ports//how long

hi...i hate my port...its been my enemy since 2007...have not had chemo since 2007...
but my onc. wont take the port out
how about you????????????

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Hi - I HATED my port also! Mine only worked a few times, then it caused an infection. I made them take it out and never let anyone convince me I needed it back. I am on chemo and just go througth the motions now - draw blood for labs and IV for the chemo. So far that has been the best thing for me. I don't mind getting stuck twice a month really (as long as you stay hydrated the nurses tell me... they can find a vein to use.) Just make sure you ask for the "good nurse" each time. lol You'll figure out who is good and who isn't. I have been doing it this way since March '07. The times when I'm not at the hospital for treatment, it feels more like normal since I don't have that thing to look at.

It is YOUR decision, not your oncologist!
Good luck!

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I have always felt that space aliens took me to their mother ship, did experiments, then sent me back with this port in place to evaluate their work. Ok, that's just me finding a way to vent my disgust. I am a person who cannot deal with a tiny scab on my arm. I am required to scratch it off, so how can I deal with a port! I never look at it or touch it, unless by accident, then I am repulsed. I need it. I hate it. The wheels in my head just go round and round. I get you, barbj050.

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how long have u had it in...
i'd like to know how long after chemo
people have kept it in...
i am chemo free 1 1/2 yrs
i could never had done chemo without it though
but now ....take the thing out
my onc wont do it....(:::::::

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I am in a love\hate relationship with my port. I hate it being there, but I must say I love it more! Chemo is very toxic and having a port I do not have to worry about it leaking and destroying my skin.

Also, the medication goes right into the main blood supply entering the heart, so it can be sent quickly and efficiently to all parts of the body - and I don't have to feel any burning or discomfort. I get infused every three weeks for the past year, and I get a quick poke while I watch some people struggle to get IV's for a long time and it sure looks painful.

I also read you can't get certain drugs (navelbine) without a port - I know it is hard on veins.

I met a woman at the clinic a few months back and she's had hers in over 10 years! I will keep mine forever because being stage iv I know more chemo is always around the corner - but that's my choice. You have your own choice and I can't believe your Onc won't let you take it out. What is his\her reasoning?

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in case i need chemo again...then i would have to go under again....and have it put in once more...
most days i forget about it
but when i am awway on vacation or wear something strapless my eye goes right to the SPOT.....
but i get what u men when i had chemo there was no way they were going into my crappy viens...
i was happy about that.....

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I understand your frustration with having the port when it is not being used. I feel like it is a foreign implant but prefer it to using my vein. I say to make a direct request and have the oncologist write the surgical referral with the understanding that you will have to have it put back in if you need chemo again. Patients need to be their own advocates or if it helps get an advocate to go with you on your next appointment for support. I hope you can get the treatment you want.

Melba

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i'm sure he would agree to take it out i just have not pushed for it...somehow i a superstitous and think if i get it taken out the cancer will come back and then i will have to get it put back in...strange????that operation left me with the worst after effects from whatever they used to put me out
i have has double mas/reconstruction and my right upper lung lobe removed never that ill from the operations...the anestisa they used wAS THE WORST.....wow just vented :))))

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My doctor and I had the discussion about taking out my port back in 2006, when I finished treatments the first time. He said he'd rather not, just in case the cancer returns, since I was diagnosed as Stage 3C in the first place with all 18 nodes removed, positive.

Ah, wise man, as the cancer did indeed return and I've been back on chemo since February of this year.

It's easy to remove a port but much harder, from what I've heard, to have it put back in. I figured I'd listen to my doctor and I'm so happy I did.

It wasn't that hard to change my attitude about the port once I learned my doctor didn't want to remove it and the reasons. I love my life more than my vanity and decided to view the darn bump it makes as my badge of courage and simply try to pick clothes that don't show it. But that's the way I view it.

LaGata

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Hi All,

I have had my port since 2002 and I am happy with it.
It has worked most of the time and I have had only one time where it was slow to work. I am constantly being told that my veins are tiny and when they draw blood from my veins the tiny butterfly needle is used.

I will leave it in as long as it works as I have had to have Aredia and for the first part of this year I was on Navelbine.

I do feel that it is each person's choice whether to take it out or leave it in.

Bye,

Aud

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My first port was in my arm, implanted in 2003 before I started chemo. At that time, my surgeon didn't feel there was enough tissue in my chest after my bilateral mastectomy to implant it there. I hated the arm port, I was always banging into stuff with it, and always hitting it the wrong way if I was picking up boxes at work. I had it removed after about a year, the line had moved slightly and was rubbing a nerve in my shoulder.

