lisas
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I’m all for blasting that blasted bell curve off the chart. Welcome and, yes, hope you and your mom are here for the long haul, along with a lot of the rest of us.
Ooh, sorry they got turned. I imagine that was really uncomfortable. Replacing them isn’t as bad as getting them in the first place. Says the woman who had to go to the ER last night with 102.9 fever and a likely tube infection. Today, on cue, one started leaking. So, I’ll be going for replacement set #4 tomorrow. I keep telling my very cute interventional radiologist we have to stop meeting like this!
Lisa
Margaret,
I missed these earlier posts. I think we were at my in laws, who don’t have internet. I’m so sorry about the sudden loss of your husband, John. I ran across something you posted tonight and looked at your earlier posts.
I have to tell you, you are the first person I’ve seen here from the Dallas area other than me.
While I haven’t lost a spouse, I lost my 48 year old brother in March 2011, very unexpectedly. Not cholangiocarcinoma, but, unknown to us, he had been diagnosed with type 1 diabetes (in his 40’s). Unknown to him, he had acute pneumonia and the combination was fatal and fast. I had a police officer show up at my door to tell me he had been found dead in his home in Lake Tahoe and we had to wait on his autopsy. I only tell you this to say that I understand sudden, unexpected loss and the completely unreal ways your life changes as a result.
Several things helped me walk through those early days. One, a friend told me grief is a process, not an event. That is so so true. Second, I did have signs from him and I believe they were to let me know he was okay. Third, it helped me to talk about him, a lot.
So, if you ever want to meet for coffee and talk, I am here. I’d be happy to meet you at a mutually convenient place. Your husband was only two years older than me.
Lisa
Again, showing why it is so important to have someone kniwlegable (wven if not actually in the medical profession) with the patient to act on their behalf when they can’t. My very nice, but very young hospital internist, who only came to treat me because I was so dehydrated and nauseous back in October and didn’t understand my cancer would have treated me day after day for ordinary nausea BUT FOR my husband getting involved and questioning why he hadn’t talked to Dr. X and Dr. Y. Clearly. He didn’t know either of them. They got involved and problems were figured out within an hour. I was too sick to stand up for myself at the time.
Lisa
Wow. That story is so appalling. I believe you and/or your spouse/significant other/designated family member HAS to advocate for you.
I thank my lucky stars my medical team is the opposite of what was described.
I’ve been told it may take me several weeks to get past the exhaustion that comes with radiation. He’s still pretty early post-radiation, but I’d still talk to his doctors about what you are observing.
Hi, I have a klatkskin tumor as well. Getting my bilirubin number down was the only relief I got and my itching was horrible. But, with the drains that was pretty fast and I haven’t had the itching since. My dr did prescribe something to help me sleep (otherwise, I was up all night scratching). That really helped until my bilirubin dropped enough that the itching went away.
Best wishes to your dad and you for fighting this thing.
Lisa
Hi, Nan,
I’m sorry you had a reason to find us, but it is a great place to get support for anything. I wish I had some suggestions for things to make things better. Hopefully some members with longer experience with this will be along. I’ve been through 4 gem/cis cycles and I haven’t had the problem with side effects that krisV mentions. But, I’m an ear to listen. Just know you aren’t alone.
I would think (quick disclaimer I’m not a doctor, just another patient), that jaundice from a blocked bile duct wouldn’t come and go. I’d watch his color, and call your doctor if he’s yellow again. There are a number of posts about the blockages and drains they can do and we can point you in the right direction if you need it.
Lisa
Glad to see you posting post surgery. I’m thrilled for you. Do you have your caring bridge site posted? I follow caring bridge a lot and post there too. Just added my link on that section.
Lisa
Eta: found it. Clever deduction from seeing your name on posts and your screen name. Will be following your recovery and hoping to write a similar story one day. Well done!
Well, I’ve turned my profile picture purple for World Cancer Awareness day today on Facebook and my cover photo to the CC Foundation page for the month. Let’s make some noise and get some attention to this bloody beast of a cancer.
https://www.facebook.com/lisa.stegall
dani_ya wrote:Hello,I’ve been to this forum many times. Thanks to all for sharing their experiences. I need help for my mother.
She was diagnosed last May with extra-hepatic cholangiocarcinoma centered around the gall-bladder. The tumor is small (2 cm x 2 cm). There was no evidence of tumor spread. They didn’t perform a surgery to remove the tumor because it involved the blood vessels in that area. She started Chemotherapy (Gemcitabine and Cisplatin). She finished five and a half rounds. Then she had radiation with oral chemotherapy Xeloda. She finished six weeks of radiation in November. She hasn’t had treatments since then.
The scan they did in August during the chemotherapy showed that the tumor had shrunk, but still not removable. The scan she had in late December showed new nodules in her abdominal cavity. They repeated the scan at the end of January to monitor the new nodules. The nodules increased in number and in size.
The oncologist offered us three options. She could do nothing. She could do second chemotherapy (Xeloda + Oxaliplatin). She could do a clinical trial. He didn’t recommend doing a clinical trial because the chance of an experimental drug working is less than the standard chemotherapy.
What is the best course? I think doing standard chemotherapy or a trial. How soon should we start? Is there an on-going/upcoming trial that’s been beneficial? Is the recommended chemotherapy harsh?
Thank you very much for your help.
I don’t know how old your mom is or what her general health is and the decision on what to do is so personal. Has she expressed an opinion on what SHE wants?
From what I understand, a lot of the trials take people whose first line treatments haven’t worked.
I think treatment affects everyone differently. I also have extrahepatic CC and mine is wrapped tightly around my duct and veins and not, so far, operable. I’ve had gemcitibine (a/k/a gemzar) and cisplatin, 2 weeks on 1x a week and then 1 week off since November. It’s shrunk my tumor some, but it’s hard to measure. I’ve done it since November. I didn’t have to miss any chemo days because my counts were too low and I haven’t had horrible side effects. I’m damn lucky, but I’m also 56 and was in excellent health before this, so maybe that’s part of it. I’m moving forward with starting radiation in two weeks. I’ll continue to get chemo, although a slight variation (dropping the gemcitibine – it reacts too strongly with radiation and picking up 5FU). Our hope is it is going to kill off the tumor. Mine is slightly larger than your mom’s. If that doesn’t work, I don’t know what’s next. That’s the frustrating part.
If you start chemo and you have a bad reaction, you can always stop. My doctor hasn’t talked to me about trials yet, but I would participate in one if I thought it would help me (and others). But again, it’s really a personal decision.
Gosh, I feel so certain she has a blockage. Other than the fluids, this sounds exactly like what I went through. Are they doing a cholangiogram? I think that is what it is called.
http://en.wikipedia.org/wiki/Cholangiography
I had the percutaneous transhepatic cholangiogram, which is where they fixed by blockage by inserting the bile drains.
Sending good throughts and prayers for her.
Lisa
Kris, doing a happy scan dance here for you and Mark. I’m getting ready to do a very similar IMRT schedule, with 5FU. I’ll be going in on Monday, getting all of the usual chemo I’m getting now except the gemcitibine (my dress say it is too good a radioactive agent and makes the radiation too strong), which is why instead of it, I’ll get the 5FU. I’ll get the 5FU hooked into my port and wear the pump home and wear it until Friday, and they will disconnect it for the weekend. I hope at the end, I’ll have clean scans.
Having to drive 2 hours to the hospital every day sucks. I’m sorry you have to do that.
Lisa
