port pain still

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Kathleen808
Kathleen808 Member Posts: 2,342 Member
edited March 2014 in Colorectal Cancer #1
Hi,
As you know **** got his port put in 2/19. It is a double port and they did not do a good job of putting it in pain free. The twilight drug did not work and they stuck him 5 times but he still felt it. Anyway, that was fine but he is still feeling pain. He says it is a little bit burning at the bottom of the port. The nurse practitioner pushed around it and then it hurt more. **** says it feels like internal irritation. He just wants to know if this is how it will feel the whole time? Is this normal? Do you feel your port?
Thanks.
Kathleen
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  • CherylHutch
    CherylHutch Member Posts: 1,375 Member
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    Port Pain
    Kathleen... my port, itself, didn't cause me pain after the first week. Eventually, it seemed to rub on something and caused my shoulder and arm to ache, likewise when it was first put in my arm seemed to react to it. But for the whole time during the chemo treatments (I had the port in for 12 months), there was no pain.

    I'm thinking **** is just coming up to two weeks since he had his put in.. I would have thought 7-10 days should have done the trick but everyone is different. Now that you are back home in Hawaii, do you have an oncologist and/or surgeon you can report to and ask them to check it out? It may be that he just needs a few more days, then again, it may be sitting weird and pinching a nerve or something.

    Best to have someone look at it and confirm that all is ok and that it's not twisted or sitting on a nerve.

    Cheryl
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
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    Port Pain
    Kathleen... my port, itself, didn't cause me pain after the first week. Eventually, it seemed to rub on something and caused my shoulder and arm to ache, likewise when it was first put in my arm seemed to react to it. But for the whole time during the chemo treatments (I had the port in for 12 months), there was no pain.

    I'm thinking **** is just coming up to two weeks since he had his put in.. I would have thought 7-10 days should have done the trick but everyone is different. Now that you are back home in Hawaii, do you have an oncologist and/or surgeon you can report to and ask them to check it out? It may be that he just needs a few more days, then again, it may be sitting weird and pinching a nerve or something.

    Best to have someone look at it and confirm that all is ok and that it's not twisted or sitting on a nerve.

    Cheryl

    thanks
    Cheryl,
    Thank you for always being so thoughtful and answering our questions. I agree that it is best to have it looked at before starting chemo.
    Have a wonderful day.
    Aloha,
    Kathleen
  • pamalama
    pamalama Member Posts: 27
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    thanks
    Cheryl,
    Thank you for always being so thoughtful and answering our questions. I agree that it is best to have it looked at before starting chemo.
    Have a wonderful day.
    Aloha,
    Kathleen

    port
    Kathleen,
    Hi. Jerry's was sore for about 3 to 4 weeks following insertion.There's no pain there now but since he's had the port placed on his right side he's a lefty it has exasperated an old bike racing injury(MAY08) to his shoulder. He went last week to see a physical therapist someone who specialises in sports and chemo/surgery patients and she said because of resection and port placement he has lost some core strength and the shoulder is becoming frozen. She gave Jerry exercises for shoulder and told him to try to do some core work. It has been very frustrating for him. Definately let the surgeon know about how it feels why the double port? Jerry has a bard single access port it works well to receive fluids and chemo but is tempramental when they access it to get blood for labs some of the nurses are good at getting the blood others are not --making him shift in the chair, cough it unnerves him I told him just let them take the blood from his arm. Make sure **** uses the numbing cream before infusion, Jerry had a particularly jabby nurse last week(forgot to apply cream) and when she accessed the port did so with a forceful jab. Jerry's has erbitux tomorrow we're still waiting for the toxic hepatitis test some of the liver enzymes are coming down, he's very worried about the liver, I will be so glad when this is over. Best of luck to you both.
    Pam
  • PamPam2
    PamPam2 Member Posts: 370 Member
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    Port
    Hi guys
    I was lucky to be clear out for insertion, though getting it out 3 years later was a b****! Mine always did stay a bit sensitive, and was always sore after getting stuck, everyone is different. It was the best choice for chemo, my veins are bad and hard to hit and blow, so I was very glad to have the port. I can not imagine how bad it would have been to try and get chemo 72 hours at a time through my arms or hands. Hopefully your port will calm down as it heals, it took mine quite a while. I was very bruised after it was put in and they waited 4 weeks before starting chemo through it.
    Pam
  • Shayenne
    Shayenne Member Posts: 2,342
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    pamalama said:

