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    GregP_WN wrote on LeeWalker's wall

    Hello and welcome, we are happy to have you with us. Please feel free to join in the conversations. Here is a link to our cancer dx page for your type of cancer. Take a look at it to get you started on some information. You will notice at the bottom of that page 4 of our active users who have had that journey already, you may wish to contact them for their experience and wisdom. Also, I encourage you to go to the questions page now by clicking on the questions tab at the top of the page and post what is the most pressing issue you have right now. This will introduce you to the community and get you started on the help you need right now.

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  • LeeWalker's Avatar

    LeeWalker asked a questionLeukemia

    Port removal after 6 months of remission

    14 answers
    • kalindria's Avatar
      kalindria

      I was about to have my port removed after 2.5 years when I had a recurrence. Now I think I'll just keep it unless there's a reason to remove it.

      2 months ago
    • still_fighting's Avatar
      still_fighting

      I'm on my 4th port since 2008. It depends on the cancer and if you are on treatments. I have CLL with 17p deletion which is the hard to treat kind. I asked if I could have mine removed and my chemo team said I will have mine forever. So far I've had this one for 2 years. The chemo drugs are so toxic they erode after awhile. I've had them punctured (a freak accident), split, bubble and clog because I waited too long to have it flushed...learned my lesson there! The first 2 didn't hurt at all the 3rd one was very sore because of all the scar buildup but this one didn't hurt at all and I had treatment 3 days later. So it really just depends...good luck and keep fighting!

      2 months ago
    • GailB's Avatar
      GailB

      I have heard that they take them out because of infections and problems, but I have had mine in for 4 yrs. I kept it because my thought was if I keep it I won't need it, if I take it out I will need it basically if I keep it the CLL won't come back if it take it out it will. Crazy I know but that is what it was. I actually have used it a lot and not for treating the CLL but for other illnesses and infections. It is now not working has a sheath over the end, had a study done of it and what they said was because it has a turn at the end that is more than likely why the sheath has developed that they were not able to get it off and over time it has just gotten bigger and thicker until it got to the point that it takes too much pressure to push anything thru it and it is more than the pumps can/will push and they shut off. I am having it replaced with multiple line but that will only be in temporarily. How they put them in makes a difference in if they are temporary or long term. The temporary ones are placed just under the skin and the long term ones are place deeper under the muscle I believe. I have liked having mine because my veins will give blood but they don't not take things very well and they tend blow out. The only reason I agreed to get it was because on the first day it took 7 veins to get the infusions and I had to give in and get it. I spoke to a surgeon that puts them in locally and he said it doesn't make any difference if I have this one taken out and another one immediately put back in or if it is take out and then later on another one put in. MD Anderson does not put them in to leave them, they only put them in temporarily and remove them that is their policy. Since I am entering a Trial at MD Anderson got to follow their policy.

      about 1 month ago
  • LeeWalker's Avatar

    LeeWalker started following

  • LeeWalker's Avatar

    LeeWalker shared an experience

    Decision Point (I have been in remission for 6 months and my Dr. thinks it is a good time to take the port out, or I could wait three more months.): I hear that leaving the port in that sometimes infections can occur and blood clots. My Chemo treatments went very well. I was Stage IV. Should I take the port out which the nurse and Dr. think is best.

    1 Comment
    • mja511's Avatar
      mja511

      I, too, have CLL (with P17 depletion). I decided from the beginning to not get a port, and went through my chemo sessions without one. Besides the risk of infection, I didn't want to be reminded of my situation. My advice to you is to do what you feel comfortable with - control the things that you have control of, such as removing the port - or not. Glad everything went well - and enjoy everyday!!!

      2 months ago
  • LeeWalker's Avatar

    LeeWalker started following

    User: GregP_WN

  • DaveWaz's Avatar

    DaveWaz wrote on LeeWalker's wall

    Welcome to the WhatNext family! The WhatNext family is made up of people like you who are looking for help or looking to help others. To help you along your journey the WhatNext family has put together a Beginner's Guide to Cancer that I highly recommend you check-out here: http://bit.ly/10BQKCi. Also, please do not hesitate to reach out to others or ask for help.

    Wishing you the best.

    David
    Founder, WhatNexter