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La fundación de colangiocarcinoma (CCF) ahora ofrece servicios de traducción en Español.
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Posts found: 1 to 25 of 65
Welcome to the club Eleanor! You've found the rite place where u'll meet alot of great people who will always provide great supports to you. Hello everyone, I'm back here to tell everyone that I'm doing good. It's been 1.5 months since mom passed away. Everyone in the family is doing much better than I thought. I didn't get a chance to read about the "First standard treatment improves survival ..." but I'm glad they finally have something as standard treatment.
Thanks everyone! I feel much better now after reading your posts and I'll be continuing to check back in here.
Mom is resting in peace
Hello everyone! The moment which I was really scared of to see it coming had finally came. Mom passed away yesterday around 6:25 pm after about 6 months battling with cholangiocarcinoma. I'm still trying to get used to accepting the fact that mom is gone but I know the day will come. Yet, I try to be strong and will be strong 'cuz after all, mom in heaven wouldn't want to see being weak anyway. I'm trying to be positive. In a way, mom doesn't have to go through the pain she was having so I'm happy for her. I'm sure she wanted to live longer too but her quality of life was bad prior to her death. Luckily all 7 of us were there before she passed away. We stood on both sides of her bed. WE also had the monks to pray for her (our tradition). After she passed away, we (children) took turn praying for her for 8 hours straight till 2:30 am in the morning. So in a way, that would make mom happy for sure to have her lovely children did that for her which is priceless. Every important things that mom and us needed to tell each other had been said and done so there was nothing left. In a way, we're very glad and more importantly, mom was gone without any pain thanks to the pain meds that kept her sedated and pain free.
I am very glad my siblings are taking it better than I thought. At first i was very worried for my brother and all my sisters 'cuz we all love mom to death. Who wouldnt love mom anyway being a great mom and a great person as she was. Well I should really say "is" 'cuz mom will always live in our hearts. She's a great role model for us to follow. Yeah, I'm very glad that my siblings aren't as depressed (I hope they're not hiding it). I was worried about how they were gonna deal with this but I'm glad they're taking it better as I kept convincing them that it was better for mom that way.
As for me, I'm slowly accepting the fact that mom is gone. It's sad to see that but that's just human's nature. Everyone was sent to this world for a period of time and would be taken back. After all, if everyone can live forever, we would be running out of lands to live. I'm reminiscing every single moment we had with mom. I'm kinda scared to wake up 'cuz I would see the reality is that mom is no longer there. However, I'm bleshed to have mom as my mom. We had a great time together whether it was good/bad or happy/sad. I treasured every single moment. Also, we're glad that we were able to go on a few road trips with mom up north to see a Chinese doctor which we believed could help mom with her cancer. It was a long road trip and it was totally worth it 'cuz of the moment we were with mom. I'm sure in her heart, she was very very happy. She kept telling us time over time. Money wise, we're not rich all anything but she's very very proud to have us children like she did. She said she had alot of pride in that even some rich parents can't get. The love from us for her is priceless and I'm glad she appreciated that and she is very proud of us.
Anyway, I dont know what else to say now but dont worry everyone. I'm staying strong and will be strong. It's kinda hard to accept mom's gone but eventually I will. I still have school to worry about and I know mom doesn't want me to break down just like this. She know her son won't be that weak. She really wanted to see me graduate and was really hoping to live till then but destiny doesn't allow her. She'll be seeing that in heaven and I will graduate and make her proud. Alrighty, I wish everyone a good day! i will check back later and I really really appreciate everyone's caring and praying for mom and our family. This is one of the best forums with all the lovely, nice, and caring people. God will bless you all!
Another day praying for mom and everyone!
Thanks alot Marions and nice talking to you again earlier today.
Thanks Darla and everyone in here. Once again, I'm glad to find this forum and although definitely like Lainy said, no one wants to be a member of this club, but I really feel the warm and kind hearts from everyone in here. Anyway, mom was doing better when we left the hospital and i'm glad. Seriously, every single day, we're really worried and dont know what will happen the next hrs or next day. God, please helps mom and every single patient to get better and soon will be discharged without any discomfort.
I have bad news. The culture of the fluid came back and it was negative. They ruled out everything else and thought that there must be an actual blockage inside her small intestine which required an operation to remove it. They opened up her abdomen and cut off the part where it caused the blockage. As he opened it up, he found that tumor had been spreaded everywhere there. Although he cut off that part, but he doesnt know how long it would be good for and when another blockage will present.
