Doctor wants new portacath installed; has anyone had Taxotere successfully without a port?

ksteacher
ksteacher Member Posts: 5
in Breast Cancer #1

Hi. Happy Thanksgiving! I just found out that my breast cancer has returned in the lung. The doctors aren't able to do a biopsy of the nodule because it is in the middle of the lung tissue, and my oncologist was worried about a lung surgery delaying the start of chemotherapy. Anyway, I started chemotherapy on Friday (Taxotere infusion and Xeloda pills). For the primary breast cancer, I had TAC and had a portacath installed on the right side of my chest. I had no trouble with the lumpectomy surgery or the installation of the port, but as time passed, the port felt irritated -- by seatbelts, bra straps, and everything else, it seemed. It is possible I just had a mental issue with it, as it was a tangible representation of the cancer and definitely had a cyborg quality. After I finished chemo and radiation, I was ready to have that thing removed, and finally, the doctor agreed after six months. I had a lot of scarring, and it itched like the dickens. 

When I first met with the doctor (who is great, in my opinion), he said there would be no need for a port this time. Unfortunately, the nurse disagreed. She is worried that the Taxotere might spill onto my skin and cause burning. I know it may be a mental thing, but I just don't want another portacath. I guess it feels like I am giving in to being a lifelong cancer patient (which I guess I am anyway), and I have heard that once a portacath has been installed on the chest, the surgeon needs to install a new one on the other side. I fully believe that once this new one is installed, no one will ever allow me to have it removed.

I am worried about how much time I have left with my little girl, who is 13, and my most wonderful husband, and it just seems like it would be terrible to live the rest of my life, which seems short right now, with something stuck in my body that I don't want to have there. I have very visible veins (not attractive, but that's the way I'm made).

Has anyone had Taxotere successfully without a port? Has anyone had a problem with burning? I don't really know who to talk to about this and would appreciate any information.

k

Comments

  • TraciInLA
    TraciInLA Member Posts: 1,994 Member
    #2
    I'm so sorry you're having to

    I'm so sorry you're having to deal with cancer yet again -- it seems like there should be a law that once is enough for anybody, shouldn't there?

    I had 4 rounds of Taxotere and Cytoxan in 2009, without a port.  My doctor said he didn't think I needed a port for 2 reasons: 1) I have excellent veins, and 2) I was only doing 4 rounds.  If I had been doing more than 4, I think we would have seriously considered it.

    Neither my doctor nor any of my chemo nurses ever mentioned Taxotere "spilling," and nothing like that happened to me.  Then again, in your situation, I might take the nurse's recommendation more seriously even than your doctor's, because of course she's the one who administers chemo to patients up close and personal, day in and day out.

    Don't know if that helps?

    Traci

  • carkris
    carkris Member Posts: 4,553 Member
    #3
    TraciInLA said:

    I'm so sorry you're having to

    I'm so sorry you're having to deal with cancer yet again -- it seems like there should be a law that once is enough for anybody, shouldn't there?

    I had 4 rounds of Taxotere and Cytoxan in 2009, without a port.  My doctor said he didn't think I needed a port for 2 reasons: 1) I have excellent veins, and 2) I was only doing 4 rounds.  If I had been doing more than 4, I think we would have seriously considered it.

    Neither my doctor nor any of my chemo nurses ever mentioned Taxotere "spilling," and nothing like that happened to me.  Then again, in your situation, I might take the nurse's recommendation more seriously even than your doctor's, because of course she's the one who administers chemo to patients up close and personal, day in and day out.

    Don't know if that helps?

    Traci

    I believe the nurse is

    I believe the nurse is talking about it infiltrating if the IV does not stay in the vein irritationg or damaging the skin the taxotere leaks into. I had 12 taxol and 2 ac without a port. it got tough at the end. If you are going to have long term therapy it might be better to get the port for blood draws too.

  • Bella Luna
    Bella Luna Member Posts: 1,578 Member
    #4
    My Two Cents

    K... so sorry to hear the cancer came back.  I have a 13 year old daugther and understand your concern. 

    A Sister Pink made a good point, if you are going to have chemo on a long term basis, get a port.  I had one and used it for a year with Herceptin.  It worked like a charm and never gave me problems. 

    I read your posting and understand your experience with ports was not so positive.  But if you should decide on getting another one,  mark your skin with a pen or marker to show where the bra strap falls.  Having that visual guideline will help the surgeon know where to install the new port.  My surgeon was a breast cancer survivor and she took that bit of info to heart and placed mine away from my bra strap.

    Oh, one more thing, I had six cycles of Taxotere.  I didn't experience a burning sensation, but they did slow down the flow of the infusion because I had a slight allergic reaction to the drug.  Once they tweaked the flow,  I was fine.

    I wish you much Strength and Peace as you move forward with your treatment.

    Keep us posted on your progress-Hugs.

