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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.
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Posts found: 1 to 25 of 26
Thank you everyone. Her birthday was difficult to handle. I got all of her kids and grand kids together at the spot where we sprinkled her ashes and we released balloons with notes to mom in them. Then we dropped some of her favorite flowers in the water. I miss her so much. I am glad she is not in pain but I have so many questions !!! Wish I had some answers.
Mom passed away at home on 6/18/12 at 4:10am in my arms. I am crushed, angry, depressed, confused....... I hate this cancer with all my heart for stealing my mom so young. She would be turning 56 on September 18th.
Thank you so much for all of your kind words. I am trying to take each day as it comes. I am thankful for the time we have with Mom.
Mom is a very brittle diabetic now so We can't do the carnation instant breakfast with her. But thank you for the suggestion. That is what gave us the idea to try the glucerna. It does seem to be the one thing she can consistently keep down.
Life has been hectic. Mom started chemo. She has had almost a full 2 week round of gemcitabine, xeloda and avastin. She started to get an infection in her bile duct again but we caught it early and were able to treat it with oral antibiotics. She is having so much trouble with nausea. We have found that glucerna shakes help her but it is so expensive. Medicaid refuses to help cover it. She has lost >40 lbs now. She is determined and believes that god can heal her. The text word at church the week before chemo was, "I can heal you." We are going to believe that and fight to keep her going until he can heal her. I have also found that I am becoming a hypochondriac of sorts. Every lump I find or different pain I have is sending me into panic mode. Every time I turn around we have some other issue come up that requires large amounts of money. Some days I feel like I am drowning. I really need to take a deep breath and put my trust in God. I know he will help in his own time and in his own way. I need strength. Please keep my mom in your prayers.
Met with Dr Iyer today for chemo options. It looks like she will qualify for the clinical trial for gemcitabine, xeloda and avastin. If insurance gives the ok, we will start next week. Please continue to pray for her. Thanks again for all of your support.
Mom is home!!!!!! Yay! She is tired but finally home. Life is so much better with her in it. I am so thankful she is doing better. Now to set up an appointment with the oncologist to discuss clinical trials.
We are hoping for mom to come home tomorrow. Please pray that all goes well and she can come home to us. She will be on oxygen for a while and she will be on antibiotics for a while but we are glad she is still with us. Her new stent seems to be working so far. They finally identified one of the bacterias from her bile duct but no luck on the one from her sputum yet. Thanks for the prayers and virtual hugs
Thanks everyone. She is finally out of ICU and on a regular unit now. They still cannot identify the bacteria they found in her bile duct or in her sputum. They have used 4 different antibiotics now. She is drinking liquids finally and her jaundice is clearing up. One day at a time......
Momis stil in the ICU. She got a metal stent put in. She has a very bad infection in her bile ducts. They can't even identify the bacteria they found so she is on 4 different antibiotics and an antifungal. Her central line clotted and had to be changed. She seems to bein a positive frame of mind but I am a nervous wreck. Please keep the prayers coming. Thank you again for your kind words and prayers
I had to rush mom to Roswell yesterday. She spiked a temp of 105.4 and her blood pressure plummeted. Her stent is blocked and it caused sepsis. She is in ICU and will hopefully get a new stent and an external drain placed for her liver today. Please keep her in your prayers.
Thank you very much. I think it was harder to handle because he had told us he thought he could cure her with the whipple. Then the night before he drops the bomb that there not only is not a cure but she has a short time left. I do appreciate all of your support and prayers.
The surgeon called and told us that the laparoscopy showed a mass in the liver, a mass on the pancreas and the washing from her abdomen were positive for cancerous cells. She is now inoperable, stage 4 and not even a candidate for radiation. He said we can try chemo but he gave her maybe a year to live if we are lucky. I am not ready to lose my mom. PLease keep us in your prayers. We hope to hear from the chemo specialist this week to tell us where to start.
Thank you so much. I am very stressed out. My sister's mother-in-law passed away on Sunday very unexpectedly. Now the funeral is the same day as mom's surgery. Life never seems to get any easier.
Mom had the laparascopy yesterday. They found a mass on her pancreas. They said we will find out the biopsy results on Wednesday. The whipple is still set for Thursday as of right now. Please keep up your prayers for her.
Mom finally got through all of the preop clearance tests. Her ca19-9 was 1000. The ct scan showed no visible mass and no metastasis so they are assuming the cancer is confined to the inside of the bile duct. She will have a laparoscopy on Monday to do some random biopsies and washings. Dr Kuvshinoff is perplexed as to why her tumor marker is elevated if no mass was seen. The whipple is set for Thursday. If all goes well she may not even need follow up chemo. Please keep her in your prayers!!! So far so good.
Thank you so much for the positive words of support. It means so much to us. Lainy, how is your husband dealing 6 yrs after the whipple? They gave us a limited chance of a 5 yr survival after the whipple.
We met Dr Kuvshinoff today. He was very nice. He told us that mom is going to have the whipple operation. She is high risk due to her pre existing medical conditions so he set up quite a few pre surgical tests to make sure her body will be able to handle the surgery. He did not give us a stage as he wants to biopsy the lymph nodes before he stages it. He also said he is not sure yet if it is cancer of the bile duct or cancer of the pancreas. He ordered a ca19-9 blood test to see if it is elevated. He did say that she will most likely need post surgical chemotherapy and possibly radiation depending on what they find during surgery. Dr Kuvshinoff said he has performed hundreds of whipples, at least 35 a year and the mortality rating is 2.6% in a 30 day period following surgery. His confidence was very reassuring. We are cautiously optimistic.
My mom will be 55 on September 18th. We hope to find out the size of the tumor and what stage she is tomorrow. They have not told us anything except that she has it so far. The GI specialist said he did not see any evidence on the ERCP that it is effecting the pancreatic duct or the pancreas. I will give an update tomorrow. I have to work after I go to the appointment so my post may be pretty late at night. Please pray as much as you can for my mom. We could use all the voices to god's ears as we can get. Thank you.
Thank you so much for your kind words of support. I will check back after our appointment on Tuesday to update everyone.
Thank you pcl. I am getting more and more nervous as Tuesday approaches.
Thank you Lainy. My mom was already a type 2 diabetic prior to these issues but she was very well controlled. We were not sure why her sugars jumped so high. You have been very helpful. Thank you so much.
We have been told that the doctor she is seeing is a specialist in cholagiocarcinoma. Lainy, did your husband's pancreas recover from the dye damaging it? Her blood sugars are still in the 400's.
She will be treated by Dr Kuvshinoff at Roswell Park Cancer Institute. They found she had a stricture in her bile duct during an MRCP. They placed a plastic stent and took brushings while they were in there. The brushings came back positive for malignant cells. The CT scan did show a tumor on the outside of the common bile duct. The GI specialist said it did not look like it was effecting the pancreas or the duct that leads to the pancreas. She developed acute pancreatits and an ileus following the MRCP and has been in a lot of pain. She does not look jaundiced anymore and her liver enzymes are slowly returning to normal. Thank you for your kind words and advice.
Victoria--- Who is Ned's Oncologist? We are in Buffalo too and my mom was just diagnosed on 8/18/11.
Posts found: 1 to 25 of 26
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