Re: University of Chicago Trial FOLFIRINOX.

Merci beaucoup to all. We had the pre-op today for the port which will be installed a week from Monday( the day before Alison's 2nd chemo). So, we have the next week to make the decision between a "regular" port and the power port. The power port sounds really interesting considering the fact that I'm certain more CT's etc will be done down the road. If anyone has an adverse opinion about the power port, or a strong opinion why to stick with the regular one, I certainly appreciate the feedback. Today was day 4 of her first gem/cis chemo. She has done remarkably well, but today she felt poorly... I understand this could be due to the steroids wearing off? Nevertheless, still no nausea, only mild fatigue, but today more so . Thanks to all for the insights and encouragement. Ceci

52 (edited by LadyLinden Fri, 08 Nov 2013 22:54:22)

Re: University of Chicago Trial FOLFIRINOX.

Hi Ceci, Merci beaucoup to you!  I love New Orleans and the people.  I am thinking of going to Mardi Gras! 

I want to let you know I had the power port placed this past Tuesday.  I am allergic to some metals so they had a plastic one in inventory.  The doctor asked me what I was allergic to and he said a port made of titanium may cause a reaction.  So, please discuss with Allison's doctors if she has allergies to metal.  It's been five days since the power port placement and I have a large bruise and swelling. It is the size of a coffee cup plate. It was stitched and glued and the first three days there was a pulling sensation when I moved my upper right body, bent, laid on my right side.  But that is getting better.  The hospital gave me no other options except the power port.  I understand that the port is definitely the way to go to avoid all the probing and picking time after time.  I am happy to hear Alison has tolerated the Gem/Cis!  I am starting the same chemo treatment on Thursday (if the port heals).  A friend of my is a hospice nurse and we are going to visit them tomorrow and she will take a look at it.

You mention that Alison will have the port placed one day before chemo? Truth be told, it's been four days for me and I am so bruised and sore that there is absolutely no way I could accept a needle or anything in that area for chemo.  Perhaps the doctor did not do mine correctly?  You may want to discuss with Alison's doctor as soon as possible. I am not even sure if my first chemo appointment on Thursday is going to happen.

May I ask you one question:  Alison had steroids.Did she have any swelling?

This is a great site!  It's so nice to exchange information with people who have knowledge and experience on what we are going through.  If you get a change, please let me know about the steroids.  Thank you.  Patricia from Michigan

Re: University of Chicago Trial FOLFIRINOX.

Ceci,

If you're being given a choice, I see no reason to argue against a power port, since you will likely have a number of CTs with contrast injection. I have chemo and labs every two weeks, CTs every six weeks, and occasional MRIs, and I haven't been poked for months. In my case it was immediately ready for use. I had no significant soreness in the area.

Best wishes, Mark

Re: University of Chicago Trial FOLFIRINOX.

Hi Mark, I had the power port put in last Tuesday and I have a very large bruise, swelling and a large lump.  I think the lump is the port.  Maybe I should have the doctor check mine out.  You said yours was immediately ready for use.  Yikes, I can't imagine mine being used.  I was extremely sore the first three days but it's a little better this 4th day.  Thanks for the info and perhaps I need to get to the doctor for a check up.

Re: University of Chicago Trial FOLFIRINOX.

Thanks y'all. To Ladylinden, Alison had minimal swelling. I don't remember anyone cautioning about swelling... But now that u mention it, the first day after chemo, she commented that her fingers were so swollen that she couldn't remove her rings. So now I'm understanding from you that this was probably from the steroids. She didn't mention it again, and unfortunately I didn't think to ask. Now re the power port.... The dr said the power port is slightly smaller than a regular port. I was surprised last week when they scheduled her for the implant to happen just before her scheduled chemo ( that's when we opted for the IV). So now this week, they again scheduled her for the implant to happen the day before the scheduled chemo....then the dr explained they leave the needle on the outside (taped down & protected) so that the chemo can be administered from outside the site this first go round. After the chemo is administered, they then remove the exposed needle... The port continues healing and the next time chemo is administered, they use the port in the normal fashion. I'm sorry to hear about the discomfort that's been described. But I guess it's better to be prepared. Thank you all for sharing.

Oh yes, one other question for those of you that took the gin/cis combination. What was your experience with hair loss? The dr at MDAnderson said she may have thinning, but didn't they expect full loss. But the chemo nurse in Baton Rouge said to expect full loss. Just curious about when and what to expect.

Re: University of Chicago Trial FOLFIRINOX.

Hi LadyLinden,

Yep. The bump is there to stay. I'm pretty thin these days, so mine really sticks out. When I get accessed, nurses often ask, "Where's your port?" I just unbotton the top of my shirt, and then there's often a little giggle, as if to say, "Well, never mind, no one could miss that!"

