Port problem and question

[Maggie]

I had my every 3 week herceptin 9 days ago. Been getting it since Nobember.
I have a double port and one has always worked better than the other, so they usually use the best one.
This time, the nurse accessed the one that doesn't work as well for blood drawls. She had some trouble getting it so for treatment, she accessed the other port but she left the needle in the other one with heparin till my infusion was done.
The next day I noticed what seemed like a wire to me, sticking out under my skin and running from my port up to my incision. It felt zig zaggy, too. Perhaps it wasn't but I was upset!!!!
I ended up going over to the hospital to the treatment room and the same nurse saw me and said this was not uncommon at all and she sees this all the time.
Is anyone here familiar with this or had this with their port? I would appreciate any input. Thanks!

Maggie

[CPA]

My wife has had troubles with her port clotting. It sounds like you have the same type of port.

Her doc wants both sides accessed every three weeks. One side for herceptin admin and the other side just to flush. This has (so far) solved the clotting problems. It seems that going six weeks is just too long.

She is also taking 1 mg coumaden (this is a really small dose).

Are you sure that the wire is not the tube running from the port to your vein?

Sorry I can't help with the other issues. Good Luck.

[Marlys]

Maggie,
I believe that what you are feeling is the catheter that goes from the port to the vein it is accessing. Mine shows up especially when I am lying flat. Also mine has actually developed a loop that shows up on x-ray. The radiologist wanted to know if I manipulated the catheterto get it to loop. Mine is not a double port but they all have catheters. I am a retired operating room nurse so I do have some knowledge about this. I get my last infusion next Tuesday and then the port is coming out!
Love & hugs,
Marlys

[tousled1]

I do not have a double port but did experience a problem with my port. After about 2 months I developed blood clots which they contributed to the port. I was put on coumidin and everything is okay now. They did not remove the port. Went off the coumidin a week before my surgery. Had a doppler done yesterday and there is no sign of clots, so no I do not have to go back on the coumidin. I asked my oncologist for the doppler just so that I could have peace of mind.

[Chelee]

Maggie, as a couple others already said here I think your talking about the tubing that runs under your skin. I do not have a double port...but I have my port in my UPPER ARM right above the bend of my arm. (In fact...right where they would put a blood pressure cuff.)

After mine was placed I did not notice for a couple weeks but there is this hard tubing that runs across the top of my arm from the port and continues up and around towards my underarm pit & into my chest from what I understand. I can see it and feel it. It fact since its been there over 4 months...I have a permanet red line on my arm where the tubing under the skin runs so CLOSE to the surface of the skin. There is one spot with mine that HURTS because its where my arm RUBS against the side of my body when I move my arm. Its really red and sticks out. In fact I am been worried about it coming through my skin. So I can understand why you were upset. I know I was when I first discovered mine. I had NO clue what it was under there...no one told me. It took a while for me to feel it and see it. Then I marched into my doctor to ask what that was.

Maybe this is NOT the same as yours...but it kind of sounds like it. And I have heard they CAN move under the skin...sometimes they have to go in and fix them. I hope thats all it is and everything is ok with you. All this stuff can be so over whelming.

Hang in there.

Chelee

[Maggie]

CPA, Marlys, Kate and Chelee,

Thank you all so very much for your replies! With your help, I now realise it is the catheter that runs from the port to the vein. I had a feeling that it could be that, but I honestly didn't know. In 7 months of infusions I'd never felt or seen anything there at all.

Maggie