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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: 14
My mother n law passed away this past Thursday just 8 weeks after being diagnosed. I just wanted to thank all of you for your kind words and support through this horrific journey. Take care everyone- you will all forever be in my thoughts and prayers.
I don't think there is any room for judgement in regards to this story. I don't believe human suffering at the end of life should be something we just accept. I do feel that if one has a terminal illness, they should be able to chose the time of their passing. I hope Randall rests in peace.
Thank you so much ladies! I can always count on good prayers and support here
For those who don't know me yet. My mother n law was diagnosed 5 weeks ago with inoperable, stage 4 CC. This past Monday she had an internal stent placed, as well as a feeding tube. My MIL hasn't been able to eat in 6 weeks, hence the feeding tube. She was discharged from hospital on Wednesday. Yesterday, I visited her around 10am and noticed she was having difficulty breathing. Long story short- she was taken to the emergency room via ambulance. There she was diagnosed with pulmonary edema. Pulmonary edema is caused by congestive heart failure. Also, they found a "good size" clot in her left ventricle.
I just can't believe this has all happened in such a short period of time. Does anyone have an experience similar to this. Or know someone with similar situation. This is just crazy! Now in addtion to her heart failing-prob a result from tumor, we have to worry about this clot. If the clot breaks off, she will have a stroke and die. It's just all too much.
Thanks for listening,
Hi all. So they were able to place the stent, but they also put in a feeding tube. It was suppose to be an outpatient procedure, but she is still in the hospital. She can't poop and is really weak. My husband called the onc today and asked if he could please do a CT while she is in the hospital so she doesn't have to go back later this week. My MIL also told my husband that she doesn't think she could do another round of chemo, which I couldn't agree more with!
I guess we wait for the CT tonight and see what the doctor says. I'll keep everyone posted and thanks again so much for all of your support.
Ilias- I just wanted to say welcome to this amazing support group. I sadly don't have a positive story to share. My mother n law was diagnosed on Sept 5 w/ Inoperable, stage 4 CC. She is 66 y.o. She just finished her 3rd round of Oxilplatin/5fu intravenously, but it is now being placed on hold due to her increase in pain, an occluded bile duct, and elevated labs.
This has been a very hard thing to watch. I am more and more sad as the days go by because for our family, I feel this is definitely the beginning of the end. But this is my experience. Many people on this board have survived years with this cancer. Every person's body reacts to chemotherapy very differently. There are definitely commonalities from story to story, but the the story themselves are very individual.
I want you to know that you are not alone. I am so so sorry that you and your family are having to go through this.
Please keep us posted and I am sending good prayers and thoughts your way!
Thanks so much ladies. We will know more info this afternoon. I will keep you posted. Pamela- I checked out your blog...it's amazing. Your daughter is a lucky girl to have such a terrific mother.
Keeping you all in my prayers,
Thank you all for replying to my last post. It means so much to me to have all of your support. Lainy- you really are fantastic. So my MIL finished her 3rd round of chemo last Thursday. They did a blood test and that afternoon called her and said that she had to see a GI doc to see about a stent being placed. Her labs were elevated. The tumor appears to have grown larger and is now occluding one of her ducts. Chemo is on hold until we see if stent placement is possible and another CT done. The GI doctor was very direct and told my MIL and FIL that if the blockage was too high, that placing a stent would not be possible and that there was nothing left to be done for her. Even if the stent is able to be placed, I'm not sure if they will resume chemo since her symptoms just seem to be worsening.
I saw my sweet MIL today and I was saddened as she appeared slightly jaundiced to me. She didn't leave the couch all day, said it was nearly an impossible chore just to take a shower, and has only been able to have 2 sips of a shake all day. I am so so terribly saddened.
My husband and FIL seem to be a little more in touch with reality, which is good. I am just still so blown away how rapidly she has declined. This cancer is so so horrible. I am just so heavy hearted. I love this woman and seeing her decline like this is heart-wrenching. Her pain increased last week and she is now on 2 Fentanyl patches and 3 percocet as needed. I just wish she would go to the outpatient palliative care people at UCLA. What is the next medication used after the Fentanyl patches don't work anymore? Morphine patch? IV Morphine? Are we there yet?
Thanks again for all of your support...I truly mean that from the bottom of my heart.
I haven't posted for a while, but I am so frustrated and overwhelmed feeling that I have to vent. SO it's been 5 weeks since my MIL was disgnosed with inoperable stage 4 CC. She just finished her 2nd round of oxi/5fu. She takes percocet every 4 hours and is on a fentanyl patch because her pain is so bad. She also hasn't eaten solid food for almost 5 weeks ( except for 1/2 a bowl of cereal 2 days ago) She says that she just can't eat...just sounds too awful to put food in her mouth.
