lisas
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TX oncology is a good group. My Baylor dr is part of it, so I expect they communicate between Dallas and ft worth. Don’t know your dad’s age, but I can certainly respect anyone’s decision on treatment or not. Sometimes, the treatment is so hard on people and if he has other health issues, that does play a role.
Obviously, you want to keep him comfortable. A lot of people on this forum have experience with hospice care. That might be something to look into. I just don’t have any experience with it.
As far as local support, I haven’t found any. Big Baylor, as I call the main hospital, has a support group for just about everything else. So, I come here.
Lisa
To echo what Lainy said, I would encourage you to get a second opinion too. If you are in Aledo, I would consider Baylor in Dallas. I know a lot of people just assume MDA is the way to go, but my experience with Baylor has been very good and because of baylor’s living liver transplant program, they do see a lot of cc. It’s a lot closer to home.
My oncologist is Dr. Andrew David McCollum.
And, yes, when I was diagnosed (10/13), I thought I was in great shape. One day my eyes just turned yellow. Only symptom and I didn’t notice. A friend did.
Good luck. Will answer any questions I can.
Lisa
Again, since surgery isn’t on the table for me yet, my only experience is the chemo and chemo /radiation part. I’ve seen a number of chemo combinations talked about around here. One of the most common is a combination of gemcitibine (Gemzar) and cisplatin (or some other form of -platin). I did the gemcitibine/cisplatin combo for 4 cycles (chemo 2 weeks in a row, then an off week). They also gave me fluids and a steroid and anti-nausea with the chemo. I tolerated it well. After 4 cycles, my doc did a MRI/ct (I’ve still never had a pet) and felt it was working really well. Not that he could see the tumor change by the MRI or CT, but he said all the teeny tiny inflamed bile ducts in my liver had cleared up and the inflammation was gone. That and the blood numbers told him it was working.
So, instead of just finishing another 4 rounds of chemo, we moved to radiation with chemo to try to kill the sucker dead. I go to radiation 5 days a week. My chemo changed then because the gemcitibine doesn’t mix well with radiation. Instead, I’m taking something called 5FU, which I get through an infusion pump that I wear Monday – Friday. I get my cisplatin and fluids on Monday, just as I used to.
Next week is my last dose of chemo. I finish my 30 days of radiation 4/15. Then I wait a month for internal inflammation to go down before I do new scans. They will be the key in deciding next steps.
I’ve felt pretty good through most of this. Minimal nausea – that’s the worst for me. My work has been supportive (thankfully).
I asked my doctor why I’d never had a pet scan. He said that he didn’t think it was necessary. Mine hasn’t spread. He said that if he were looking to see where there was metastasis elsewhere, he’d order a pet, but that it didn’t show anything any better than an MRI or CT on the bile duct.
I agree, you guys are getting confusing info. They need to spell out what it is they recommend.
My doctor mentioned two different chemo protocols when we were starting out, told me what they were and why he recommended the one I did. Doesn’t mean if it stops working, I can’t try another one.
Good luck.
My klatskin is extremely difficult to see on any scans as well. They aren’t always a definitive mass. I guess I used to think of a tumor as something solid, like an egg. Mine is more like an amoeba – with little tentacles. My radiation oncologist showed me my scans in January and I understood why they said it was so hard to see. And, despite an ERCP procedure months ago, they were unable to get a tissue sample.
I’m all for 2nd and 3rd opinions. I had a second opinion before I started with my chemo here, because I was initially told no surgery. That doctor (Dr Chapman at Washington university/Barnes hospital) came highly recommended. He agreed with what my docs here said and I am within blocks of a major facility that sees a fair amount of this.
As to the last question, if chemo isn’t curative, why consider it? Honestly, that’s one each of us has to answer personally. I hope my chemo, etc. will lead to surgery. It may not. If not, I hope it leads to quality of life for as long as I can have it. And I’m talking years. I have young grandchildren. I have too much to do to go at 56. For me, chemo/radiation has been a slog, but I have been fortunate that it seems to be working and isn’t kicking my butt so much that it’s not worth it. That’s not true for everyone. And that’s why I think each person has to make that call. Chemo can be started and, as some have found, stopped if they can’t handle it. It is really rough on some people.
I have a friend (my age) with stage 4 mesothelioma (probably from breathing fibers her dad brought home off ships when he was in the navy). She’s opting for a naturopathic way to have quality over quantity and I respect her decision. She’s single, no kids, no immediate family.
Other than the arthritis (and, of course, the cholangiocarcinoma), how is your friend’s health. What does he think? It’s all overwhelming at times. I know.
Hi, I’ll add my welcome as well. This is a great source for info and support. I can’t comment on all your friend’s issues, but I have a klatskin tumor too (diagnosed early October 2013). I’m 56. Mine was not operable due to location (wrapped tightly around common bile duct and arteries). I have done chemo and then chemo+radiation to shrink/kill it. I am finishing up my chemo/radiation in the next two weeks. We’ll see what’s next. All that to say, chemo is often given before surgery. There are plenty of others on this board who have had chemo and then surgery (I hope that’s in the cards for me, but we’ll see). Everyone reacts to chemo differently. Some have a really tough time and others seem to not get the worst side effects. But, I do echo getting him somewhere with experience in this rare cancer.