So today her abdomen got big again. she couldnt pee maybe due to the current medications/condition. They're just monitoring her condition. Earlier in the afternoon when we told her we were going to eat and would be back, she was conscious at that time. Although couldnt talk, but she held our hands as giving a sign to tell us to stay. We asked her if she wanted us to stay and she was nodding. We asked her if she felt very uncomfortable and she was nodding. We were really scare that god would be taking her away from us. About 15 minutes she was feeling much better I guess. She's now sleeping and her condition was much better than earlier. However, we're very scared and we don't know when the scary moment would come back. Yesterday when we found out it was just a blockage in her intestine, we were happy in a way thinking that would take care of the problem and she would soon be discharged to go home. Then the bad news just came after the surgery. We're all very depressed. I'm praying everyday n hope that she doesn't have to go through all the tortures. She's a great person all her life and she doesn't deserve to be tortured like this.
Thanks for the info Barbara. I would like to know how long was your stomach being distended before it got back to normal? Did they have to drain the fluid out while you were being treated with the antibiotic? I wonder if mom's distended stomach is ascite but I really hope it's not.
Mom was transferred to ICU on 3/31 when she had a hard time breathing. They had to intubate her. They had to drain the fluid from her intestine (wasn't just air) and came out to be around 2.8 Liters of fluid. They brought it to test but the result hasn't came back yet. They treated her with broad spectrum antibiotic with Flagyl, Zosyn, and Vancomycin. Her wbc was 22 but went down to 12 today. Once they get the result back, they'll streamline it down to more specific antibiotics. They still dont know what really cause her distended stomach yet. They continue to take CT scans everyday trying to trace down what cause the blockage. They said their last option would be cutting it open and physically see what causes the blockage but they really want to avoid that. As for now, it seems like they'll have to keep drawing out fluid from her intestine everyday the fluid couldnt be get rid off by her own system. I wonder if anybody experienced this before and how it was treated?
Hello everyone again,
I had been very busy but here is some latest news and they're not good. Mom was sick more frequent lately with nausea and vomitting plus some pain at the site of her bile duct catheter drainage. My brother & sis took her to USC a few days ago. They did some lab work and it showed that the two spots in the lymph node shrunk a bit/blurrier (which is a good sign I think). However, we don't think she can tolerate a 4th cycle given her current health. Her tummy got bigger and the newest lab show that there is an infection inside. A few CT scans seemed to confirm that there is an ulcer in her colon (from what my brother told me). They're currently have a small tube connecting through her nostril to the inside of her stomach to collect the liquid from there and will test it 2morrow or something. I wasn't here when the doctor explained what was going on and what they were going to do so I don't know if what I am saying is right or not.
She looked pretty depressed and we all tried to convince her not to worry at all. But still, being a great mom as she is, she feels really bad for us that we have to take care of her. I told her that she should just relax and not thinking about anything at all. She convinced me that she's very happy having us as her children and she never had a hard time raising any of us and didn't really have to take care of her as much as we're taking care of her now. OMG, i almost broke out crying several times (now too) but I try holding it back so she doesn't see/know it. Anyway, I guess I'm just gonna stop right now 'cuz I'm getting emotional. I need to stay away from thinking about it so I dont end up crying in front of her.
Honestly, from what happened so far, I don't see her oncologist cares much except maybe for the money he got. When we told him his assistant that mom was hospitalized, he didnt even come by to check out how mom was doing. He didnt even call us to keep him updated on the status and this is the 3rd time already. Maybe he's extremely busy but if I was a doctor and knowing my patient go through that, I would care more than just that. Seems like he only cares about mom would get her chemo cycle regardless of what she went through after each chemo cycle.
Thanks for the info. Sorry that i wasn't able to get on here. I was too busy with school and was spending time with mom in the hospital. As i mentioned previously, after her 3rd chemo, she was constipated and couldnt pee at all although she did consume alot of watever. They drained her urine out and she was ok. However, on Sunday's nite, she had severe back pain and it just kicked in so fast (from mild) and she couldnt breathe. We called an ambulance and they took her to ER and had been giving her morphine to treat her pain and IV fluid. Anyway, she's ok and still has mild back pain. They'll discharge her 2morrow. After this 3rd cycle, she doesnt wanna get a 4th cycle any more 'cuz she was hospitalized after every chemo cycle. And seeing her going through all of this sucks 'cuz she can't tolerate it at all.
Mom just had her 3rd chemo cycle. Yep, we delayed it then my brother brought her to see dr. el khoeri for a check up on Monday 3/2, that same day he encouraged mom to do it and said that her tumor marker had gone down. I wasn't there with them so i didnt know. We requested to get a copy of the lab on Tue but the CA value wasn't in there. I wonder if he lied 'cuz he wanted mom to continue getting treatment.
Mom couldn't pee at all on Tue so we had to take her to the hospital and they had to connect a catheter to drain her urine out and until now she still have it and my bro will take her to see a kidney doctor tomorrow. She had no bowel movement either. It really sucks. It seemed like she's being tortured with different stuff every time. She had mild back pain this time so it's not too bad. The only concern we have for her now is her bowel movement and urination. Anyone has any comment about this and any recommendation? Thanks!
