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La fundación de colangiocarcinoma (CCF) ahora ofrece servicios de traducción en Español. Por favor publique sus preguntas en Español y un intérprete le va responder.
Posts found: 17
It's taken me a few weeks before I could post this. John Boulley passed away on September 4th. We were in the middle of hurrican Ike. Even though we live in Arkansas it still hit us hard. We had no electricity. The hospice nurses made sure he was as comfortable as possible.
Sometimes it feels like he's still here, just gone out for awhile. Then it hits that he's not comming home.
Before he slipped into a coma he made me promise I would be alright without him. So I must go on and keep that promise.
We knew from the beginning this would be the outcome. The doctors and their staff gave us two and a half good years. John was able to take care of himself until the week before he died. He was a very strong proud man, and stayed that way till the end.
He will be missed terribly.
Thanks to all on this site for your kindness, support, and sympathy.
I want to express my gratitude to all of you wonderful caring people for being here. In all my fear and frustration through this terrible ordeal this site has been my refuge when I couldn't get answers anywhere else.
John and I talked to a hospice nurse yesterday. So far it has been a relief to know we not just hanging out there. John still hasn't come to grips with the reality of it all. He still thinks he may get well enough to restart chemo. He is having confusion issues. His last bili was 28.7, two weeks ago it was 17.6.
John is on whats called medicaid spend down. He has been on disability since January o7 and will not qualify for medicaire till January 09. Unfortunatly I don't think we have that long. The hospice nurse told us that they have caseworkers that will take over his medicaid and we will never be billed for any service from them. This has given John and I much peace of mind in the financial area. John doesn't want to leave me with huge medical bills.
I must get to work but again Iwanted to thank all of you who have helped ease my mind and answer my questions on this long hard journey we're all in together.
Thanks for the reply. John is very weak, his bili is 28.7 and he has lost 25 lbs. in two weeks, he is also experiencing shortness of breath and alot of clear flem. He sleeps most of the time. The doctor was telling us about hospice and John was falling asleep listening to him! His voice is very weak and thin sounding. His skin is tight to his bones and dry. I don't think another opinion would be any different at this time. Besides that would mean MD Anderson and we can't afford it. My boss's mother just started hospice and she said it isn't costing her anything but she has medicaire and a suppliment insurance so that would cover her. John's afraid that hospice will come in and take over his disability income. That is what I am trying to find out to ease his mind.
We just got home from the doctors office. It was not a good visit. He told John that he can not continue with any treatment at this point it will do more harm than good. He has strongly suggested hospice. John is having trouble getting around the idea that this is almost the end of the road. I think at this point hospice couldn't hurt. I feel like I'm on a trapise wire without a life net under me. John is on medicaid spend down and he's afraid hospice will take all of his disability check. At this point to me it doesn't matter but it concerns him. I know all states are different, but does anyone know how hospice gets paid? He hasn't worked in two years so his health insurance is long gone and with the exception of a monthly disability check he has no other income or assets. I have a call into his medicaid case worker but who knows when I'll get a call back. Any advice or shared experiences would help me help him decide the best corse of action.
Thanks to all,
My husband(his name is John ) also receiced the hospice talk last week. He just turned 53 Saturday and asked for another choice. The doctor has given him a new treatment with 3 different chemos its a long shot and the doctor doesn't give us much hope. At his blood work last week his bili was 17.6 so don't let then tell you that no treatment is out there. Unfortunatly, it just isn't all that effective in most cases. Your dad must weight the option and make a choice thars right for him. Any chemo takes it toll on the body and in some cases its a quality verses quanity choice. Is your father able to make his prefrences known? If so , in my opinion I would follow his wishes.
If its any consolation we're in the same sinking boat.
Love , prayers, and best wishes.
Hi again to all,
I'm posting under chemotherapy this time becauce John has decided to give it his all and go out fighting. The doctor gave us the hospice talk then told John there was one more treatment he might want to try but the success rate was only about 5%.
John said 5% was better than no percent. It's quite a cocktail. First he gets panitmumab for 1-2 hour then 5FU for 1 hour then a 46 hour bottle of Avastin. After the 46 hours they then gave him 2 units of blood. He hasn't been sick as such just very weak. he won't eat and sleeps about 16 out of 24 hours. Anyone else had this combo of chemo ?
July 5th was his birthday, he turned 53. We had family from out of town and all got together for a party. It was great but he was exhausted and slept all day and night Sunday.