I can also comment on the bile drain tubes. He’s not alone in having them changed out and, in fact, he’s doing good in terms of time they are in. I got the drains in mid October. I’m 7 changes in, my last was last Tuesday and it was only two weeks old. I do everything I’m supposed to do, they just get clogged really easy. There is a whole thread on the tubes in general discussion.
Lisa
I had just turned 56 when diagnosed, which I still think of as young, but out of the range of the study.
Sadly, our young friend, Christopher, passed away this morning. He was 12. The family posted on Facebook. I’m so sad that anyone gets this damn cancer, but a 12 year old is really so unfair.
Michele,
I’m so very sorry for your loss. Yesterday, strangely, was the 3rd anniversary of my little brother’s unexpected passing(not from cc). I know I walked around in a fog for weeks and months. The best thing someone told me us that grief is a process, not an event. I hope you are surrounded by family and friends for the time to come. We are here too.
Lisa
hisprazr wrote:.It sounds like there is a tremendous life change with these drains in place. He has always been an active man and worked a lot outside and in the shop, also with the cows and such. What are the limits the doctors give or that some of you have encountered in just daily living activities.Sorry it’s taken so long for me to answer. The last month has been a blur, as I had some infections crop up and was in the hospital and had my tubes changed twice.
As far as restrictions, other then not immersing them in water (swimming, bathing), none really. I don’t recommend sleeping on your side because you can bust the stitching (learned that the hard way once). Otherwise, they don’t normally interfere with my daily activities when they are capped off. I plan to ride my bike plenty when cycling season starts. They will probably keep me from paddle boarding, just for the risk of falling in the lake and dunking them. I think I could play tennis or golf okay with them. Bottom line, if he feels like he should or shouldn’t do something because of them, check with his doctor.
I think it’s interesting that treatments are so similar, yet different.
I’m getting 35 IMRT (wonder why 35 instead of 25) plus cisplatin once a week and 5FU that I wear Monday-Friday. This is the first week I’m getting the whole package as I had tube infections and fevers and dehydration and getting my kidneys recover. February was, in short, a disaster.
Kris, I feel like my journey mirrors Mark’s a lot of the time. Which I find strange, since my dear brother was named Mark. You guys definitely alerted me to ask how much was too much to drain from my bile bags. Unfortunately, no one believed I could possibly drain enough to get severely dehydrated,but I did and spent 8 days in the hospital getting that straightened out.
Anyway, I started my IMRT a week ago and my ca-19-9 marker has gone up on my last lab reports. My oncologist said not to worry about it. He isn’t. He looks at other numbers – the bilirubin, alk phosphatase and others I’d have to be looking at to remember. It freaked me out to see the ca-19-9 go up when it had been so steady, but I’m gonna trust the other numbers instead. I just lay on that table and sing a little song in my head that goes “die cancer cells, die”. It has many variations and verses and can be sung to the tune of many songs.
Hi. I’m jumping in late to this because, ironically, I’ve been in the hospital with an infection and fluid buildup (like 20 lbs of it). I commented to one dr that I must have been impregnated with an alien baby it happened so fast.
I’m sorry your dad is having problems. One thing I’ve learned this week (and it may or may not help you, but I throw it out there anyway) is that in my case, the fluid buildup, which is primarily in my abdomen at this point is much more likely the result of freaking my kidneys out when I got very dehydrated because my biliary drain tubes/bags were pulling so much fluid out of my system than related directly to the cc. So, the lesson I learned is that my oncologist pulled in a multi-disciplinary team – infectious disease specialist and nephrologist. They are telling me my fluid will go away, but slowly. It is not ascites.
Wondering if your dad’s drs are using a multi-disciplinary approach?
I also wanted to comment on the cold weather issue. While it’s true that he’s not going to be sitting in a lawn chair in the snow, it is also true that cold weather affects each of us differently (and even differently than it might otherwise have pre-cc). I get cold so much faster – even in my house (which is nearly 100 years old and drafty in places) and I take a really long time to warm up. With my biliary drain tubes, I can’t rely on my favorite hot soaking bath to warm up either. So, even if he’s not outside a lot, the cold can definitely play a big role in how he’s feeling. My husband gets upset with me when I say it’s too cold for me to walk with him and the dog lots of nights, but it’s the truth.
Does he have biliary drains? Mine are an apparent constant source of infection. Since October, I’ve had 4 tube changes, always preceded by fever spikes and sometimes nausea. I’ve had a few of those ‘your teeth are chattering because you are so cold even though you are under tons of blankets’ moments. Once, my husband was running the hair dryer up and frown my body while I was under the covers. It’s a wonder he didn’t catch it on fire it got so overheated.
Bottom line, while I can’t speak to the med you specifically asked about, there could be other reasons for constant infections. Has your oncologist considered working with an infectious disease guy? I now have a multi-disciplinary team, which includes an infectious disease guy, plus a nephrologist because I got so dehydrated I sent my kidneys into a tailspin.
Sorry to say, it’s a constant battle with these nagging ‘smaller’ issues that takes such time and energy.
Wishing you both success in getting to root of issue.
Lisa
Well, I have not been taken to a witness protection program or anything, but I’ve been pretty quiet here since early February. I’ve spent more days in-patient at Baylor hospital this month than I’ve been home. I’ve written about my ‘misadventures’ more on my caringbridge page if anyone wants to be entertained.
Suffice to say, I have a love/hate relationship with my biliary drain tubes. Can’t live with them and can’t live without ’em. It’s been an interesting month. I am hoping to get cut loose today and go home. If I can remember how to get there.
Lisa
