanged he would prefer to wait to give him time to get stronger. The blockage in Bob’s stomach which the Gastro Dr. said is a tumor which spread from the bile duct was referred to today by the Oncologist as a “thickening” of the lining of the stomach. He also said that bile duct cancer is almost the same as pancreatic cancer. Both respond to the same treatment. If the marker has sufficiently increased to be alarming he would start the chemo right away. So, now we will wait to see what the CA 19 9 shows. He said a normal CA 19 9 is about 30. So, some good news today that he doesn’t think we will have trouble with the insurance.
Marions thank you for your prompt reply. Did you have only one needle biopsy and that was successful. I am wondering why they went back to the bile duct to try again for a biopsy. They had tried that with brushings twice. I wonder why they wouldn’t try the new tumor located in the stomach.
Thank you Joyce and Rita. We talked to the Oncologist. He told us that my husband is much to weak to receive Chemo right now. He needs to build up his strength. Reason for starting chemo now when they didn’t at first diagnosis is since the tumor has spread they need to stop the growth from invading the liver. However, he is struggling to get over the latest surgery. Very weak, no appetite, lots of pain. He ate a small portion of supper last night, but in the night he threw it up. Now I am wondering if the surgery was successful. The surgery was to create an alternative opening for the food to be extracted from the stomach. Before he had the surgery and was vomiting every meal we were told that was because the food had no where to drain. I’ll keep you in my prayers.
My husband Bob is 76 years of age. 14 months ago he was diagnosed with inconclusive bile duct cancer. Inconclusive because they were not able to do a biopsy. However all the signs pointed to BDC. He is not a candidate for surgery because of his age, plus he is diabetic and also has congestive heart failure. His heart operates at 30%. Two years ago he had a five vessel heart bypass. Then Sept. 2006 the bile duct report with a prognosis of 3-6 months. Depending on the Dr. the prognosis could be anything from 3-18 months. We went to the Mayo in AZ where they placed metal stents. Prior to the metal stents he had plastic stents. He had so many infections and was in and out of the hospital, twice suffering from septic shock and liver abcess. In Oct 2007 the metal stents became blocked and the Dr. used a balloon to dilate and enable the stents to become unclogged. One month later, (Nov.) he started vomiting. The Dr. did an ERCP and discovered his stomach was blocked. The bile duct tumor has spread to the stomach. He spent 10 days in the hospital while they drained his stomach of backed up food that had no exit. That took six days during which time he was not allowed any food or liquids. He could have ice chips. They did a bypass from the small intestine to the stomach. So now he has the bile duct draining into the stomach and the stomach draining into the intestine. So far he has received no chemo or radiation on the bile duct tumor.They told us it was pointless since stats show it is not successful. However, now with the stomach invaded we are told chemo and/or radiation can be available. We are scheduled for a consultation this coming Monday, Dec. 3. I am wondering if he has the strength to do this. He lost about 25 lbs in the hospital. He is very tired and said he feels so weak. The surgical abdominal incision has not healed yet and I have to clean and pack it with gauze every day. Would chemo be started under these circumstances? Yesterday was one of his awful days. Neither ate or drank anything and stayed in bed. Today is much better and he has been able to eat some small portions. My husband is a very private person and keeps a lot to himself, so he doesn’t discuss all of this only to let me know he feels terrible. I wish he would talk to me. I can only imagine how awful it must be for him to keep all his emotions inside. So far he has beat the 3 month prognosis but I am worried about the chemo. His Dr. told him the chemo would be the kind that does not cause nausea or hair loss. I guess I thought all chemo and radiation caused all kinds of miserable side effects. We will know more on Monday. Thank you for letting me ramble. God bless each and every one of you. I am so glad I happened to find this site.
Irene.
