TRIPLE POSITIVE GROUP
Comments
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wasgij96 IF you have good veins I would skip the port if you are having a normal treatment regimen. I have avoided a port so far. Where I get treatments there is one guy who does all the venepuncture and he is a genius. I call him the vampire. LOL. Lately he has been having a hard time deciding which vein to use because my best vein was runined when I was in the hospital with low white blood count and a couple of amatures messed it up trying to draw blood. I haven't asked if that vein will ever recover. I only have 5 more Taxol treatments and then switch to every 3 weeks of Herceptin (which is easier to administer). The idea of a port bothered me. I can't imagine having that thing in me for a year or more.
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I was at first annoyed with the thought of my port and having to have it there for a year, but I'm so glad I did it. In my opinion, it's more comfortable than having to have something in your arm for so long during an infusion and makes it more comfortable to move around, read or get other work done. I've never had a problem with mine; just a quick stick and then I never feel it again. I actually have really good veins in my arms and I'm still glad I have it just so I don't chance collapsing a vein or having any kind of leak and allergic reaction. Good Luck with your decision!
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thks. i have always had problems with the person finding a vein but have only had to "find one " a few times.more worried about a infection then anything.
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I had mine put in the day before my first chemo and despite the fact I hate it I wouldn't be without it...
On my third FEC they couldn't get the port to work properly (turns out my body had created tissue around the end since the 2nd chemo) and to finish my treatment they put a cannula in my wrist - that wrist was still hurting weeks later!
I had the port flushed with a special chemical before the next chemo and it has worked perfectly with no problems since then.
Jenn0 -
I have a port. It acts up sometimes and have to do some acrobatics in blood draw area,
but I wouldn't be without it. I don't like it, didn't like getting it in, but have grown used to it.
Never have infection. I just wash that area with an antibacterial soap.
Just finished Taxol #12 of 12 yesterday (woo hoo) and continuing with Herceptin.
A man in chemo yesterday showed me how bad his veins were getting from chemo and he
said he now wishes he would have gotten port.
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I'm getting my port on Friday. I can't imagine a full year of chemo without it, but I am totally squeamish and hate HATE hate getting stuck. I talked to one of the radiology nurses yesterday and she promised they do everything possible to make me comfortable during the installation procedure, including twilight sleep.
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I have a port. It was inserted about 2 weeks post dx @ the same time I had my sentinel node biopsy. No problems whatsoever with its placement or use so far after 6 TCH and two Herceptin infusions.
Did I tell you lately how I hate rads? The friggin machine BROKE in the middle of my treatment . I had to start all over and it broke again.
They cancelled for the day and I had to finish up the following week. So instead of 34 times..I'm doing 35......and counting..0 -
wasgij96 I have a port. This october will be 2 years with it. (I think I might be able to get it out this October. Need to check). It was installed the day before chemo.
If you get one get a power port. If you need a scan they can inject dye through it. They can also do blood draws though all ports. If you will be doing herceptin for a year I highly recommend it. I know a gal who didn't do Herceptin or a port. They ruined her veins.
I have had no infections. I don't even notice it now. Took several months though.
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Quick question:
Has anyone with Rads had a PET scan after Rads?
Saw my RO last week. He's moving to Washington, yeah for him, but I get to start all over with the new guy...anyway, he said..."Tonya, you don't need a PET, your cancer is gone. If you insist, I will order a CT...but PET scans are not the best testing or even reliable once a person's had rads."
Anyone heard this before?
He's a good doc, so I do believe he believes what he says
But wonder...Anyway, I declined the CT. It is what it is....my exchange is in July, if I ever hear back from the surgeon.
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Tonlee,
I'll ask my RO but she's @ a conference in Spain right now. If i see the fillin Dr before I'll ask.
Question...why are you still seeing your RO? Aren't we done with them a few months post rads?0 -
TonLee - I had a PET scan while in the middle of my rads treatment. Nothing was ever mentioned about PET/rads being an issue.
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I never had any pet scans, all CT scans. I haven't had any scans at all since finishing rads.
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Kayb if I had a power port I would first have to go to the chemo room to get it accessed then go for the scan. When finished I would have to go back to the chemo room to get it removed. I know this because the first time I didn't know it wasn't a power port and had it accessed.
