Port Problem/Switch to Xeloda

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jazzmaster
jazzmaster Member Posts: 7
edited March 2014 in Colorectal Cancer #1
My mother has stage III colon cancer (surgically removed) and began 6 month adjuvant therapy in July - FOLFOX

For whatever reason the oncology team did not realize that at treatment #6 they needed to use a needle 1 1/2 to 2 inches long to access the port. She did not complete all of the therapy and gave her a script to have a port catheter angiogram. Well the next day she went to the local hospital and the radiology department damaged the port in the process. The pain, swelling and the damage to the skin really began to get noticable around the fifth day and she went back to the oncology group. They prescribed a steriod for the swelling, BLISS cream for the skin, and pain medication. She also saw her surgeon and he wanted to follow up within a week.

This week she saw the surgeon and he gave her two bad pieces of news: 1) he was resigning from the healthgroup, may be going to another local hospital but not sure yet and, in the meantime, referred her to another surgeon with 20 years experience. 2) the port would probably need a couple of months to heal and it would not be functional. Therefore, she would have to begin a new protocol with Xeloda.

I am trying to deal with each of these issues so I am asking for some help. How bad will it be that she will have to take the chemo intravenously every two weeks? I have read that the veins become hard with the chemo treatment. Has anyone completed the treatment with Xeloda and what side effects could be expected and what prevention methods has anyone taken?

Before the chemotherapy protocol was started, she had a second opinon at Sloan-Kettering Hospital in NYC, so she has a physician there. I am thinking of letting her know of the situation, the reason for the change in protocol and what she thinks.

I am also so concerned about whether my mother should switch oncology groups and get the therapy through Sloan-Kettering's Valhalla location.

Also, I have reported the incident with the radiology dept to the patient advocate center at the hospital but I would like to take this further.

I apologize for the lengthy message, but wanted to hear from other members who may be able to help in this situation. It is bad enough to have this disease but to have these errors occur on top of it makes it just more stressful.

Comments

  • Shayenne
    Shayenne Member Posts: 2,342
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    Well....
    ....you do mean taking it in the hand instead of the port, right? because if so, I heard it was pretty painful, and it burnt, can't they just replace and give her a new port?? I sure wouldn't want that in my hand.
  • jazzmaster
    jazzmaster Member Posts: 7
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    Shayenne said:

    Well....
    ....you do mean taking it in the hand instead of the port, right? because if so, I heard it was pretty painful, and it burnt, can't they just replace and give her a new port?? I sure wouldn't want that in my hand.

    Chemo Via Vein
    Hi Shayenne:

    Thanks for the response. Unfortunately, the area of the port is very swollen and cannot be touched until it heals.

    Your answer is what I was afraid of. I guess I will have to ask the oncologist and the doctor at Sloan-Kettering for her opinion, as well.
  • Shayenne
    Shayenne Member Posts: 2,342
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    Chemo Via Vein
    Hi Shayenne:

    Thanks for the response. Unfortunately, the area of the port is very swollen and cannot be touched until it heals.

    Your answer is what I was afraid of. I guess I will have to ask the oncologist and the doctor at Sloan-Kettering for her opinion, as well.

    But....
    ... they can do surgery on the other side for the port, I had a port removal because they thought it was infected, when it wasn't, and it was on my right side, they then put me back in surgery where I now have my left side, I would think they could do this for her as well?

    Hugsss!
    ~Donna
  • Kathryn_in_MN
    Kathryn_in_MN Member Posts: 1,252 Member
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    Shayenne said:

    But....
    ... they can do surgery on the other side for the port, I had a port removal because they thought it was infected, when it wasn't, and it was on my right side, they then put me back in surgery where I now have my left side, I would think they could do this for her as well?

    Hugsss!
    ~Donna

    You said she is switching to
    You said she is switching to Xeloda - that is the pill form, so you don't have to worry about IV's.

    Or is she continuing the Oxaliplatin by IV?
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
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    Hang on a minute
    Hi Jazz

    Xeloda is the pill form of 5fu...side effects vary, but you can expect a burning upset stomach at times. More imporantly will be the splitting and cracking of your feet, which makes it difficult to stand or walk for long periods of time.

    The toxicity in Xeloda builds up very quickly depending on your dosage...they usually start you high around 4000 mgs a day over 14 days, so about a month in things can get challenging.

    What to do? Go to drugstore and buy a tin of BAG BALM. It is an udder cream with excellent emollient properties...slather it all over your feet generously and put socks on to hold the moisture in...do it at least 3x a day, morning, evening and before going to bed. It will really help you and if you start early then it may not be as bad as waiting for the symptoms to get worse.

    As far as taking the Oxaliplatin by IV into a Vein - please read this - FORGET THAT!

    Before I got my 2nd port in, we did my first Oxy treatment by vein and before the treatment was over, I was hurting from the needle site all the way up my elbow....and I mean PAIN...the kind of pain where I told my doctor, I'm not going to do chemo again, I'm ready to meet Jesus.

