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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 29
Thank you Nancy, I admire the love you have for Doug, you are a wonderful person.
Thank you for sharing your experience Pam, mothers and daughters have a very special bond. Mom and I were so close, our bond is forever strong...
Thank you Randi.
I am very appreciative of you sharing your experience with me. I never thought I was going to have to deal with losing mom at such a young age, I turned 34 in July.
I take it one day at a time. A couple of days before she passed, I cried a lot and was worried that I will never be okay. Days after I had lot to take care of including funeral/burial arrangements, when my day is occupied then I do "okay". It's the nights that are the worst, when it's all quiet and I'm in bed tears just come out.
I started going through mom's closet and found this little doll thing I made for her when I was about 13/14. Mom always brought that doll with her where ever she went, she said it brought her comfort and luck. The day she passed, I looked every where but could not find the doll, that was very upsetting. As I was going though one of mom's purses today, it was right there in the zipped compartment. The doll will be buried with mom to keep her company.
Thank you everyone who have been so supportive through this difficult time. Mom and I were so close, I miss her so much.
My mom passed away at home yesterday at 11am. She was not in any pain when she left and I was by her side. For past few days I told her how much I loved her and she didn't have to be scared to leave. I know she heard every word, even though she was no longer able to speak, she would respond with teary eyes.
She was so beautiful and young (62), the next few months/years will be very difficult for me. I miss her so much....
Thank you Gavin and Marion, you guys give the best cyber hugs.
Thank you Percy and Nancy for your support and good wishes.
Thank you Lainy, we put the hospital bed in the guest bedroom where there is also a big TV. There is also a nice size couch positioned parallel to her bed so I can lay next to her. We have a walker and oxygen will be ordered also.
After much thought and consideration, I decided to call hospice on Wednesday. An admission nurse came by the house yesterday and talked to me for almost two hours to get the process started. They delivered a hospital bed and bed side commode the same night, I was very impressed with the speed.
They also delivered liquid pain and nausea meds last night, I'm waiting for the hospice nurse to come and give me instructions on how to administer those.
Mom is comfortable in her "new bed" and I hope she will stay that way for a period of time........
Mom grew weaker rapidly in the last few weeks and any hope of further treatments became impossible. I believe calling hospice was the right decision.
That sounds so sweet Lainy!
Thanks Lainy and Marion.
Making mom comfortable is the number 1 priority now, we want to give this disease one last fight if for some miracle her bili comes down. Although I'm not naively optimistic.
We have a visiting nurse setup with mom, who comes in about twice a week to see how mom is doing and we are in constant contact with mom's oncologist.
My aunt comes and stays with us a few days a week, this has been a tremendous help for mom and I both physically and mentally.
We went to see mom's oncologist last Friday and the blood test results for bilirubin was still rising even though there are about 250ml - 300ml of drainage daily.
We went to see IR again this Tuesday to see anything else can be done, they were able to put in a metal stent in addition to the external drain. IR doctor is not sure how much the metal stent may help. Mom is still very jaundiced and her energy level is very low. Her oncologist worries that the bilirubin may never come down to under 4 where she may try more treatments. This is my worry as well.
I called the oncologist office to get an appointment scheduled in the next couple of weeks to check her bilirubin level again.
I believe mom's cancer is very aggressive, as her CA 19 9 is now at 106056, doubled in a month.
Blood test results from today's doctor visit came back, I wish I had better news to report, but the bilirubin keeps rising. The oncologist will contact interventional radiologist to see if they can do anything else, maybe metal stents.
What a beautiful video, you are a wonderful mom!
There is not a lot of drainage coming out of her new drain, it was measured about 80ml for yesterday and the bilirubin was 11 this morning. The doctors think it may be the tumor pressing against it too much. I'm having a little hard time to deal with this, since last time (about 3 weeks ago) her bilirubin dropped a lot 24 hour after the procedure. The recent scan done in the hospital shows growth in the tumor from July 10th scan but my understanding is not by much. The IR will come by today to check on the site, and I hope they can offer some explanation.
Her extremities do not seem swollen to me and I asked the nurse to confirm also. Thanks again!
Thank you Lainy and Marion, you both are so nice, helpful and supportive! Mom has a little fluid in the lung and the ultra sound team came by earlier and said the pockets are too little for them to try and drain the liquid, they will talk to her primary team at the hospital to see if IR will be able to do anything. Will keep this thread updated with the progress.
Update from 08/06.
Mom became more yellow last Thursday/Friday and ran a fever of 102 on Friday night. I sent her to the ER to get treated. It turned out she has cholangitis again, this is the second occurrence in a month. Her Bilirubin level was at 9.5 when she was first admitted and after a few courses of IV antibiotics it came down to about 7.9. IR went in and checked her drain, they exchanged it to a bigger tube to help with the drainage, mom's in recovery now. I'm guess we will be sent home some time tomorrow with IV antibiotics like last time. I'm hoping the new tube will drain better and we can keep the infections at bay.
Thanks for everyone who have been so supportive, it is so true about this roller coaster analogy.
Thanks Marion, I will get a heating pad for mom.
Thanks Percy, I will try the herbal soup!
One of mom's fiends brought her this super mushroom supplement called yun-zhi from Hong Kong, mom takes them when she remembers. If I'm not mistaken, you are also taking this supplement. We have not looked into the herbal soups at the moment, I know she will hate the taste but I will look into it.
That's indeed very excitng for you! I am new to the site and have recieved so many help already from people on this site. Unfortunately my mom is not a candidate for transplant, but it may be a good option for those who are. Your story is truly inspiring.
Thank you for your reply, I did not think of asking about chemoembo or radioembo at the consultation today. I will for sure ask about them. I did ask about chemoembo at UCSF, her oncologist said it wasn't an option at the time, I don't know if it's because she did not respond well to gem/cis, xeloda/oxaliplatin combos? I will ask about them again at the next visit. As far as I know, mom's cancer has not metastasis outside the liver. She has this right shoulder pain, they ordered X-Rays to see what is going on there, still waiting for the results.
I've read a lot of your posts and they are so informative and helpful, I feel truly blessed that you are on this board!
Mom and I came back from our appointment with Dr Koong at Stanford, did not get the news I was hoping for. They reviewed mom's records/scans and explained to us, there isn't any radiation treatment that they can offer. Dr Koong said due to the multiple locations of the tumors, he does not have anything he can do safely and effectively to treat them. So sounds like radiation is not in mom's future.
We did get a referral to see Dr Cho-Phan who is a medical oncologist at Stanford to see if she can recommend any treatment options. We are waiting to get an appointment scheduled.
Our next visit with our UCSF oncologist is 08/06 and I will be asking about clinical trials again. Before mom's bilirubin level was out of whack, we had a visit with the clinical trial doctor at UCSF. Mom may be a candidate for the following study: http://clinicaltrials.gov/ct2/show/NCT01543763 I will ask about the trial again in our next visit.
I'm hoping between Stanford and UCSF, someone will be able to come up with a game plan. I am an optimistic person by nature, but it's getting really hard with this awful cancer.
Posts found: 1 to 25 of 29
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