I've got a brand new shiny power port....

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VivianGB
VivianGB Member Posts: 46
edited March 2014 in Colorectal Cancer #1
well, I'm imagining it's shiny anyway, but I do know it's working great. I've been AWOL around here, I come by to read, but am mostly quiet, sorry! I really suck at being supportive. I may need to vent and rant a little in the future, hope you all don't mind, I'm really not a complainer by nature, but this just really sucks. I started chemo again for the 3rd time today and it's indefinitely this time, if you know what I mean.

I am happy though that my power port that was put in last Wednesday worked like a charm today, my old one that was taken out a year and a half ago was a pain in the butt. It always took an hour and a half to get a blood return so we could start chemo, then I got blood clots from it and had to have it removed before my last 2 treatments and I found out 1st hand why you should get one, it hurts like heck in the arm! This new power port seems to be a lot smaller that the last one too, I can hardly see it, so I guess that's a plus although I don't have many scope neck tops any more lol.

They have me doing FOLFIRI plus Avastin and they gave me a shot of Aloxi that the nurse said will work for 5 days!??? Is that for real? Also gave me a couple of scripts for nausea which my chemo brain can't remember right now, but it wasn't for Zofran or Emend which scares me. I took Zofran before and it worked, so treading new waters and it's a little scary, I hate to puke(don't we all)!

I'm just rambling now, probably those steroids and lack of sleep last night so am gonna go. Thanks for giving me a place to rant a little. It's been a long day and hoping with a little sleep tonight things won't look so bad in the morning.

Everybody hang in there!

Vivian

Comments

  • chicoturner
    chicoturner Member Posts: 282
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    Vivian, Well contrats on the
    Vivian, Well contrats on the new POWER port!! You know, don't worry about how long you are on chemo. I figure as long as I am on it I am not finished! I'm doing clinical trials and look forward to getting a new drug chance! You can live with with and it sounds like to me you are doing great!!! Hang in there friend and don't worry about writing in, just check in so we know how you are!! Best to you, Jean
  • AnneCan
    AnneCan Member Posts: 3,673 Member
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    Happy for you
    Vivian,

    I am happy for you that you are liking the new port. That can make a huge difference. Good luck with the new drugs.
  • Kerry S
    Kerry S Member Posts: 606 Member
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    photo of power port
    Vivian,
    If you go to my expressions page there is a photo of my power port. I kept mine and keep it on my desk. It did a great job for me.

    Kerry
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
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    Port
    Glad that you are dealing well with your new port. Had the Power Port and it worked great everytime it was used. My chemo nurses loved it when they hooked me up because they said the Power Port was the best one so far. Only can comment on port but hope you are doing better.

    Kim
  • CherylHutch
    CherylHutch Member Posts: 1,375
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    Come back out and play!
    Hey Vivian,

    Now don't you go back under your shell... you come out and play with us! Sounds like you've been through a lot, so just talking about it can help out a lot of folk :)

    I go in on Jan 20th to get my second port put in. So this power port you are talking about... is that what it's called? And what's the difference between a power port and a regular port? You say this new one is smaller than the last one and that you can hardly see it... oooooh, I'm hoping they can do that for me as well. The last one wasn't grossly noticeable, but it was to me in that there was a definite "lump" where it was under the surgical scar. I would love to have it not noticeable and constantly reminding me it's there. As it is, my onc did say that this time we will probably just leave it in, in case we need it a third time.

    Now... what is this shot of Aloxi you talk about? When you say it is suppose to last for 5 days... what does it do? The reason I ask... I haven't heard of Aloxi so I'm wondering if I should be asking my onc if I should be getting it... and if not, why not

    Cheryl
  • luvmum
    luvmum Member Posts: 457 Member
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    Emend and Zofran
    Hi Vivian,

    My mum had Aloxi to go with her Xelox plus Avastin in mid-Nov. The onc didn't prescribe Emend and Zofran for her as he thought Aloxi was good enough. In the end, she started vomitting seriously the 2nd day after Chemo. I had to rush to the onc's clinic to get her some Emend and bought some Zofran myself.

    This time (on 3 Jan), she had FOLFOX plus Avastin, the onc immediately gave her Emend, plus Aloxi to go with the chemo. We had some Zofran to take home as well. Today is already the 3rd day, she is still ok, except with mouth sore.

    My pharmacist friend told me, don't wait till you want to vomit and take the pill, take it before you have nausea feeling.

    Take good care!
    Dora
  • luvmum
    luvmum Member Posts: 457 Member
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    New Port
    Hi Vivian,

    I have one more question: what is the brand of your new port?