    Once my 2nd port was installed the infusions went much smoother.

    This is just personal experience. Oxy is very caustic and hard on the veins...my onc should have told me all of this and said go get another port and then we'll start, but they just let me go ahead and it was bad. About 90 minutes in it began to hurt real bad at the needle site. Over the next few days, I thought my left hand and arm were ruined for life, but as time went by the sympoms eased up...I learned a valuable lesson as well all do from our mistakes. But that is why I had to respond to you today...I wanted to warn you.

    I should have known there was something up when the nurses asked me, "Which hand do your write with?" I told them my right, and then they put the IV needle into my left hand.

    Don't mean to be harsh, but after suffering that, I don't want anybody else unnecessarily to go through that one.

    And they could put a new port in on the other side and then the other side could just go and heal and could be removed after that.

    I'm fully into my 6th year with my battle with Cancer.

    For reference, you can click on my name and see my history of what I've been through. Just got diagnosed for the 3rd time with Cancer during this time frame and looking at another surgery to take care of a lung met.

    Hope this helps you.
    -Craig
  • grammadebbie
    grammadebbie Member Posts: 464
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    Pick Line
    Sorry that all this is happening. I would contact your 2nd opionion doctor and see what they say. I don't know why they wouldn't just put another Port or PICC line in. I had the PICC line and that is usually in your upper right arm. It worked great for me. Please let us know how things go. Will be praying for you all.

    Debbie (gramma)
  • jazzmaster
    jazzmaster Member Posts: 7
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    Sundanceh said:

    Hang on a minute
    Hi Jazz

    Xeloda is the pill form of 5fu...side effects vary, but you can expect a burning upset stomach at times. More imporantly will be the splitting and cracking of your feet, which makes it difficult to stand or walk for long periods of time.

    The toxicity in Xeloda builds up very quickly depending on your dosage...they usually start you high around 4000 mgs a day over 14 days, so about a month in things can get challenging.

    What to do? Go to drugstore and buy a tin of BAG BALM. It is an udder cream with excellent emollient properties...slather it all over your feet generously and put socks on to hold the moisture in...do it at least 3x a day, morning, evening and before going to bed. It will really help you and if you start early then it may not be as bad as waiting for the symptoms to get worse.

    As far as taking the Oxaliplatin by IV into a Vein - please read this - FORGET THAT!

    Before I got my 2nd port in, we did my first Oxy treatment by vein and before the treatment was over, I was hurting from the needle site all the way up my elbow....and I mean PAIN...the kind of pain where I told my doctor, I'm not going to do chemo again, I'm ready to meet Jesus.

    Once my 2nd port was installed the infusions went much smoother.

    This is just personal experience. Oxy is very caustic and hard on the veins...my onc should have told me all of this and said go get another port and then we'll start, but they just let me go ahead and it was bad. About 90 minutes in it began to hurt real bad at the needle site. Over the next few days, I thought my left hand and arm were ruined for life, but as time went by the sympoms eased up...I learned a valuable lesson as well all do from our mistakes. But that is why I had to respond to you today...I wanted to warn you.

    I should have known there was something up when the nurses asked me, "Which hand do your write with?" I told them my right, and then they put the IV needle into my left hand.

    Don't mean to be harsh, but after suffering that, I don't want anybody else unnecessarily to go through that one.

    And they could put a new port in on the other side and then the other side could just go and heal and could be removed after that.

    I'm fully into my 6th year with my battle with Cancer.

    For reference, you can click on my name and see my history of what I've been through. Just got diagnosed for the 3rd time with Cancer during this time frame and looking at another surgery to take care of a lung met.

    Hope this helps you.
    -Craig

    using Xeloda Only
    Hi Craig;

    Than you for your help on the side effects of XELODA and prevention techniques!

    This discussion board is a life-saver!!! Everyone here to help everyone out!

    I spoke with the oncologist at Sloan-Kettering and she stated that it would be fine for my mother to switch to Xeloda. She has had six (or seven) FOLFOX treatments out of 12 treatments and since she is 82 and it is adjuvant therapy, the oncologist would have taken her off at that point, anyway.

    She did not want to risk placing in another port on the other side and just let the other side heal.

    So, she will not be taking the oxlyplatin any longer, and thank goodness has not had the neuropathy side effects.

    I have to still discuss this with the local oncology office, which will be monitoring her on Xeloda.

    The oncologist stated this is a very expensive form of treatment, but Medicare should cover it.

    How expensive could it be?
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
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    using Xeloda Only
    Hi Craig;

    Than you for your help on the side effects of XELODA and prevention techniques!

    This discussion board is a life-saver!!! Everyone here to help everyone out!

