Worried about port?

[Chelee]

I was talked into getting a port in my upper arm when I landed in the hospital a while ago. (Feb. 06)


Its been three months since he put it in. Thankfully, it has worked great. (knock on wood) But...just about the last month or so...its been getting sore where they stick it with that big old needle. Which I can live with that. But now I am getting pain in the BEND of my elbow toward the front...and right below where the port is under the skin also. The really bad pain is in the top, middle part of my shoulder. That really HURTS! Then the tubing they thread through your vein in that arm is getting brusied looking...meaning on the top of my skin. Doesn't look right. Plus pain under the arm pit arm...into chest where the tubing runs from the port. (I think that is how it works?)

So I have finally got my doctor and infusion nurses concerned enough that they decided NOT to use the port this last Monday. (They found a tiny little vein for my herceptin..ouch...that hurt.)

They sent me over for a doppler of my arm. The doppler guy sure took a LONG time. Things did NOT look good to me...but what do I know about reading a doppler screen. lol He went over a few of the areas MORE then once. I found that concerning? He did say as always..he CAN'T tell me anything...but he would give these to the vascular surgery and they would get back to me.

I am thinking regardess of how much it hurts all around my port...above and below it....if he LET me leave that hospital...there couldn't of been anything too bad...right? (Again, knock on wood.)

I realize they had to be looking for a blood clot? And if he found one...I can't see him letting me walk out of there...can any of you?

Is it always normal for the Doppler tech to give these to a Vasular surgeon? Or does that mean he DID see something? Even if it wasn't a clot...what else could be wrong in there to cause ALL this pain? Does anyone have any idea's? Plus, IF there IS ANY kind of a problem...would they want to remove it? I have no other place to put a port that I know of? This is stressing me out.

(One last thing I thought was strange? Since they HAD to use this little tiny vein that day for my herceptin...my pulse was higher then normal?) I even called the nurse over because I was watching TV and noticed my heart was racing more the usually. Kind of worried me.) She checked my pulse and it was at 115...her's was ONLY at 82 & she had been running around...all I was doing was kicking back and watching the tv.

Then that made me think since I did NOT feel that before when using the PORT...that something WAS wrong with the port? Like maybe its leaking some where inside..and the drugs aren't going where their suppose too? Why would it feel that different with a vein verses the port? My pulse didn't speed up when they accessed my port...why now that they used that little baby vein? I hope the drugs that were running through my port all this time have been going where they are suppose too? Sorry for all the questions. :(

Chelee

[Bev]

Sorry Chelee, don't remember where you are in the process. Heart rate could be due to premeds if your'e doing them, benadryl and decadron++. My heart would race but has stopped now that I'm Herceptin only. The other location for a port is on your chest above unaffected breast. The area would sometimes be sore after an infusion, but after so many you get use to it. Unless you have a huge pocket of fluid somewhere you're probably getting your meds. The chest port is probably more convenient but not as pretty as arm. Good Luck, BB

[Chelee]

I can't help but notice since I have been DX with Stage IIIA, Her2 -3+++....my posts are always SO LONG. Its probably why I don't get many replies. Who has the time or patients to read through MY LONG drawn out posts. I want to apologize for the lenght of many of them.


I did NOT use to be that way..but since my DX...I start to ask one simple question..and feel like I have to add all the details. It took me till tonight to realize each one of my posts are far too long. Sorry to each of you. I will really work hard at making them much shorter so you can get through them before bedtime. lol

Chelee

[al from Canada]

Dear Chelee,


Please don't worry about the length of your posts! We have some members, myself included occasionally, who write a whole book or PHD thesis!!

First, your pulse is a red herring related to your concern about the port. Pulse will go up when you are anxious and is probably the best indicator verifying your concerns. I always would go with my gut instincts because 9 times out of 10; they will be correct. If you think the port is malfunctioning, make an appointment with your surgeon asap to get it fixed. Anyone else would only be guessing.

Learn to trust yourself above all others and you'll be on the right track!

Al

[Chelee]

Bev, I don't know why, but I am a emotionally wreck tonight. I appreciate you TRYING to wade through my long post to reply. (I started crying...silly me.) I have just been through to much lately and I can't seem to get any answers from my oncologists, nurses, ect...except from you women. Again, I apologize for the LONG posts...I am TRULY going to do my best to quit doing that. :(

Bev, as to my heart rate speeding up this last time...I only did the herceptin this time. I don't have to take the decadron for that. I did have a little benadryl and pepcid...but thats it. I have'nt heard the results of my doppler on that arm yet...so not sure if its ok yet or not? It looks even more swollen tonight...very painful. :( All I have left as you mentioned would be in upper chests over my unaffected breast. They don't want to do that. So we will see what happens. Thanks again.

Al, Here I go again...got the tears flowing again. Its just been a rough week for me. Every time i think I can handle all this...another problem pops up. This port issue of mine really has me worried. No one tells me anything. I am so tired of pushing andn fighting for everything.

Its music to my ears to hear someone agrees with me. I am so tired of everyone telling me its "nothing", or I am flat out wrong. They all put me off till there is a major problem and I am trying so hard to fight for my life like everyone else here.
But I have finally learned to listen to my gut instinct.