    port
    Kathleen,
    Hi. Jerry's was sore for about 3 to 4 weeks following insertion.There's no pain there now but since he's had the port placed on his right side he's a lefty it has exasperated an old bike racing injury(MAY08) to his shoulder. He went last week to see a physical therapist someone who specialises in sports and chemo/surgery patients and she said because of resection and port placement he has lost some core strength and the shoulder is becoming frozen. She gave Jerry exercises for shoulder and told him to try to do some core work. It has been very frustrating for him. Definately let the surgeon know about how it feels why the double port? Jerry has a bard single access port it works well to receive fluids and chemo but is tempramental when they access it to get blood for labs some of the nurses are good at getting the blood others are not --making him shift in the chair, cough it unnerves him I told him just let them take the blood from his arm. Make sure **** uses the numbing cream before infusion, Jerry had a particularly jabby nurse last week(forgot to apply cream) and when she accessed the port did so with a forceful jab. Jerry's has erbitux tomorrow we're still waiting for the toxic hepatitis test some of the liver enzymes are coming down, he's very worried about the liver, I will be so glad when this is over. Best of luck to you both.
    Pam

    I have a double line as well....
    My port was put in very well, I felt no pain after a few weeks, just a big swollen looking bump there, that has since gone down abit, but, it's been over a month now, and I barely know it's there, I don't think **** should be feeling any kind of pain from it now, I sure didn't, I was able to sleep fine, even without pain meds, I think he should get it looked at again by the surgeon, I'd be worried if mine was still hurting after a couple weeks, and I agree with the cream, I always put it on an hour before I have to get my port accessed, just glop it on real thick, and cover it with saran wrap, and then when they go to access it, I don't even feel the stick. I hope he feels better soon!
  • kmygil
    kmygil Member Posts: 876 Member
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    Port pains
    Hi. It seems like all ports do different things to different people. Mine felt like a stabbing inside my chest for about a month; not consistent, but depending on how I moved. Also, sometimes I felt a pressure over to the right where it wasn't even located. But I didn't experience real pain--mainly discomfort for a little bit. Also, I had to position myself in a certain way for it to work during chemo. It worked fine with the pump, but during the drips the first day, I had to raise my left arm to get stuff moving, and not put any pressure on the left side at all during those 5 hours. BUT! I'm still very, very glad I got it, because I did not want to blow out my veins. They may be able to reposition for you; try another surgeon, if possible.

    Hugs and prayers,
    Kirsten
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
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    good info
    HI,
    Thanks you for the good info. It does make sense that it will be different for everyone. We will use the cream before the first stick. Thanks.
    Take care.
    Kathleen
  • jel1940
    jel1940 Member Posts: 29
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    good info
    HI,
    Thanks you for the good info. It does make sense that it will be different for everyone. We will use the cream before the first stick. Thanks.
    Take care.
    Kathleen

    Port
    I just had my third port "installed". I now have a high power port for advanced CT scans and such. I had sensitivity once in a while but it quickly dissipated. I put a heating pad on it sometimes and it seemed to work...also increases the blood flow in case it tends to be sluggish. It sure does beat digging for oil every time they need blood or have to do an IV!

    Hugs, Jude
  • PhillieG
    PhillieG Member Posts: 4,866 Member
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    Port Pain
    I had my port put in 5 years ago and I seem to remember that it hurt for a while, months but the pain would subside over time. I also had trouble with getting blood return from it. They finally did a flow test a few months ago just to certify that it is in correctly an functioning correctly. In the hospital they often took blood from veins since the return wasn't always happening with the port. I had a double put in too, I gues they were having a sale on them at the time.
    I hope you feel better soon, like everything, it takes time and we are all different
    -phil
  • PhillieG said:

