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I'm schedule install port for chemo on Monday and meeting with onc on Tuesday.
So I'm not sure what kind of chemo I'm getting yet.
Anyone had any problem with it? And what kind of chemo tx using through port? I'm sure my onc will tell me on Tuesday, but I want to know more about it before I meet with onc.
Thanks
My wife experienced quite a bit of pain the first few days after her port went in. She had to take Tylenol on a regular basis. Once the surgery site healed, the port has been trouble free.
The most common chemo drugs go through port:
Gemcitabine
Cisplatin
Oxaliplatin
5FU
One notable exception:
Capecitabine (Xeloda)
It's a pill that you take at home.
===============
IMPORTANT:
When port is not being used, it has to be flushed once a month with saline solution. If you ever go on a long break between chemo treatments, remember to arrange the flush.
I love my port. I was getting gem/ox and it burned thru regular i.v. I also had about 10 i.v.s in the hospital. Averaged 1 a day. My veins kept collapsing, etc. Nothing but problems. So I got the port.
It makes everything so much easier. It is a power port so I use it with CT scans, etc. So I only get stuck for blood tests. And if I'm at my one onc's office, they access the port for the blood test, too. It's made my arms and hands so much happier.
I'm lucky, too. My port doesn't really show so I haven't had to hide it. Unless someone knows it's there, no one seems to notice.
You do have to have it flushed. My onc says every 6 weeks. I guess it depends on the brand of the port.
And it will make you more prone to infections. I've had a couple of blood infections since this all started and my onc says it might be because of the port.
But I still think it was worth having it put in. It hurt for a couple of days but more than anything, it is giving my veins a chance to heal.
Kris
I didn't have a port put in, and with the Gem/Cis combo via IV so far have had no issues whatsoever. Some want the port, some don't, and my oncologist said we can start without it and see how you handle the IV. 2 weeks ago, the Gemzar slightly irritated me for about 3-4 minutes, then it went away. I have a big vein on my forearm that they have used 3x (being used right now as I type this) and the regular veins on the top of my arms 2x, the discomfort was the top veins. I think the weightlifting that I do helps 'thicken' my veins as they start to pop out as the weight training works on the muscles. That's my excuse or reason for good veins, I'm sticking with it!!!
I have a power port, and love it! No problems yet. I do use cream to numb it before I go in for my treatments. It really helps, I don't feel anything.
Fighting CC since 10-27-2011
I didn't get my port until half way thru my chemo and I really regret not having gotten it sooner. So much easier and it spares your veins. One nurse told me that she thought that people should all be born with ports!
Just remember to numb it before chemo and you'll be fine.
Best Wishes
-Randi-
I kept forgetting to numb mine before using it. All I ever felt was the initial stick and then a little pressure while the port was accessed. So if you forget, it isn't that bad.
Dad had a PICC for the first 2 months (grrrr) and thursday was his first round of chemo (FOLFIRINOX) with the port. he is so much happier without that infection risk dangling from his arm. he was pretty sore last week, and itchy from all the tape, but he's much, much happier with the port.
LeeAnn,
Are you scheduled for the port placement before the scan? If I remember correctly, it hasn't been confirmed you have recurrence yet? Just an elevated tumor marker?
Best Wishes,
Susie
Hi LeeAnn,
My daughter, Lauren, has a power port. It was really sore when she first got it for quite a while. Now it is ok. It still gets sore sometimes. She has always been really sensitive around her collar bone area so maybe that is why it hurts. She gets Gem/Cis through the port. She always uses numbing cream before it is accessed. She only got hurt the first time it was accessed when the dumb lady in the lab stuck the needle under her port on the side and it hurt like heck. From that time on, she always asks the person accessing her port if they know what they are doing!! I am sure you will do great.
-Pam
Susie, Holding off on chemo for now. After CT I met with my surgeon today.
He said I have liver infection, which I had no idea, could've caused marker to go up and CT was clean. So he suggested antibiotics for 3 weeks and check bloodwork again. My onc agreed to my surgeon....I think my surgeon is in charge of me(hehe). He's very familiar with CC and experienced surgeon so I'm okay with that. I was all worked up about chemo and reading about it for hours, I think I might get some sleep tonight.
Thank you everyone for your inputs and kind words......
