Update, Radiation to start and Port question

Sunrae
Sunrae Member Posts: 808
edited March 2014 in Breast Cancer #1
I'm still wiped out from my chemo, its been 3 weeks since I finished but I still have a bacterial infection, and am on my third round of antiobiotics. I was put on a drug called Levaquin last week and it just about did me in, the side effects were horrible, I couldn't rest or sleep, heard voices, couldn't eat, cost me over $200 for 7 pills. Hope you never have to take it. Was changed to another prescription over the weekend and found some relief. I was tattoed yesterday for my radiation treatments which will start next week. Now been told I will have to have 35 treatments because of so much lymph node involvement and tumor was close to my chest wall.
My big question right now is about my port. I've decided to keep it for awhile and my onc told me it only needs flushing every 3 months. I have the purple power port and the pamphlet said it needs to be flushed every 28 days. I called the company that made the port and was told its up to my onc and chemo dept. but recommended at least flushing every 45 days. I have already argued this point once so I'm hoping some of you can give me some feedback as to how often your port is flushed. Please let me know about this if you can. Thanks.

Comments

  • missrenee
    missrenee Member Posts: 2,136 Member
    Hi Sunrae--so sorry you're having to endure all this.
    I had 33 rad treatments--had 10 out of 23 lymph nodes positive and my tumor was up against my chest wall as well. I had IMRT radiation (not sure what this is an acronym for) but apparently it better targets deeper tumors and pinpoints them easier, allowing less radiation to the whole breast itself. I guess it is newer and more expensive, so there was a bit of a fight with insurance, but they came through and approved it. I had a port (but not the purple power port) and I got mine flushed approximately every 6 weeks or so at my onc.'s office.

    After your research, I'd call the oncologist and just tell them that you want the port flushed more often--just ask them to humor you--you have enough to worry about without worrying about that port. I'd feel the same way you do--after all, it won't do any harm to have it flushed more often than they want to and you'll feel better about it.

    Good luck.

    Many hugs, Renee
  • jamiegww
    jamiegww Member Posts: 384
    missrenee said:

    Hi Sunrae--so sorry you're having to endure all this.
    I had 33 rad treatments--had 10 out of 23 lymph nodes positive and my tumor was up against my chest wall as well. I had IMRT radiation (not sure what this is an acronym for) but apparently it better targets deeper tumors and pinpoints them easier, allowing less radiation to the whole breast itself. I guess it is newer and more expensive, so there was a bit of a fight with insurance, but they came through and approved it. I had a port (but not the purple power port) and I got mine flushed approximately every 6 weeks or so at my onc.'s office.

    After your research, I'd call the oncologist and just tell them that you want the port flushed more often--just ask them to humor you--you have enough to worry about without worrying about that port. I'd feel the same way you do--after all, it won't do any harm to have it flushed more often than they want to and you'll feel better about it.

    Good luck.

    Many hugs, Renee

    Just a suggestion............but
    I would ask a chemo nurse what they recommend. I think they know more about it than the oncologist.
  • Jean 0609
    Jean 0609 Member Posts: 2,462
    Sorry you aren't feeling well.
    Hope things turn around for you. Sending prayers your way. Hugs, Jean
  • Angie2U
    Angie2U Member Posts: 2,991
    Jean 0609 said:

    Sorry you aren't feeling well.
    Hope things turn around for you. Sending prayers your way. Hugs, Jean

    I didn't take chemo, so, I
    I didn't take chemo, so, I don't know about the port. I do want to wish you good luck with rads. Get lots of rest if you can. And, use your cremes from day one, if your rads oncologist oks it.

    Good luck,

    Angie
  • Skeezie
    Skeezie Member Posts: 586 Member
    Angie2U said:

    I didn't take chemo, so, I
    I didn't take chemo, so, I don't know about the port. I do want to wish you good luck with rads. Get lots of rest if you can. And, use your cremes from day one, if your rads oncologist oks it.

    Good luck,

    Angie

    Hope your feeling better soon!
    The directions for my port say to flush every 4 to 6 weeks. My onc has me come every 4 weeks, does not want me to go longer. You have been thru so much that you don't need any more problems...you might want to be very foreceful with your onc...I've never heard of 3 mo. What does your surgeon say?

    Good luck and keep us posted on the outcome.

    Hugs, Judy :-)

    P.S. I am keeping my port for as long as I can and my surgeon said he sees no reason I can keep it for years and years. I don't have a power port, wish I did.
  • cahjah75
    cahjah75 Member Posts: 2,631
    Hi Sunrae
    I'm so sorry you've had an infection. I have heard of Levaquin. I was on antibiotics for 3 months last summer-fall with Lyme disease. I have a Purple Power Port and you're right the directions say to flush monthly when not in use. I would ask an onco nurse if they could flush it at least every 6 weeks if not more often. {{hugs}}
    Char
  • jo jo
    jo jo Member Posts: 1,175
    Hi Sunrae
    I was also put on

    Hi Sunrae
    I was also put on Levaquin a couple of times when i had an effection at my incision site, but i didnt have a problem with it but were all different....im just glad they switched you to something else with those side effects...wow!
    I have kept my port also after chemo and my doc is very strict about flushing it every 3-4 weeks. My port was clogged twice by 4 weeks so now its every 3 weeks. Im with the others here that 3 months doesnt sound right...thats a good idea to ask the infusion nurses and just tell your doc your more comfortable doing it more often...whats he going to say...no!
    I hope you start feeling better soon!
  • New Flower
    New Flower Member Posts: 4,294
    jo jo said:

    Hi Sunrae
    I was also put on

    Hi Sunrae
    I was also put on Levaquin a couple of times when i had an effection at my incision site, but i didnt have a problem with it but were all different....im just glad they switched you to something else with those side effects...wow!
    I have kept my port also after chemo and my doc is very strict about flushing it every 3-4 weeks. My port was clogged twice by 4 weeks so now its every 3 weeks. Im with the others here that 3 months doesnt sound right...thats a good idea to ask the infusion nurses and just tell your doc your more comfortable doing it more often...whats he going to say...no!
    I hope you start feeling better soon!

    Sunrae I am sorry
    that you are having a very difficult time and hope you will feel better soon. I was told by Chemo nurses that port should be flashed every 4 week or 1 months. I did it and kept my port through radiation and first biomarker test for total 7 months without any problems. During radiation and after it I used my port for blood work. I usually flashed it at the time of blood test, just tell them that you need to flash your port.
    Please take care of your arm since radiation could affect lymphedema.
    Good luck with radiation wishing you easy time and quick recovery from infection.
    Hugs,
    New Flower
  • Pinkpower
    Pinkpower Member Posts: 437

    Sunrae I am sorry
    that you are having a very difficult time and hope you will feel better soon. I was told by Chemo nurses that port should be flashed every 4 week or 1 months. I did it and kept my port through radiation and first biomarker test for total 7 months without any problems. During radiation and after it I used my port for blood work. I usually flashed it at the time of blood test, just tell them that you need to flash your port.
    Please take care of your arm since radiation could affect lymphedema.
    Good luck with radiation wishing you easy time and quick recovery from infection.
    Hugs,
    New Flower

    I agree with everyone, I
    I agree with everyone, I have a port also, but I think mine is call a medi port. Anyways, totally ask the onc to humor you and have it flushed more often, I mean you do pay for the service,right? But even if it was free, we are the ones who have been fight for our life.

    Lupe