Just wanna keep everyone updated. Mom delayed her 3rd chemo cycle on Monday and she's doing fine at home. I'm glad to see her feeling much better. Even though the back pain is somewat bothers her a bit but then she has much more energy than last week.
Thanks for the info! As for mom, we'll respect her decision and wait for few days to see what she wants to do. She's supposed to have her 3rd cycle of chemo this coming Monday but we'll just delay it. I mean there is no point to ask her to do it when she hates it so much. I mean ever since she was on 2nd cycle or even first cycle, there wasn't been a day that she looked happy or active and I'm sure that has to do with the side effect of the chemo.
Mom was discharged yesterday and she's ok now. She's thinking about delaying the chemo. I know it's not a good idea but then the chemo really decreases her quality of life and it's really hard to see her going through all that. She has severe back pain and oral thrush. I wonder if anyone had the chemo also had severe back pain? I'm glad that she's home now.
I'm so sorry to hear that from you Barb. Hope things will get better for you.
Mom serum creatinine went up from 2.2 to 2.4 but then it went down to 2.1 at 6 am (when they ran the lab) on Tue 2/16. However, she couldnt pee at all and therefore they had to use the catheter to drain out her urine. Hopefully, it'll get better 2morrow. Class starts again for me so that means i wont have alot of free time any more. Anyway, i'll keep everyone updated.
Yeah he has been notified but he wont have office hour until Tue. I spoke to his fellowship doctor and she told me that the doctor at current hospital should be able to prescribe her lidocaine for the mouth sore/mucositis and make sure she gets enough pain med after discharged until mom sees Dr. El khoeuri again. Mom is stable now although still in ICU 'cuz they want to monitor her heart.
Mom is currently at Greater El Monte hospital that is about 5 mins of drive from the house. She had a hard time breathing last nite so we ended up calling the ambulance. She's stable now. Her potassium level was 5.9 so they gave her the kayaxelate to remove her potassium. She was also dehydrated (which possibly cause her serum creatinine to be at 2.2) so they gave her some IV. She also had severe back pain so they gave her some morphine.
This is the 6th day since her second chemo cycle. She seems to have a hard time this time. Her back pain is moderate/severe, very fatique, and she started to have oral infection (mucositis) for about 2 days. Any advice or recommendation of what we should do? Thanks!!
so today I took mom to USC again to get her 2nd chemo cycle. Mom had blood drawn again and lab came back with her Scr of 1.8 and blood of 7.4 so they had to give mom 2 units of blood. Other labs looked fine. Dr. El Khoeuri said that she looked good and believed that after blood transfusion, her kidney should get better. He said that it's encouraging with the look on mom's face because she looked stronger/healthier than she was before. He would do a scan after the 4th cycle 'cuz at this point, it's hard to tell if she's responsive to chemo or not. I told him about the breast milk but he doesn't believe in that and therefore wouldn't write a prescription. I really want mom to try the breast milk though 'cuz even if it doesn't work, it wouldnt hurt either except we just have to pay for the milk.
I wonder if anybody heard about human's milk can treat cancer? I just heard that from a friend and her mom had nasal cancer. She doesnt know if it's really helping or not but she's on-watched right now. Her mom was treated with chemo but it wasn't responsive so the doctor had to max out the dose. At the same time, she heard about human's breast milk so she was giving her mom that every day (3 oz). After 6 months of treatment and concurrently taking human's breast milk, her mom is now on the 6th month of chemo-free and on watched. Doctor said that it was suppressed.
I hope you're doing good and things are going well. I'll keep everyone updated.
sorry for updating late but I just finished my final. Anyway, mom had her chemo combo of oxaliplatin, 5-fu-, and leucovorin. She also had the external drainage to remove her bilirubin on Thursday. She was in pain that day but feeling much better now. She has been scheduled to come back on Feb 9th.
Thanks for the info Mary. I think they'll drain the bilirubin out first b4 starting chemo. The dr. knows that it has to be under certain level to start it. Anyway, I'll have my brother to ask the dr. El Khoeri then. I guess the only way to tell now is to do a scan to see if the metal stent slipped out.
Bad news, today mom went to see Dr. El-khoeri again and had her lab drawn and her bilirubin went up to 7.4 now. I'm worried because I was expecting her bilirubin level to go down after getting the metal stent. The thing that frustrated me more was her bilirubin was 3.1 the day before that. I don't know what happened. Dr. El Khoeri will have mom to start chemo on Tue with the 5 FU and oxiplatin (my brother told me). They'll try to drain some of her bilirubin out prior to that. Tomorrow they'll make a "pic placement" for her. According to my brother, a pic placement is a line where they'll transfuse the chemo.
Too bad for me that final is coming next Thurs and class is very busy at this point so I can't really go with mom to the hospital. Maybe I can go with her next week when we have 1 day off to prepare for the final.
Posts found: 1 to 25 of 65