    My mum is going to install one next week before her next treatment. I want to make sure she gets the right one.

    Thanks a lot!
    Dora
  • plh4gail
    plh4gail Member Posts: 1,238 Member
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    yay
    Hi Vivian, we all know how great it feels to have a good working port :)! I'm happy for you.

    Love, hugs and smiles, Gail
  • VivianGB
    VivianGB Member Posts: 46
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    Vivian, Well contrats on the
    Vivian, Well contrats on the new POWER port!! You know, don't worry about how long you are on chemo. I figure as long as I am on it I am not finished! I'm doing clinical trials and look forward to getting a new drug chance! You can live with with and it sounds like to me you are doing great!!! Hang in there friend and don't worry about writing in, just check in so we know how you are!! Best to you, Jean

    Thanks Jean
    Oh Jean, you've helped to put things into perspective. I'd be willing to do trials too, almost did one this time, but the oncologist though I do better with what I got, so will see how that goes. I've already sign up to donate any leftover bodily tissue and fluids from my blood draws and surgeries for research, I hope it helps in some way.

    Cancer is just not fair! We are taught that if we work hard, fight for want we want in life we can accomplish our dreams. Well it works for some in this case, but seems like the majority or us get the rug pulled out from under us, cancer has a sick sense of humor. I was a caregiver for my mother when she had breast cancer that metastasized to her brain, she spent the last year of her like paralyzed from the waist down and lost touch with reality the last few months. I was a caregiver to my dad who had inoperable lung cancer that metastasized to his throat and just a week before he died we could actually see the big freeking tumor that probably suffocated him to death. All of those terrible memories have given me fuel to fight with all I've got, but a reprieve for me is not looking good. And as you can probably tell I'm scared as hell of the future.

    Okay, I've blubbered enough! Coming here does help! Thanks!

    Vivian
  • VivianGB
    VivianGB Member Posts: 46
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    AnneCan said:

    Happy for you
    Vivian,

    I am happy for you that you are liking the new port. That can make a huge difference. Good luck with the new drugs.

    Thanks Anne!
    I'll take all the luck I can get. On the way home from chemo I kept thinking we ought to stop and buy a ticket for the Mega Ball Lotto which was up to something like 350 million?! After a long day and not feeling very lucky decided to same my money. But it would have felt good to win all that and just give it away. I'd start with family, set my kids up, pay off a few bills and then pick a few of my fav cancer charities and then I can't forget the dogs, not my own, the homeless ones. I'm just dreaming, but if I were a Millionaire at this point in my life that's what I'd do. I'll have to check to see if there was a winner last night, maybe I'll get a second chance : )

    Vivian
  • VivianGB
    VivianGB Member Posts: 46
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    Kerry S said:

    photo of power port
    Vivian,
    If you go to my expressions page there is a photo of my power port. I kept mine and keep it on my desk. It did a great job for me.

    Kerry

    It Is Shiny!!!!
    Thanks Kerry, I'll bet that's just like mine, all the literature they gave me is purple, was yours a double lumen too? I should have saved my first one, but it was good ridden to bad rubbish!

    Thanks Kerry for pointing it out to me, I snuck a peek at your other pictures too, what a good looking family, you've got to be proud!

    Vivian
  • VivianGB
    VivianGB Member Posts: 46
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    Port
    Glad that you are dealing well with your new port. Had the Power Port and it worked great everytime it was used. My chemo nurses loved it when they hooked me up because they said the Power Port was the best one so far. Only can comment on port but hope you are doing better.

    Kim

    Hi Kim, Yes, I think I have
    Hi Kim, Yes, I think I have a good one this time. My last one, no kidding I think was a salesmen's sample and it turned out to be a lemon. I was in preop and the surgeon came in and said well where's the port? The nurses had a "Duh" moment, someone forgot to order it! I laid in preop for 2, 3 hours while they called around to other hospitals looking for one and finally they got the sales rep (who lived about 15 mins away) on the phone and she brought one in that she had. They said it wasn't a salesmen's sample, but I don't believe it.

    So for my new port I had it installed at the hospital where I've been treated, it's 1/2 hour away so was trying to cut back on the traveling with the 1st one and had it put in at our local honky tonky hospital, never again! LOL

    Thanks for the well wishes Kim!