    Port Pain
    I had my port put in 5 years ago and I seem to remember that it hurt for a while, months but the pain would subside over time. I also had trouble with getting blood return from it. They finally did a flow test a few months ago just to certify that it is in correctly an functioning correctly. In the hospital they often took blood from veins since the return wasn't always happening with the port. I had a double put in too, I gues they were having a sale on them at the time.
    I hope you feel better soon, like everything, it takes time and we are all different
    -phil

    This comment has been removed by the Moderator
  • lisa42
    lisa42 Member Posts: 3,625 Member
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    sensitivity
    Kathleen,

    I had a terrible time when my port was first put in. No infection, thank goodness, but I felt like I had been hit by a truck (not that I knew what being hit by a truck feels like, but I could imagine!) I had pain in my chest, up my neck on that side, and down my shoulder, back, and arm. This throbbing pain and sensitivity lasted 2-3 weeks. After that point, I couldn't touch the port area or wear a seatbelt over that spot for a couple of months. It probably took a good six months before I felt like I didn't even notice it at all.
    Definitely ask ****'s doctors/nurses to check it out in case there's infection or other problems but, as others have said, everyone is different. I recovered more quickly from my liver surgery than I did from the lousy port "installation". It was done at a different hospital and the "twilight sleep" I was given for it didn't cut it either- I could feel them "slamming" my chest (or that's what it felt like anyhow).
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
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    lisa42 said:

    sensitivity
    Kathleen,

    I had a terrible time when my port was first put in. No infection, thank goodness, but I felt like I had been hit by a truck (not that I knew what being hit by a truck feels like, but I could imagine!) I had pain in my chest, up my neck on that side, and down my shoulder, back, and arm. This throbbing pain and sensitivity lasted 2-3 weeks. After that point, I couldn't touch the port area or wear a seatbelt over that spot for a couple of months. It probably took a good six months before I felt like I didn't even notice it at all.
    Definitely ask ****'s doctors/nurses to check it out in case there's infection or other problems but, as others have said, everyone is different. I recovered more quickly from my liver surgery than I did from the lousy port "installation". It was done at a different hospital and the "twilight sleep" I was given for it didn't cut it either- I could feel them "slamming" my chest (or that's what it felt like anyhow).

    thanks
    Hi,
    Thanks for the info. This is an interesting twist to the port thing. **** started yoga yesterday and said it hurt his port a bit when stretching. However, by evening he said the site felt better than it had since he got it put in. He is now a hit with the ladies in the neighborhood since he will be joining them for yoga a few times a week (depending on how he feels.)

    Nana, thanks for mentioning that your port is really obvious. So is ****'s. I know most people do not walk around shirtless but in Hawaii they do. However, **** is being careful of the sun so he does have a shirt on more often now.
    Lisa, it sounds like you and **** had similar experiences. Too bad they did not get either of your pain situations under control when they put it in.

    Take care.
    Kathleen
  • Shayenne
    Shayenne Member Posts: 2,342
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    thanks
    Hi,
    Thanks for the info. This is an interesting twist to the port thing. **** started yoga yesterday and said it hurt his port a bit when stretching. However, by evening he said the site felt better than it had since he got it put in. He is now a hit with the ladies in the neighborhood since he will be joining them for yoga a few times a week (depending on how he feels.)

    Nana, thanks for mentioning that your port is really obvious. So is ****'s. I know most people do not walk around shirtless but in Hawaii they do. However, **** is being careful of the sun so he does have a shirt on more often now.
    Lisa, it sounds like you and **** had similar experiences. Too bad they did not get either of your pain situations under control when they put it in.

    Take care.
    Kathleen

    My husband....
    ....actually taped a couple yoga sessions off cable for me to do, I think I might try it out, I'm so tired all the time and just tired of having no energy to do anything...maybe this yoga will help!
  • Julie 44
    Julie 44 Member Posts: 476 Member
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    thanks
    Hi,
    Thanks for the info. This is an interesting twist to the port thing. **** started yoga yesterday and said it hurt his port a bit when stretching. However, by evening he said the site felt better than it had since he got it put in. He is now a hit with the ladies in the neighborhood since he will be joining them for yoga a few times a week (depending on how he feels.)