From the parts of the procedure I recall, there's a bit of pushing around to get things positioned the way they want. I could see that causing some initial swelling and bruising in some cases. Anyway, I assume the improvement with yours means all is well, and the area of the procedure is just settling down. 

Mark

Re: University of Chicago Trial FOLFIRINOX.

I didn't lose any hair with Gem/Cis but I only had 3 rounds of it.  Then with Oxa/Xeloda did not lose any hair either.  Also only 2 rounds of it.

Re: University of Chicago Trial FOLFIRINOX.

I would definitely go with the power port especially in light of further contrast needed for CT scans. My husband had a power port and it was so great for chemo and the contrast. His port is out now (he had issues with sepsis NOT related to the port but they needed to take it out anyway) and now the CT scans are pretty rough. The veins get fragile as the chemo goes on so it gets harder to start and they blow out easier. Treatment two weeks ago they had to move his IV line in the middle of treatment due to pain. And then yesterday they started his line sent him for the CT scan and the vein blew when they did the contrast. Made a HUGE lump on his arm and was burning and sore all day. The IV they started for the infusion worked all day but it's hard, hot and sore today....needing to keep hot packs on it all day. He was thinking about the port again but with only five doses we are going to hang in there.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: University of Chicago Trial FOLFIRINOX.

Hi Patricia and Ceci,

My daughter, Lauren got her power port and had chemo all on the same day. She did fine with all of it.  The port was very tender for some time. Make sure to ask for a prescription for numbing cream. You put it on about an hour before having your port accessed and put a lot on and don't rub it in all the way. Cover it with Saran Wrap. It will be numb around the port area and you won't feel the needle going in. There will be a bump and that is the port. You will probably have a scar from where they put it in, but that is your badge of courage!! Lauren started out with Gem/Cis and 5-FU. Her hair got very thin, then mostly fell out. She had really long hair when she was first diagnosed. She then got it cut in a bob and donated her hair. The bob got too thin, so she went to a pixie. After that, it got really bad so she had it cut close to her head, but never shaved all the way down. She had a few wigs, but they were too hot and itchy. She wore them once in a while, but mostly just went with the bald head. I wish you all the best of luck. If you have any more questions, I will be happy to answer if I can.

Love and hugs,
-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: University of Chicago Trial FOLFIRINOX.

I would definitely suggest the power port.  Just don't forget to put the numbing stuff on it.  I forgot once and it is not a good thing to be poked when you aren't numb!!  Didn't do that again. Before I got the port they were poking me 3-4 times to get a good vein.  That was definitely not fun.  One nurse said that people should be born with ports in them!!  I got the message and decided to get one and never regretted it.  Maked scans way easier.

My doctor put the port in my boob so it was more difficult to see. smile  So now I have matching scars...one from my lumpectomy on my left boob and one from the port on my right boob.  I guess my days of bikini modeling are over smile

Best of luck,
-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: University of Chicago Trial FOLFIRINOX.

Ceci - I think it depends on the dose of Gem/Cis in re: to losing/thinning hair.  Ron's dr. told him that his hair would fall out.  The nurses that administered the chemo said that it wasn't a very strong dose so they suspected his hair would only thin out, and that's exactly what happened.  Ron just finished round 3 of Gem/Cis and he still has a lot hair, but it definitely is somewhat thinner. 
I have never heard of power port, so I'll have to see what info I can find on that.  Ron had a port put in about 5 days before his first chemo.  He has a very large bump.  The last few weeks they have not been able to draw blood from his port so they have to go to his veins, which they always have a hard time with.  Does anyone have any suggestions on what to do so they can resume getting blood from his port?  It's very painful when they have to stick him 3 or 4 times to get blood each week.  They can administer the chemo through the port and get a back flush, but no blood.  The infusion lab that Ron goes to now uses a type of numbing solution that they spray from a can.  It is white when they spray it on and then disappears.  I'm not sure what it is.
Best wishes,
Judy

Re: University of Chicago Trial FOLFIRINOX.

Snowbird -
They should be able to declot the line. There is an infusion they use that is similar to the TPA they use to break the clots up with some strokes. I think it's called urokinase (sp?) and it has to be done be an IV nurse but you should be able to talk to the chemo center about where they get them done. A lot of times the catheter that goes into the blood vessel develops what they call a fibrin sheath over it as the body responds to the fact that the catheter is a foreign body. We do it all the time with our home infusion patients. Takes about an hour but it's no big deal really. You may have to have it done outpatient at the hospital by a specially trained nurse but ask.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: University of Chicago Trial FOLFIRINOX.

Thanks, Kris.  We'll definitely check into this!