When I was diagnosed with the bone mets in 2007, and told I would need a port, I asked if I could have the chest port instead. It was terrible at the time when I had it put it; first they tried putting it on the left side, since I had had lymph nodes removed on the right, but there was too much scar tissue so that had to place it on the right. But when I was still having pain on the left side a week later, an xray showed I had a small puncture in the left lung from the attempt to place the port in on that side. I didn't need to be hospitalized for it, but it hurt a lot for about 2 weeks. I hardly had any pain on the right side where the port was actually placed.

I was told that my port, which is a BARD port, can stay in indefinately. Mine is accessed once per month for my blood work, then the following week for my Zometa; but if it wasn't being used, it would have to be flushed every 6 weeks. With the ordeal I went in to get it put in, I sure do not want to have it taken out and have to deal with having another put in, and I'm sure now that my cancer is stage IV, even if the Zometa were stopped for some reason, I'd eventually need for another IV drug.

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Chainsawz mention she had read you couldn't get Navelbine without a port. I am on Navelbine and I don't have a port. My nurse is wonderful... she always starts by giving me a tagment (sp?) before the Navelbine and that is to help coat the vein so it's not so rough on them. I really haven't had many side effects from Navelbine other than fatigue.

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Wow! I can't believe how many people have responded to this issue. I'm writing just to say that I'm one of the people who just love having a port. Before I had it, every trip to the hospital for anything where they had to give chemo, take blood ( or give me a transfusion) was very anxious time. Once, when the nurse tried to put the needle in for the second time (before I had a port), the needle actually bent into a tiny "j". I've had the port a couple years, and there have been a couple times when it didn't want to work. I found a possible aid that the patient can do when it doesn't work. Namely,
to stop talking, close your eyes, try not to think anything, breath deeply, and focus on your breath as it comes in and out. Or do something like Lamaze birthing breathing. For me, this seems to "release" the port and it functions. Maybe it's just coincidence, but this has worked for me a couple of times.

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Lr24 - thanks for posting about the navelbine. It made me panic when I read you had to have a port to get it......what happens if my port stops working?! Thanks for helping ease my mind that I can get it without a port - that article was probably old and they now have figured out other ways. That's why I love this board - I get the real scoop!! lisa

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I also had Navelbine without a port.

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I too, have a "love/hate" for my power port. Love it because I don't have to be wrapped in hot wet towels from finger tips to shoulder to try to get a vein, get stuck a half dozen times trying to catch a vein, and I don't miss the bruising. Also, the power port has never not worked, if it gets a little stubborn, I turn my head to the left and cough, great blood return! The down side for me is not being able to wear tank tops or sundresses, nothing but high necks for me now! The port starts high up on the right side, but toward the front of my neck and you can trace the tube from my neck to the port just above my right breast, and even see the three little bumps on the port it-self, and then it goes over to my heart. Not pretty, but I don't really care, it's convenient and less pain! I hope I never have to have it taken out for any reason, except "totally cured," right!!! One can hope, right!!!

I wish you the best, and think it over carefully before you go yanking it out, you might need it in the future and you'll be happy you still have it in place.

Love and (((hugs))) to you!

hazelmarie

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thanks all...i am just spooked about taking it out..i go through different feelings about it..
care dont care...mostly when i wear
a bathing suit....
so my hate comes and goes...
for now it is still in me
and for now i am ned....till my
next scan...probably sept....

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My port was implanted in May '09.

At first I felt like a space alien had lodged itself in my chest.

It only took a few weeks for me to be comfortable with the port.

I am thankful that ports were invented.

It works great and is not painful.

I'm keeping mine indefinitely. If after surgery and radiation the cancer returns, I will need my port.

My port is my friend---LOL :-)


PAMELA

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I have had my port since 2/05 and have never had problems. It sits on top of my left collarbone it is a small square shape. When I had it put in I had some problems and had to stay in hospital over night because it caused some heart issues. I love my port since I have started cemo again in 2/09 stage 4 now. The nurses say it is the best port they have seen.

I am sorry that you have had some problems. The nurses told me that it really depends on the surgeon that puts the port in.

Good Luck and God Bless

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I wish my doc had told me to keep my port after I finished chemo round 1 (diagnosed stage IIb)..Had it removed when they did the implant exchange and within 5 months of that time, found mets, had to have another port put in.UGH...put it in my rt forearm this time. It was a pediatric port, LOVED it, you really could not even see it...Had a freak thing happen that had never happened to any of my other docs patients ...Lifted my 30 lb daughter & it pulled the cath out of my chest and down into my arm...Had to have it removed that evening. Power Port put in a few days later...LOVE my POWER PORT....Will never take it out...Use it for all scans, treatments, labs etc. And you can see it some and it stays kinda bruised looking, but if you look you can find swim suits, sun dresses/halters etc that have fabric that covers in just the right area...Just have to look a little closer..Hope this helps....Good luck!

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my only problem with the port was when it was inserted ...after the op i was sick from the anestisticia..my port has never bothered me physically just mentally
when i have pet/cat scan they dont use my port
have they used yours???
i dont think they use ports for that???

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