LeeAnn
Well, there you go! That sounds like good news to me. Sorry for the infection but probably better than recurrence. That's odd you would have an infection and not be symptomatic. It sounds to me like God has a close eye on you. What a coincidence you got your tumor marker checked.
Take care!
Susie
Good news LeeAnn!! I'm so glad. Let those antibiotics work and get some much needed sleep.
Kris
Got a bad news yesterday. Antibiotics took care of liver infection, but CA19-9 is now in 200's. I'm not sure what's going on. Marker is going up slowly since the surgery but CT shows nothing. I'm going to meet with my onc and radiation onc. today. I guess they're going to talk to me about dreaded chemoradiation.
Dear LeeAnn, try not to jump to conclusions until you hear from those in the know!
Wishing you good news!
Hi LeeAnn,
Try not to think of the worst about todays news from this meeting and please let us know the outcome. We are all here for you.
Hugs,
Gavin
Thanks Lainy and Gavin.
Met with onc and radio onc yesterday. Bascially they don't recomm. doing anything yet, since there's nothing showing up on my CT. My onc wants to consult with my surgeron when he returns from conference. My surgeon mentioned last time poss.biopsy if it doesn't improve.
Here's my CA19-9
1/11- 74
2/12-121
3/12-216
My onc is also trying to get pre auth from insurance to get pet/ct to see if anything shows. We'll see.....
Other than my number I feel gggggreat!!
Yea! and thanks for the update. See, it was a good news day!
Hi LeeAnn,
Thanks for the update. And feeling ggggreat is goooood!!
Hugs,
Gavin
Well, I got a call from my onc last Friday, and said she wants MRI in 2 weeks and go from there... Now that's driving me crazy!!!!!! No plan of action again.
Anyone have any idea what could possibly cause my tumor marker to go up? I have no infection and nothing showed up on CT. What can I ask my onc to do to figure out what's going on? My surgeon thinks that maybe remaining bile duct is shrinking or scar tissue but no cancer. Do I need to seek for second opinion? I just don't like the idea of doing nothing. Any feedback???
Hi LeeAnn, looking back on this page I re read that your ONC said perhaps a biopsy? What I want to know is, if nothing is showing, what would they biopsy? You know how we love 2nd opinions! Listen to your gut! Personally I have never heard of a shrinking bile duct and have never heard of scar tissue causing counts to go up. I could be wrong though just never heard of that. My feeling is, when in doubt get another opinion.
Lainy, since she wants me to have MRI in 2 weeks I'm going to wait. If MRI doesn't show anything and tumor marker still high I'm going to get another opinion for sure. Thanks for your feedback.
Lainy: I have to respond to your last post. When they 'killed' Tom's tumor that was 'blocking' the bile duct, the radiation also apparently destroyed that bile duct so that is why they could not get a stent internalized. Bile ducts can also become 'restricted' or 'narrowed' which would cause the bili level to climb as the bile is not flowing through that restricted bile duct. Many times a tumor can completely block a bile duct which would also cause the bili level to climb.
Scar tissue can also 'block' a bile duct. Scar tissue from a 'dead' tumor, or scar tissue from a surgery. All of these things can result in a person's bili level to climb.
Additionally there are a whole host of other things that can cause the bili levels to climb. Even a tube exchange will call the bili level to rise, or an infection in the liver.
Don't want to step on anyone's toes, but just had to chime in on this one.
Hugs,
Margaret
Thanks, Margaret. I actually knew all of that about the bile duct, Teddy had a couple of problems also with some of those things as well as the ureter which the tumor had bent but I had never heard the term, "shrinking". No toes stepped on.
Hi,
Got not so good news today. I had MRI Tuesday and found .9cm nodule along the right hemidiaphragm posterior to the upper pole of the right kidney which wasn't there before. They are not sure what is it yet, but surgeon is suggesting second look, remove it and more biopsy. My onc wants to wait and get MRI in a month and see if there's any changes before any treatment. I finally asked her if she's comfortable treating me. I don't like to wait and do nothing. She said if I want second opinion she's totally okay with that idea.
So when I got home I called University of Chicago and send them all my records. Said he's going to give it to onc surgeon to review and let me know what they want to do. They have a team of doctors work together, but I only want to see new medical oncologist. I wonder if they going to agree with that..
My blood works were all good except ca19-9 slightly went up since last visit.
3/21-218, 3/27-240, 4/17-283
Any suggestions??
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