Love to all,
I usually just read the posts but I feel compelled as a mother to write to you. I know its hard to see your mother go back home. But as a mother of two daughters I can assure you both your parents will want you to stay in school and complete your education. Eventhough they love you and would love to have you by their side its because they love you so much that, its just my opinion but i feel sure they will insist you stay in school. Your mother has so many concerns at this point if she thought you gave up your education and future to be with her it would just add to her sorrow and pain. Someday when you have children of your own you will understand. A mother will gladly give up anything for the good of her children. Visit as often as you can but I'm sure your morher wouldn't want you to quit school. Please, ask her, she'll tell you what her wishes are.
Love and prayers to you and your mother and family.
I think you are the most caring person I've run across in way too many years. I've read many posts and you are always there with kind words and sound advice. And all this while chasing your own cc deamon. John is determined to do anything and everything possible to live as long as he can. The idea of dying doesn't bother him as much as leaving our two granddaughters and missing out on their growing up. Even though I understand his decission may not be the best I can't bring myself to discourage his hope in any way. Could you please give me some idea of what to look for in the way of side effects so I can try to be on top of any problems as they arise?
We've been together 33 years come the 10th of July. I don't know how to live without him.
I haven't posted in quite sometime. However, I have been reading many of the other posts. John and I just got off the phone with the doctor and it wasn't good news. John had a ct scan last Wednesday. He has intrahepatic cc with metastases to both lungs, a large mass on his pancreas, abdominal lymph nodes, peritineal wall, and L2 vertebrae. The doctor said the scan results show at least a 20% increase in all cancer sites and more in the liver and pancreas. The doctor said he is out of options for treatment. John has been jaundice for 3 months now. They put in a bile drain but nothing much is comming out. His liver is just not functioning. In the past he has had radiation, gemzar & oxoliplatin cocktail (he started to have reactions to oxoliplatin), erbitux(bad reaction),panitmummab was the last round of treatments. Before any of these treatments he tried a clinical trial with soranifib with disastrous results(he almost dies 3 times in two weeks in intensive care). I've been looking at other trials but his bili last week was 17.6 and rising so no trials either. The doctor relunctantly sugested a combo of gemzar & cistiplatin as a means of keeping the tumors from growing any more but he didn't sound too hopeful. Has anyone had this combo and if so what were the results? Is it just me or does a phone call instead of a face to face appointment seem like the chickens way out of dropping the bad news?
I'm sorry about rattling on but right now we both feel like we've been hit by a brick wall. Its very depressing. It helps to put things into words.
Hi, just wanted to add our experiences with the medicaid spend down that they put you on for the first two years. You might think it pays for everything but it doesn't. The patient has to qualify every three months. And the approval process usually takes another three months. So you automatically run three months late on all you doctor and hospital bills. In order to quallify your bills for a one month period must be three times what your household income is for that month. With our medical bills and our lack of income thankfully John has qualified for every quarter. Another potential problem is medicaid has limits on how often they will pay for a procedure and a limit on howoften they will pay for ceritan blood work. unfortunatly, John has to have blood work done once a week. Medicaid won't pay for the last two months of last year. Also you must be vigilant about how the hospital processes the claims. If it is not processed properly medicaid will denie it. And if the billing department doesn't resubmit within the alloted time it becomes your responsibilaty. There are many more loopholes we've run into but this is getting long winded. Best of luck to all.
John had a ct scan on 2/26. Got the results last week it said all was stable. He is now on a month long break from chemo. We don't go back to the doctor til April 2. However, we had not noticed on the previous scans a 5.6 cm mass on the head of the pancreas. Has anyone else had mets to the pancreas? What type of problems arise from tumors on the pancreas? Also, John is diabetic. His diabetes is controled by pills. He's lost about 20 pounds in the last two months and is now having trouble with low sugar attacks. He has cut back on his diabetes meds.
a few days before his ct scan John had 3 liters of fluid drained from his abdomen. Tests were run and the doctor said the fluid had suspicious cells. What does that mean? How good can the good news be if its off set by such bad news. I am so thankful for a place to ask questions and try to make sense of all this mess.
I printed out the pages on triphendiol and we took it Johns doctor on Wednesday. He said he had never heard of it and kind of dismissed me. I sure would be interested in what some of your doctors have to say about it. And when they think it might be approved for use on cc.