    Ines

     

  • cinnamonsmile
    cinnamonsmile Member Posts: 1,187 Member
    #5
    You don't mention if you had

    You don't mention if you had any sentinel or axillary lymph nodes removed with your lumpectomy. It is recommended that if you had sentinel or axially lymph nodes removed,  you CAN NOT use that limb for IV's, blood pressures, or blood draws. If someone had bilateral sentinel or axillary nodes removed, then NEITHER limb can have needle pokes or blood pressures.

    It is always better to prevent lymphedema than end up managing. Then you are just adding more cost, more doctor and therapy appts, the damage to tissues because of swelling, wearing compression sleeves/gloves that are very costly.

     

  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
    #6
    If I knew back when I first

    If I knew back when I first got chemo what I know now, I would get a port.   I didn't have a port when I first had chemo (26 years afo) and my veins were very damaged from the chemo.    And, back then, I did not even have taxotere, which can be more damaging to veins.  Every infusion damges your veins a little.  Different folks will have different amounts of scarring and recovery. Now, I get stuck a lot because it is so hard to access a healthy vein.  In my case, only one arm can be accessed because I had nodes removed on left.

    Also, if your nurse wants you to have a port, listen carefully.  How many stcks will you have to endure if your veins are bad (mine started healthy but are shot now).   If your catheter becomes dislodged from the vein during infusion, the taxotere will infuse into your tissues and can cause extensive damage.  There are ways to minimize this: call your nurse immediately if you have swelling, burning, redness or pain at the site of infusion.  Sometimes, pain can be normal as some drugs hurt when infused, but talk with your nurse and really protect your veins if you go this route. 

    Good luck with whatever you decide and your feelings about the port are very normal.  I have one now and I am small on top, so the darn thing really pokes out to remind me.  But I am also soooo grateful for it!!!

  • ksteacher
    ksteacher Member Posts: 5
    #7
    TraciInLA said:

    I'm so sorry you're having to

    I'm so sorry you're having to deal with cancer yet again -- it seems like there should be a law that once is enough for anybody, shouldn't there?

    I had 4 rounds of Taxotere and Cytoxan in 2009, without a port.  My doctor said he didn't think I needed a port for 2 reasons: 1) I have excellent veins, and 2) I was only doing 4 rounds.  If I had been doing more than 4, I think we would have seriously considered it.

    Neither my doctor nor any of my chemo nurses ever mentioned Taxotere "spilling," and nothing like that happened to me.  Then again, in your situation, I might take the nurse's recommendation more seriously even than your doctor's, because of course she's the one who administers chemo to patients up close and personal, day in and day out.

    Don't know if that helps?

    Traci

    Thanks for answering on Thanksgiving!

    Traci: I couldn't reply yesterday (yes, emotional reasons), but your message helped me get through the day. Thank you. It bolsters me to know about your experience, and I really appreciate your advice to trust the nurse. We don't know how many treatments I'll have to have, and truth be told, I might end up with a different medication. I'll make the appointment with the surgeon to plan the port insertion. Thank you, and bless you for being here. k

  • ksteacher
    ksteacher Member Posts: 5
    #8
    Bella Luna said:

    My Two Cents

    K... so sorry to hear the cancer came back.  I have a 13 year old daugther and understand your concern. 

    A Sister Pink made a good point, if you are going to have chemo on a long term basis, get a port.  I had one and used it for a year with Herceptin.  It worked like a charm and never gave me problems. 

    I read your posting and understand your experience with ports was not so positive.  But if you should decide on getting another one,  mark your skin with a pen or marker to show where the bra strap falls.  Having that visual guideline will help the surgeon know where to install the new port.  My surgeon was a breast cancer survivor and she took that bit of info to heart and placed mine away from my bra strap.

    Oh, one more thing, I had six cycles of Taxotere.  I didn't experience a burning sensation, but they did slow down the flow of the infusion because I had a slight allergic reaction to the drug.  Once they tweaked the flow,  I was fine.

    I wish you much Strength and Peace as you move forward with your treatment.

    Keep us posted on your progress-Hugs.

    Ines

     

    Thank you

    Thank you, Ines. for taking the time to write. It helps to know about marking the chest to keep the new port away from the bra strap. I don't know where the doctor will want to put it in, as I can't have it on the left side, and the right side is scarred up. Thank you so much! Your words of kindess and compassion help a lot. k

  • ksteacher
    ksteacher Member Posts: 5
    #9
    cinnamonsmile said:

    You don't mention if you had

    You don't mention if you had any sentinel or axillary lymph nodes removed with your lumpectomy. It is recommended that if you had sentinel or axially lymph nodes removed,  you CAN NOT use that limb for IV's, blood pressures, or blood draws. If someone had bilateral sentinel or axillary nodes removed, then NEITHER limb can have needle pokes or blood pressures.

    It is always better to prevent lymphedema than end up managing. Then you are just adding more cost, more doctor and therapy appts, the damage to tissues because of swelling, wearing compression sleeves/gloves that are very costly.

     

    Yes, you are right

    Yes, cinnamonsmile, you are right on. Of course, it can't be installed on the left (lymph nodes removed). I don't know where it will end up being, but thank you for the reminder. Bless you for taking the time to respond!