This waiting game just sucks!!! I HATE IT!!! I just want some answers and I feel that the oncologists we have met just sugar coat everything. I know that we have to be positive...I am trying, but I am a nurse and also realist and I just don't think things are looking good. I absolutely HATE being the "medical" person in this situation. Please don't think I am this dark cloud. I DO believe in miracles. I AM the "HALF-FULL" person!!!
I know that denial is the first stage of grief, but I feel like my husbands' family just needs to be a little more realistic.
They bought $500 tickets to see Barbra Streisand in a month from now, but didn't get her a box where she can possibly bring a wheelchair. She can't sit up longer than 5 minutes right now because of the pain, but they expect her to sit through an entire concert? When I mentioned getting her a reclining wheelchair for the concert- my father n law looked like he wanted to rip my eyeballs out. Once again- I'm the "negative one" in the family. I just want her to be able to enjoy herself. I told him that if I had a broken leg and wanted to go to a concert that I would go in a wheelchair too. What's the difference? She is sick! This is just so hard. SO HARD!
Do they wait until the 8 weeks is up to do another CT? Did anyone ever have a doctor say the chemo was working or not workng before the whole regime was over? I am rambling and I am so sorry. I know there are no exact answers and I don't really expect them...just had to vent
Thanks for listening,
Thanks Lauren. I guess we just have to wait and see. I HATE this waiting game...it is so horrible! PLease keep us updates on your mom. I would love to know the results.
Well, I finally convinced my husband's family to obtain a second opinion. The doctor concurred that the 5-fu/oxali combo is the way we should go. I am worried though, my MIL finished her first round last Sat. She is so weak and in so much pain...I just don't know. She has now not eaten solid food for three weeks plus (except for the night she ate a pot brownie and woke up wanting pancakes). She has completely lost her appetite. Her pain is not great. She is so uncomfortable when sitting, that she spends most of the day laying down. She is still on fentanyl patch and percocet every 4 hours. I referred her to an outpatient palliative care team who would help her in conjuction with the chemo, but the family hasn't called. Her white count increased from 10 to 15,000, which is elevated. She has no signs of infection, so I am sure it is the tumor. Is that a normal occurence?
She goes in for her second round next Tues. I was wondering if any of you can tell me around what point they can tell if the chemo is working? What isn your experience? Do they just wait to see if symptoms subside/worsen? or do they do frequent CTs? I know the whole regimen is 8 weeks, but I can't imagine waiting that long.
Thanks guys! I have told them to get a second opinion sooner than later. I have called everyone I know and received a number credible references for them to see, but as they say...you can lead a horse to water, but you can't make it drink.
Just frustrating for me. I am a fixer...a mover and shaker and in this situation my hands are somewhat tied. I love her like my own mother, but when it comes down to it...she is not. I don't want to over step my boundaries. I have already been labeled "the negative one", when really I just want want to be realistic and have the correct information so we can have the best possiblt outcome.
Thanks again everyone,
oh and...my name is Lindsy
Thank you, thank you, thank you for your post! My MIL is 66 years old and I would not consider her a "healthy" person. She is not an active lady, has beginnings of emphysema from smoking, and now weakend from pain and not eating for sometime. The onc told her 4-6 months if she did nothing.
I got in touch with the outpatient palliative care team at my hospital and they said that they could work on her pain management, even if she decides to go through with the chemo. I think the palliative care team would be a great benefit to increase the quality of her life. Support not only for her, but for the entire family. I passed the info on to her- hopefully she will utilize them . I keep telling my husband's family that they must not be complacent during this time, but rather extremely pro-active and assertive about her care. I did tell my MIL to ask ther onc tomorrow.
We will see!
I am new to this site and think it is wonderful! - BTW.
My mothr-n-law was just disgnosed w/ stage 4, inoperable CC last week (multiple tumors in the liver). She is on a fentanyl patch and taking percocet because the pain is so bad in her abd. She has not been able to tolerate solid food for a couple of weeks now. Liver enzymes still normal;no jaundice.
I am frustrated because the oncologist we went to for her diagnosis informed the family- " Don't worry, I am not about to drop the ball, tell you to go on that last family trip, etc. We are going to FIX this." Seriously??? He acted like she had a broken arm! Have any of you experienced a doctor like this?
I am a registered nurse and from my own reserach and speaking with more than a handful of physicians including Anesthesiologists, pathologists, and general practitioners, I know that this cancer at this stage is incurable.
She begins IV chemotherapy tomorrow (5-FU and oxyplatin? ) Oh and BTW- the doctor made Chemotherapy sound like a walk in the park too- " only 5 % hairloss, maybe a little nausea- which we can give you medication for, and in general patients do very well with it ". The patients and family friends I know who have undergone chemo say it SUCKS!
How much longer will her life expectancy be doing chemo? How will the quality of her life be? Is it worth it? My biggest concern for her is upholding her quality of life.
I would so appreciate any comments, personal experiences, information and advice. So sorry for the rambling, but venting to all of you made me feel better
Thank you ,
Posts found: 14
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