Thanks for the replys. They managed to stop all bleeding before we left the hospital. John has had three previous scopes to band off any varices. The doctors say this is something we must be vigalant about as it is possible to bleed out. They didn't do a MRI or CT scan. He had a CT last month it didn't show much change. However, John's overall condition is deteriorating he has no energy,gets hungry but doesn't eat much, moves like a 90 year old man(he's 52), is passing very little urine, and his stomach is all swollen and hard. Also, he has severe stomach and intestinal cramping type pain especially at night. I'm wondering if it was such a good idea to send him home. We see the doctor Wednesday, it seems like a long time away.
John and I are home after 8 days in the hospital. He had nasuea, vomiting, and diarrhea with no fever. There was also some blood in the vomit and diarrhea. We had two sets of doctors, the onocology doctors and the gastrointestinal doctors. Unfortunatly, the two groups could not agree on almost anything. One group says its a stomach virus, the other group says its a side effect of the oxaliplatin. In the end they never did agree. However, they did do a EGD scope to check for bleeding vericies, and then a cholenoscopy to check for any bleeding. He also received all total 4 units of blood because he ia anemic. All through this John had terrible stomach and intestinal pain. They gave him oxycodine and morphine before the pain would let him get some much needed sleep. Friday before we were discharged they took his weight. Between Thursday morning and Friday morning John's weight went from 217lbs to 231lbs. Its all in his stomach, he is so bloated he can't ever bend over and take his shoes and socks off. He said it didn't feel like gas but something with more substance.
Does anybody have any idea what it could be? We aren't scheduled for a doctors visit until Wednesday. Do you think he'll be ok till then or should we call the doctors weekend service? I'm worried he didn't sleep well last night because of pain. He is finally sleeping now because of the pain meds.
I'm glad someone else is asking about back pain. John has been having severe pain in his middle to lower back. Also pain and pressure in the liver area. He's been taking 2 oxycodone every 4 hours. Unfortunatly the pain meds caused constipation which caused even worse pain. After a miserable couple of days we got back on track. The Dr. prescribed extended release oxycodone, seems to be doing the trick. But, John will sleep for 16 or more hours at a time and is weak and stumbles when he walks. Should I let him sleep or should I try to get him up and on the go. I want to do what's best for him but I'm not sure. The Dr. just shakes his head when we tell him about the pain. I wish they would give us some idea whats causing the different pains. I just don't think they are telling us everything. Its frustrating.
I hope by compairing notes maybe we can help each other
Thanks for the response. This is Johns second bout with jaundice. Last July he was in the hospital for a week with bilirubin counts as high as12. Normal is 1 to1.5. At the time there was some talk of stents but the doctors decided to try more chemo to shrink the tumor blocking the bile duct and it worked at the time. We are hoping it will work again. Johns cancer has also had mets to his left lung, lymph nodes, and peritineal wall. Jeff, do you have ant shotrness of breath or congestion in your lungs? Also, John is having terrible pain in his back. He's been taking oxycodine, two every four hours. I know what you mean about a rollercoaster. One doctors visit is great and the next is bad news. One day John feels great and the next couple of days he's flat out feeling miserable. How long have you all been fighting this cancer? It's very difficult to get the doctors to be up front with you. Sometimes I don't think they know exactly what to expect.
Thanks again for your answers. I'm so full of questions I don't really know where to start but this is a begining. My thoughts and prayers are with you also. Happy New Year to all!
I've been watching and reading this site for about a year now. I guess it's about time I introduce myself and John.
My name is Alice and John is my ex-husband. We've been back together for twenty-one years.
John was diagnoised with cc in march 06 after having his gallbladder out. Previous to the surgery John had severe pain in has side and back. He went to the emergency room thinking it was a appendicitis. They couldn't find anything but a hemangiomia and it was nothing to worry about. That was about a year before the correct diagnosis. When the surgeon was removing the gallbladder he decided to check the liver and did a biopsey.
We ended up at The University of Arkansas Cancer Research Center. John started a clinical trial for Sorafenib. It proved disasterious. John was in intensive care for two weeks on a ventilator. The doctors said they almost lost him three times. So much for trial drugs. After he was strong enough he started a combination of gemzar and oxaliplatin. after two runs of this he was switched to xeloda. After four two week treatments the last one was cut short due to hand and foot syndrome. We had a ct scan yesterday, bad news all tumors have increased in size and he has jaundice. January 2 and 3 we will be going back to our original chemo treatment. Hopefuly this will shrink the tumors and relieve the jaundice.
Sorry this has been so long but alot has happened.
Posts found: 17
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