    Vivian
  • VivianGB
    VivianGB Member Posts: 46
    Options

    Come back out and play!
    Hey Vivian,

    Now don't you go back under your shell... you come out and play with us! Sounds like you've been through a lot, so just talking about it can help out a lot of folk :)

    I go in on Jan 20th to get my second port put in. So this power port you are talking about... is that what it's called? And what's the difference between a power port and a regular port? You say this new one is smaller than the last one and that you can hardly see it... oooooh, I'm hoping they can do that for me as well. The last one wasn't grossly noticeable, but it was to me in that there was a definite "lump" where it was under the surgical scar. I would love to have it not noticeable and constantly reminding me it's there. As it is, my onc did say that this time we will probably just leave it in, in case we need it a third time.

    Now... what is this shot of Aloxi you talk about? When you say it is suppose to last for 5 days... what does it do? The reason I ask... I haven't heard of Aloxi so I'm wondering if I should be asking my onc if I should be getting it... and if not, why not

    Cheryl

    Hi Cheryl,
    Good luck with your port placement on the 20th! Hope it goes well. I pulled out the literature that gave me on the Power Port and it says they are made by Bard Access Systems Inc.
    They have a website: www.bardaccess.com or www.portadvantage.com. This is sorta funny, things are so commercialized, you get a cute little discharge packet with a rubber armband, key ring fob, a card to carry around in your wallet (now that's a good thing) and some quickie check lists and info. All that aside I think it works great and it's pretty darn small. My old one was a low profile port, but it wasn't as small as this one. So if your oncologist is agreeable to a Power Port, I'd say go for it!

    Sorry if I wasn't clear on the Aloxi, it's for nausea. I didn't get it before so wasn't sure how well it works. They told me I couldn't do Zolfran too because they are in the same "family". They also gave me scripts for Lorazapan (works for nausea and anxiety) and commpazine. So far I've only taken the Lorazapan and the Aloxi is doing okay. So you might ask about the Aloxi, if it fizzles out and I get sick I'll let you know!

    Good Luck Cheryl!!

    Vivian
  • VivianGB
    VivianGB Member Posts: 46
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    luvmum said:

    New Port
    Hi Vivian,

    I have one more question: what is the brand of your new port?

    My mum is going to install one next week before her next treatment. I want to make sure she gets the right one.

    Thanks a lot!
    Dora

    Hi Dora
    Sorry to hear your mom has to go through this too! She's luck to have you to help.

    In case you didn't see my reply to Cheryl above here's what I know, the Power Ports are made by Bard Access Systems Inc. They have a website: www.bardaccess.com or www.portadvantage.com. Hopefully they are available in you area, it seems to be a good one!

    Viv
  • VivianGB
    VivianGB Member Posts: 46
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    luvmum said:

    Emend and Zofran
    Hi Vivian,

    My mum had Aloxi to go with her Xelox plus Avastin in mid-Nov. The onc didn't prescribe Emend and Zofran for her as he thought Aloxi was good enough. In the end, she started vomitting seriously the 2nd day after Chemo. I had to rush to the onc's clinic to get her some Emend and bought some Zofran myself.

    This time (on 3 Jan), she had FOLFOX plus Avastin, the onc immediately gave her Emend, plus Aloxi to go with the chemo. We had some Zofran to take home as well. Today is already the 3rd day, she is still ok, except with mouth sore.

    My pharmacist friend told me, don't wait till you want to vomit and take the pill, take it before you have nausea feeling.

    Take good care!
    Dora

    Nausea Meds
    Thanks Dora to telling me about you mom's experience on the Aloxi. I'll be watching for any signs it's not working and get something else if I need it. Zofran worked for me a couple of years ago when I did chemo before, so I was a little confused why I wasn't getting it again, but you assume the doctor knows best, but I don't think that is always true. We know what's best for our bodies, like I know I'm a puker! LOL

    Best wishes to your mum! And you take care!

    Vivian
  • VivianGB
    VivianGB Member Posts: 46
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    plh4gail said:

    yay
    Hi Vivian, we all know how great it feels to have a good working port :)! I'm happy for you.

    Love, hugs and smiles, Gail

    LOL
    Especially after having the port from hell before! :) Thanks for sending the love, hugs and smiles, I needed that : )

    Viv
  • luvmum
    luvmum Member Posts: 457 Member
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    VivianGB said:

    Hi Dora
    Sorry to hear your mom has to go through this too! She's luck to have you to help.

    In case you didn't see my reply to Cheryl above here's what I know, the Power Ports are made by Bard Access Systems Inc. They have a website: www.bardaccess.com or www.portadvantage.com. Hopefully they are available in you area, it seems to be a good one!

    Viv

    Thank you
    Hi Viv,
    Thank you so much for your information. The port does look handy and nice. I will talk to the doctor who will implant the port for my mum about this type.
    Hope you'll recover soon too!
    Dora