  • ksteacher
    ksteacher Member Posts: 5
    #10
    CypressCynthia said:

    If I knew back when I first

    If I knew back when I first got chemo what I know now, I would get a port.   I didn't have a port when I first had chemo (26 years afo) and my veins were very damaged from the chemo.    And, back then, I did not even have taxotere, which can be more damaging to veins.  Every infusion damges your veins a little.  Different folks will have different amounts of scarring and recovery. Now, I get stuck a lot because it is so hard to access a healthy vein.  In my case, only one arm can be accessed because I had nodes removed on left.

    Also, if your nurse wants you to have a port, listen carefully.  How many stcks will you have to endure if your veins are bad (mine started healthy but are shot now).   If your catheter becomes dislodged from the vein during infusion, the taxotere will infuse into your tissues and can cause extensive damage.  There are ways to minimize this: call your nurse immediately if you have swelling, burning, redness or pain at the site of infusion.  Sometimes, pain can be normal as some drugs hurt when infused, but talk with your nurse and really protect your veins if you go this route. 

    Good luck with whatever you decide and your feelings about the port are very normal.  I have one now and I am small on top, so the darn thing really pokes out to remind me.  But I am also soooo grateful for it!!!

    Excellent advice

    Cynthia: Thank you so much for taking the time to respond to my question. Your perspective really helps. I guess since I had no problems with the first round of chemo (maybe since I had a port!) I didn't really appreciate how much damage could be caused to the veins. Thank you so much for your from-the-heart advice. I'm going to call the surgeon now. k

  • Rague
    Rague Member Posts: 3,653 Member
    #11
    Other sites

    There are other sites than just the chest where port can be placed.  Talk to your surgeon as to where might be the best for you.  

    My port has been in since Aug '09.  My choice with my Drs approval.  I'm IBC so 'stats' (if you believe in them) are not great for making the 'majik 5 yrs' and still being NED - so to me - keeping my port in for when/i Tf it was needed made sense to me (and my family).    I've never had any issues with anything bothering my port.  BUT we are each unique in how we are built and the expertise of our surgeons.

    I never gave a second thought to rather or not I'd get a port.  I have great veins and was determined to keep them as after surgery there would only be one arm useable.  (According to the Tech who does most of my draws, I have better veins than most men. LOL)

    Just my thoughts - I will do everything that I can to live every minute I can have to the utmost - there are no guarantees for tomorrow.  We are each so unique in everything that makes us who we are so there is no one correct way to live.  Do what is right for you and yours.  Prayers and Thoughts.

    Winyan - The Power Within

    Susan

  • SAvent
    SAvent Member Posts: 62
    #12
    to port or not to port

    this is definately a decision you have to make with a medical professional that is familiar with your personal physical situation. I did 24 cycles of ACT treatments with no port but beside the huge lump in my breast I was young, in excellent health and had always had really good veins. The port was offered to me stating that it would be "easier" but I felt like it was just another procedure and risk for me to be worried about on top of everything I was already going through so I said no. Instead we rotated needle locations each visit.. right arm.. left arm.. right wrist/hand.. left wrist/hand.. that way no area got too worn out and I drank alot of water and stuff like that. I made it through with no port but I was told that if my veins showed signs of damage or anything else I would have to get it.

    Good Luck

  • Loriell
    Loriell Member Posts: 13
    #13
    No port

    Im starting chemo in two weeks and the Dr said a port is not necessary  since I'm having only four treatments and my veins look good. Hope it will Abe successful . I'll find out in two weeks I suppose. 

  • SAvent
    SAvent Member Posts: 62
    #14
    Loriell said:

    No port

    Im starting chemo in two weeks and the Dr said a port is not necessary  since I'm having only four treatments and my veins look good. Hope it will Abe successful . I'll find out in two weeks I suppose. 

    best wishes

    GOOD LUCK AND GOD BLESS. HOPE ITS QUICK AND EASY FOR YOU.

  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
    #15
    ksteacher said:

    Excellent advice

    Cynthia: Thank you so much for taking the time to respond to my question. Your perspective really helps. I guess since I had no problems with the first round of chemo (maybe since I had a port!) I didn't really appreciate how much damage could be caused to the veins. Thank you so much for your from-the-heart advice. I'm going to call the surgeon now. k

    PS Protect your port

    If you do get a port, protect it.  I don't let anyone access it other than chemo nurses, and, in a rare emergent situation, the ER and hospital nurses. 

    A port has to be accessed using strict sterile technique: mask, gloves, etc.  It is not an IV site-the line goes in right near your heart.

    The chemo nurses are all great about sterile technique.  Lab techs are not allowed to access a port (should be RN), so don't let them.  When I had a high fever and was admitted to the hospital for febrile neutropenia (low white blood cell count with fever),the ER nurse did not use a mask.  I was so sick and it happened so fast that he got away with it.  That was definitely NOT strict sterile technique.  Luckily, I was put on antibiotics anyway.

    So, to avoid having my port improperly accessed, I still get stuck some, but the few veins I have seem to handle the smaller needles that are used to inject a dye for a scan, etc. 

    I love my port and don't want it infected or clotted.

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