Porta cath driving me nutz! Nerve zapping?

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Springtime
Springtime Member Posts: 5,355
edited June 2014 in Managing Side Effects of Breast Cancer and Its Treatment

Cancer center told me that some people have no issue with their portacath; others can't stand them. Mine is driving me crazy. I am wondering if I should have it out after the 4th "AC" chemo, and just suffer IV's and blood draws for the last 4 "Taxol" treatments.

Has anybody else been driven crazy by their Portacath for chemo? What did you do? Just buck it up? Have it out? I would love to hear from some real people!

For me it is like a nerve is getting hit when I move- center of my chest area, near to cath, about half way betwen top of cath and bottom port area. Any slight movement can cause it, and it is worse after infusiton or later in the day. My skin over that area is getting numb. It seems to be getting worse as time goes on. (!!)

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  • Aggie84
    Aggie84 Member Posts: 67
    edited September 2008

    Hi Springtime,

    How long have you had it?  Maybe it will subside.  I hated mine too, and was soooooo ready to get it out.  I had 4 AC, 4 MF's and then  4 Taxols. I think I got it out after all the chemos were done.  If I remember correctly, there was much more stuff going through my port with the Taxol.  The AC was basically a "push"  where they inject the drug into the line, but if I remember right, that a lot of antihistamines and fluids going through the port.  

    Mine felt numb.  The feeling  comes back though.

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  • Mary-Lou
    Mary-Lou Member Posts: 2,230
    edited September 2008
    Mine is still in after 3 years almost. I really need to have it out. It has never given me any trouble.
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  • arc229
    arc229 Member Posts: 88
    edited September 2008

    I had my portacath put in at the end of April and the rubbing of the catheter on the nerves  definitely damaged some nerve bundle in my chest, near the clavicle.  They removed it on the 22nd of Aug and I am still on very heavy duty pain meds which barely control the pain. Why I'm up at 3am typing this. Most people have no trouble but you should jump on it if you do-- no reason you should have extra pain.  If you can handle having the taxol in your vein directly, I'd do it.  I will be having my next bunch of treatments that way until I can face having another port installed.

    best,

    Amy in NYC

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  • Springtime
    Springtime Member Posts: 5,355
    edited September 2008

    I had the portacath placed July 18th, so nearly 6 weeks ago. At first just the incisions hurt, but now, the "nerve" thing is getting worse and worse by the day. Not getting better. I have no sore-ness from the incisions any longer, not my complaint. It's the electrical nerve shootings with the slightest movements of my left arm. Picking up a coffee cup, making the bed, getting dressed, wiping at the toilet!

    I also feel numbness over this area on my skin, to the left center of the cath. I am going to ask how many sticks per my 4 Taxol treatment to expect. My left arm is not a great "draw" arm for blood, but my right is SNB arm so if off limits. I have one more AC Sept 15th - they said I need it in for that.

    I am thinking I do NOT want nerve damage! Amy in NYC, sorry! But thank you for sharing. I may be on the way to nerve damange already! One more thing! ahhhh!  

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  • az8n
    az8n Member Posts: 78
    edited September 2008

    I did not like the port at all.  It gave me SO MUCH physical pain from the day it was installed.

    The day I came back from the hospital, it was a herculean task laying down in bed.  I understood it was something foreign to my body but the pain it gave me was just too much for me.  I felt that it overshadowed the pain I got from the lumpectomy.  I constantly complained about the pain I got from it being under my skin....but I am a whiner so that is nothing new....    :-)

    When I knew my counts were up (after my 4th AC cycle), I had it taken out the first available time the surgeon had.  I even joked that if she was not in her office (which was downstairs from my onc's office, I will knock on her door at home and have her take it out right there).  That was how desperate I was to have it out of me.

    The scar that it left is both itchy and painful.  Something I want to scratch but I cannot as it hurts as well.

    I think there are a few of us who just do not work well with it because if you read more on this boards, there are some ladies who feel that it is something they cannot do without and some who want to keep it.

     I am not well versed on the frequency of Taxol txs after AC but if you can handle those txs without a port and if you and your doctor/nurse can wait, then maybe you can have it taken out.  From how I understood it, your counts need to be up before it can be taken out to avoid infection. 

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  • Springtime
    Springtime Member Posts: 5,355
    edited September 2008

    Ok, sheesh. Counts up too. Mine are okay so far, but just had my third AC on Sept 2. 4th AC on Sept 15th. I am thinking we can make some decisions after seeing counts, and finding out how many sticks the 4 AC's will take each time, but honestly, I am feeling any amount of sticks and bruising would be preferable at this point. 

    Did you have to delay your Taxol treatments because of getting the Portacath out? That would be also something that I will need to consider, I really wanted to "stay on schedule". I have a long road ahead ...

    Thanks Az8n, for the details... and help.  

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  • Springtime
    Springtime Member Posts: 5,355
    edited September 2008

    I just wanted to report back that I went back initially today, on husband's suggestion, to underwire bra that had more support. Felt a little better. (It was suggested by somebody, maybe after SNB? I can't even remember! to wear non-underwire bra...). Anyway, I then had an inspiration to use one of the three sprots bras I got this weekend (on sale, ha) and it seems to really help. This thing is high and tight, and is keeping the portacath more "still".

    Just wanted to mention this is case it could help anyone else. It still nerve zaps, but this is between bras! Maybe I can make it through. 5 more chemo's to go... we'll see...

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  • Sassa
    Sassa Member Posts: 1,588
    edited September 2008

    I also had a lot of problems with my port causing me pain.  I had the port on the left side above the remaining large breast. 

    I believe a lot of the discomfort came from the breast pulling down on the port area.  It helped to wear a bra 24/7 so I purchased sleep bras to wear at night.

    After I had the second breast removed, a lot of the port discomfort did disappear .

    I still have the port (18 months out from the end of chemo, 7 months out from the end of herceptin) because I have such horrble veins to access.  I use the port from blood draws and IVs.

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  • Springtime
    Springtime Member Posts: 5,355
    edited September 2008

    I went to the physical therapists today for appt, upon hearing that bras are helping, they also decided to "tape up" the breast, and this also seems to help. So now I am wearing sports bra with taped up boob during day, and a sleep bra at night (seems okay, don't move too much at night!)

    Just wanted to pass this on.

    Thanks Sassa, for the comments. I think too it is the boob pulling on the cath, or something, that is making my nerve there get zapped. As much stillness as possible seems to help..

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  • carol1949
    carol1949 Member Posts: 562
    edited September 2008

    Mary Lou,  This is kind of off subject.  I noticed your dx and stage and it is the same as mine.  I am pleased to see you are well.  Would you be kind enough to share if you are doing any supplements or medications to remain cancer free?

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  • spar2
    spar2 Member Posts: 6,827
    edited September 2008

    I had mine out after finishing chemo (my veins are really small and roll) but I still have pain where the port was and also lumps (i guess scar tissue)  It has been out since 2005

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  • Springtime
    Springtime Member Posts: 5,355
    edited September 2008

    Update: the kinesio tape (the stuff used at the olympics) that was being used to tape up my port side breast (which did really help the port zapping) caused skin soreness (I think some skin came off in my chest area! in little spots, when tape removed/changed) so back to high tight sports bras and trying not to move much. I think I'll have to use sports bras and tape/no tape.

    At my next transfusion, I am going to have them check out the veins on my non SNB arm side and see what they think. The fact that Spar2 has had hers out since 2005 and still has pain really makes me wonder about keeping this thing if there is another way...  GOLLY!!!

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