Oddly enough when I got my colonoscopy the nurse wasn't allowed (although knew how) to put an IV in my foot (higher risk of infection). When she found out I had a port she was allowed to do that. Good thing I keep my card with me at all times so folks know what kind of port I have.
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Thanks for the info. sounds like the port is the way to go and if i'm getting one it may as well be a power port.
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Demand a powerport. I assumed I was getting one.
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wasgij96 - My surgeon asked me to draw an area on my chest where the port could be installed that was clear of my bra strap.0
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Hello all, I'm glad I found my triple positive sisters! I had a port put in two days before chemo in Dec 2011 and it was the best decision I could've made in spite of being nervous about it. It is much easier for them to access the port than what I see what the nurses do to those who don't have the port. In hindsight, it was one of the best decisions I've made.
Good luck!
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Hi Beachbum. Welcome!
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Vball...tell them you want a prescription for emla cream and then slather it on 30 minutes before the stick. Dont rub it in. I never even felt the stick when I used it.
Get The port. I was freaked out about it also, and what a lifesaver. I would also get mine accessed so they could use it when I went in for surgeries or tests. I had the powerport also, although I didnt even know there was such a thing. It is just what they used.0 -
Thanks - I'll ask on Friday for the EMLA cream. I absolutely want the port - I am just scared of the procedure itself. I'm such a wimp. I will also ask about the power port. I know they asked "single or double" and my MO said single.
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vballmom after my port surgery they wheeled me into the recovery room. I sat up immediately and dressed. The port surgeon came back to talk to me about post operative care. He seemed a bit surprised to see me dressed and sitting in the chair, not on the gurney. Local anesthesia will make you a little woosy but not too bad. (General sucks for me). I was just tired and hungry after.0
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I never did get a port. I was a procedure wimp as well. Now. almost a year PFC, I wish I would have gotten a port. My veins in my right hand are shot.
Oh, well...hindsight, right?0 -
VBallmom: Hear, hear for the port. I have NO regrets and nice good veins. I never feel anything when they access the port and I don't have any type of numbing cream or spray...just doesn't hurt and I have the power port...nice that they can do all the procedures through the port. Don't be afraid, the procedure is quick and painless.
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I couldn't imagine not having a port. I am just about to finish chemo but continue herceptin. I think my veins would be fried by now. I am fortunate it doesn't really bother me. Mine was placed during my BMX surgery so I just woke up and it was there..
Good luck.. 0 -
I, too, am happy I got my power port. I called it my UBS port until I told one of our IT folks about it and she said it sounded more like a Firewire!
It took some getting used to, but was worth it. The only bad experience I had with it was the one time I had a tech access it rather than an oncology nurse - I'll never do that again! Oncology nurses only; everyone else can find a vein.
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Mine was put in during my mastectomy also. NWArt....I am in a study at Wake Forest. Twice now, they go to draw blood and are unsuccessful. Takes several sticks. Freaks them all out. My oncology nurses had no problem. I told the Wake Forest folks that I was going to tell them that the big outstanding medical center oncology nurses were ineffective and inept. They finally took me to the actual blood lab, where one of the people was able to draw it pulling the blood into a syringe and then inserting it in the vials. The suction thing was apparently blowing the veins, and they were using my hand as it was the only good ones they could find. it probably didn't help that I had been driving for hours right before my appointment.
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Well, I am sitting in a sunbeam at home this afternoon. My oncologist this morning ordered me to stay at home (not go to work) for these last 2 weeks of chemo. My tenacious cold or the Taxol or the herceptin is screwing with me. I'm anaemic, my heart is racing, my diastolic bp value is not good (high) and I'm easily breathless. Not hugely of concern as yet but I am now having a MUGA heart scan on Monday (3 weeks early) which should tell us if we should be concerned.
We really need to hope it's not the herceptin (which you all know can cause heart problems). If my LVEF has been affected after only the equivalent of 3 full doses I am going to feel so doomed.
Jenn0 -
vball - not sure if you realise what that word "single" meant... It meant that your MO doesn't think you'll need the second line for palliative pain control at any point. That was a good word :-)
Jenn0 -
Oh Jenn, I hope all goes well for these last two weeks of chemo. I'm so sorry you are having such troubles. I hope your heart scan is good!!
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Started chemo today taking cyclophosphamide and docetaxel every three weeks for four sessions. Any one else have this and if you did any words of wisdom. Kinda of happy to get the show on the road. Sooner the start, sooner the finish
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