    I spoke with the oncologist at Sloan-Kettering and she stated that it would be fine for my mother to switch to Xeloda. She has had six (or seven) FOLFOX treatments out of 12 treatments and since she is 82 and it is adjuvant therapy, the oncologist would have taken her off at that point, anyway.

    She did not want to risk placing in another port on the other side and just let the other side heal.

    So, she will not be taking the oxlyplatin any longer, and thank goodness has not had the neuropathy side effects.

    I have to still discuss this with the local oncology office, which will be monitoring her on Xeloda.

    The oncologist stated this is a very expensive form of treatment, but Medicare should cover it.

    How expensive could it be?

    Jazz - Very Expensive :(
    Hi Jazz

    Xeloda will cost about $2000 for each prescription.

    And you have to take it once a month so it adds up quickly.

    My insurance portion for me to pay for this was $150 - insurance paid the remainder.

    Not sure what Medicare covers, but this will give you an idea.

    She will be on a 14 day on and 7 day off program, 6-8 pills a day.

    That is a highly toxic program though and we adjusted mine to 7 days on/7days off and I was able to stretch the medicine further, but the issue was TOXICITY not the cost of the med, which did hurt to pay.

    If toxicity gets too bad, ask the onc about the 7 & 7 program I mentioned.

    Let me know if you have any other questions.

    thanks/craig
  • lesvanb
    lesvanb Member Posts: 905
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    using Xeloda Only
    Hi Craig;

    Than you for your help on the side effects of XELODA and prevention techniques!

    This discussion board is a life-saver!!! Everyone here to help everyone out!

    I spoke with the oncologist at Sloan-Kettering and she stated that it would be fine for my mother to switch to Xeloda. She has had six (or seven) FOLFOX treatments out of 12 treatments and since she is 82 and it is adjuvant therapy, the oncologist would have taken her off at that point, anyway.

    She did not want to risk placing in another port on the other side and just let the other side heal.

    So, she will not be taking the oxlyplatin any longer, and thank goodness has not had the neuropathy side effects.

    I have to still discuss this with the local oncology office, which will be monitoring her on Xeloda.

    The oncologist stated this is a very expensive form of treatment, but Medicare should cover it.

    How expensive could it be?

    Xeloda expense
    Firstly I am sorry that you have to deal with these significant bumps in the road with your mom's treatment. It is stressful and doesn't build confidence.

    I took Xeloda as neoadjuvant therapy while I was doing radiation. The pills ran about $1200 for about 2 weeks worth for me (4 pills/day at about $22/pill). My insurance from work paid for it. I'm not familiar with Medicare restrictions.

    Leslie
  • dianetavegia
    dianetavegia Member Posts: 1,942 Member
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    Not a 2" needle???
    Gracious, the needle used to access my port was maybe 1/2 inch long. It was the standard and came in a package for such use. No matter the patients size, we all had the same needle.

    Your mother can have this port removed and another inserted. I'd opt for that before having chemo in my veins. I've read that is VERY painful!

    My port was removed just over 2 weeks ago and the surgeon said I had some scar tissue around it. He asked if the lab tech had ever had trouble accessing it. Nope.

    Just FYI... I was given Phenergan (sp) by IV during a bad tummy virus. I was one of the lucky ones who didn't have my arm amputated. Instead, the meds burned my vein and it took over a year for the hardened cord in my arm to go away! Longer than that for the hard cord/ vein in my hand to be normal again. Phenergan is the anti nausea med many of us/ most of us get during chemo.
  • abmb
    abmb Member Posts: 311
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    folfox and port
    I am so sorry that your mom is going through so much with her chemo. My husband is stageIII colon cancer. Complete removal of colon in April of this past year. He is going through chemo now - folfox in the port. He was going to go on Xeloda but he spoke to a friend who went through this and he told him to do the port. My husband just didn't want to have more surgery. He did have the port placement and his surgeon for the removal of his colon and port (same dr.) was great. You have to feel comfortable with the person who is treating your mom. You are her advocate, her voice. I think you did the right thing and switching drs. I hope all goes well and your mom is on the road to recovery. My husband still has 5 more treatments to go and hopefully all will go well. Take care and God Bless all who are going through treatments.
  • LOUSWIFT
    LOUSWIFT Member Posts: 371 Member
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    take it further
    I've done Xeloda which are pills and Folfox which is IV port delivered. Xeloda for me was terrible. Hand and foot syndrome, stomach cramps, etc. I hope the patient Advocate Center isn't just another hospital funded apology center. "We are so sorry"..."we want you to know they will be working hard to see that these unfortunate circumstances are addresssed" "we take your concern seriously and while we are moving forward ( moving forward is the new phrase especially in politics) please accept our apology for what may have occurred". Form letter BS in hopes of calming you down. Rest assured if there was an error then medical wagons are already circled and getting at the truth will be a forest of paper to frustrate confuse and wear you down. But it can be done! You did the right thing finding other doctors. best of luck Lou