I did have the doppler of the port and that ENTIRE arm Tuesday...no word yet. I will call tomorrow to find out what they have heard as I noticed TODAY it is even more swollen. Something IS wrong with it. No doubt in my mind. Plus my entire SHOULDER tip is killing me and the entire area around my arm. It should NOT hurt this much.

Thanks Al for making me feel a little better about my LONG posts. I know a few others do it too...but they are usually putting down very vauable and useful information to help us all out. Unlike mine which are to explain a problem or question I have. I always feel like I have to put all the details in so they can get the FULL picture. But the problem is...once they see a LONG post...they probably just say to them selves "Oh forget it..I don't have time for that one.". LOL

Thanks a MILLION for your support Al. I will be getting in touch with them tomorrow for the results of my doppler. Plus this is really worrying me to know end. Every Monday is my chemo...so I need to know now what they plan to do. I just pray its not a clot.

Thanks again Bev and Al for your replies and support.

Chelee...

[AlaskaAngel]

Because you had significant legitimate problems with violation of trust to begin with you are an especially anxious patient and that alone could account for the fast pulse at times.

In terms of the port, it sounds like you are having more difficulty with it than most and should continue to check that out with your providers. Can they give you a reason why they don't seem to want to put a port in your chest instead?

But remember that before ports were commonly used, treatment was given IV and that was that. We aren't all built alike and an IV might end up being your only alternative.

AlaskaAngel

[Bev]

Hi Chelee, I think it was the benadryl kicking my butt, although others have more problems with the steroids. I mean I'd have a big body rush a few minutes after they started it. The nurses would set my pre-med drip to super slow after I mentioned it. That helped enough to get thru it. Hang in there and let us know how it goes. Your docs have to change something. Some ports don't work or go bad, and I would consider IV if your veins are good and you're past AC. Good luck, we all feel this way sometimes. Bev

[MCS]

Chelee,

Don't worry about the long write up. You need to let it out somewhere. I understand- have done same myself.

I had a port put in two weeks ago because my one vein on the hand was calling it quits. The interventional oncologyst that did mine said that sometimes the ports in the arm can be a bit more troublesome because of the tube that has to run to the chest ; a longer distance.

But he did add that many of us opt for it because we cannot longer handle too many more things on the chest. He's right.

Maybe there's an infection? any redness? or inflammation.

Yes, like Al says, you need to have it seen. I know what you mean about crying, what next. You go get the port and now it doesn't work.

XO

MCS ( maria)

[Chelee]

Hi AlaskaAngel, They don't want to put a port in my chest because of some rib abnormalities I have. Congenital... I have some under-developed ribs and they are more afraid that they might puncture a lung on me. That's why they were against it.

Since I posted about my port. I called today and the oncologist had me come in...and she said the results of the doppler says NO clots...that its fine. (Relief!)

However...since I was there...I asked why it is getting slightly swollen...kind of a big large puffy place that runs about two inches or more where the tube is under the skin. Its getting bigger every day...plus it HURTS! (And I don't mean the actually port its self....I mean the tubing under the skin is what hurts.) Its black and blue...and I have pain around that entire area. From the TOP of that shoulder down to the bend of my elbow...its killing me! The oncologist looked at it and said "Yes...I DO see it...but if you put your arm down to your side...it doesn't look too bad."


HELLO DOCTOR...WHAT THE HECK does that got to do with anything!!! The week prior to this...it was RED & WARM to touch. So I showed them and requested keflex before it got too infected! It did get rid of the reddess and heat. (That tells me right there something was starting to flare up back then!)


But now that the reddess is gone...its swelling up. But the doppler says its fine....but I know in my GUT...its not. My entire family knows what it looked like from day one...they have all seen how large and swollen its getting. (But I guess no one cares EXCEPT my infusion nurse.) She truly seems concerned. She even went behind my back today to go talk to my doctor. She found out the same thing I did...they don't care. My infusion nurse KNOWS what it USE to look like...and how bad it is now. But I have ran out of things to do. The doppler says its fine...so I am just WRONG and crazy like always. :(

And these people wonder why I don't believe them or trust them. ARGH!!!!!!!!!!!!!!!!!!!!!!!

[AlaskaAngel]

Hi Chelee,

Thanks for the explanation about the chest port. It sounds like your anatomy is limiting your choices to 2, and there isn't a perfect answer either way. We are all built differently and ports in the arm or chest don't work well for some people.

If you want to try to keep the port instead of doing the rest of treatment by IV then is there anything at all you can do to reduce the problems with the arm? Have you had any past medical problems with that arm? Are there any things you might be doing that put any stress on the arm or be irritating the arm? Like any repetitive motion, or things like picking up and carrying weight, or some kind of exercise? Playing a musical instrument? Do you have to frequently pick up and carry a child?

Your other choices would be to request that the rest of your treatment be given IV and hope that your veins won't be a problem, or to discontinue that treatment altogether. The choices are more limited, but the decision is yours.

Hugs,

A.A.