    Nana, thanks for mentioning that your port is really obvious. So is ****'s. I know most people do not walk around shirtless but in Hawaii they do. However, **** is being careful of the sun so he does have a shirt on more often now.
    Lisa, it sounds like you and **** had similar experiences. Too bad they did not get either of your pain situations under control when they put it in.

    Take care.
    Kathleen

    Same problem
    I too had alot of port pain...When they put it in I felt EVERYTHING !!!!!
    They twilighted me but I still felt it all and heard the surgon talking to everyone...The pain is still with me and I find taking Advil helps..My port can also be seen and when I move my neck a certain way you can see the cathader too.Not to nice. I am a bus driver and the kids ask whats that in your neck...fun fun fun being asked that by young kids who don't understand but....Just tell **** to hang in there and just keep thinking it will come out soon...Good luck
  • CherylHutch
    CherylHutch Member Posts: 1,375 Member
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    Julie 44 said:

    Same problem
    I too had alot of port pain...When they put it in I felt EVERYTHING !!!!!
    They twilighted me but I still felt it all and heard the surgon talking to everyone...The pain is still with me and I find taking Advil helps..My port can also be seen and when I move my neck a certain way you can see the cathader too.Not to nice. I am a bus driver and the kids ask whats that in your neck...fun fun fun being asked that by young kids who don't understand but....Just tell **** to hang in there and just keep thinking it will come out soon...Good luck

    Neck
    Yikes, Julie... what IS in your neck? My port was nowhere near my neck and the catheter went from the bottom of the port into an artery or deeper into the chest cavity. I did have a raised area that was almost circular (about the size of a silver doller, above my right boob, but below my collarbone. The chemo nurses never had a problem finding it because it was raised ... and now that it's out, I have a scar and an indentation. But nothing was near my neck! That would be weird... can you feel that??

    Cheryl
  • mom_2_3
    mom_2_3 Member Posts: 953 Member
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    Neck
    Yikes, Julie... what IS in your neck? My port was nowhere near my neck and the catheter went from the bottom of the port into an artery or deeper into the chest cavity. I did have a raised area that was almost circular (about the size of a silver doller, above my right boob, but below my collarbone. The chemo nurses never had a problem finding it because it was raised ... and now that it's out, I have a scar and an indentation. But nothing was near my neck! That would be weird... can you feel that??

    Cheryl

    I can feel mine...
    Cheryl,

    I can feel mine snake up from the actual power port into a vein on my neck. It's not overly noticeable but I can certainly feel it. It's a bit weird but no pain whatsoever.
  • CherylHutch
    CherylHutch Member Posts: 1,375 Member
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    mom_2_3 said:

    I can feel mine...
    Cheryl,

    I can feel mine snake up from the actual power port into a vein on my neck. It's not overly noticeable but I can certainly feel it. It's a bit weird but no pain whatsoever.

    Neck
    WOW... see, I learn something knew every day! Mine didn't go anywhere near my neck. Kind of makes you wonder just how many different ways there are to put in a port :)

    Hugggggs,

    Cheryl
  • Neck
    WOW... see, I learn something knew every day! Mine didn't go anywhere near my neck. Kind of makes you wonder just how many different ways there are to put in a port :)

    Hugggggs,

    Cheryl

    This comment has been removed by the Moderator
  • Shayenne
    Shayenne Member Posts: 2,342
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    unknown said:

    This comment has been removed by the Moderator

    Mine too...
    ...Mine's kind of above the chest/collarbone right side area, with the tube going up my neck as well.. kind of looks like a vein..no tank tops won't be worn by me, you can see the port popped out through my skin, so it's not very pretty!
  • lmliess
    lmliess Member Posts: 329
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    Shayenne said:

    Mine too...
    ...Mine's kind of above the chest/collarbone right side area, with the tube going up my neck as well.. kind of looks like a vein..no tank tops won't be worn by me, you can see the port popped out through my skin, so it's not very pretty!

    Me too
    My port looks like a quarter sticking out of my chest with a line going up to my collar bone. Someone at work wanted to see it and I showed them and they said "oh wow, that's not so bad!" I am not sure what they thought it would be like.