Chemo Port Questions
I am supposed to be getting mine installed in the next few days and want to know:
1. Do people like them?
2. Do they interfere with movement or sleeping?
3. How long after is chemo started?
4. What can go wrong and what do I look for?
Comments
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I have one, I much prefer it to being stabbed repeatedly looking for my tiny, disappearing veins. I don't even remember that I have it, though it took a week or two for the incision to heal. I was told you could use the port as soon as the next day, although it was a couple of weeks before mine was used.
My understanding is that infection is the biggest risk.
Hope this helps.
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Patrice,
To answer your questions..
1. I love having mine, I used it for all my chemo and blood tests and plan on keeping it because I have to take Herceptin for a year...
2. It doesn't interfere at all with sleeping or anything else.
3. Mine was put in on Feb. 14th, I started chemo on Feb.27th .
4. I don't know what can go wrong, because I didn't have any problems with it.
But some woman do have problems.
I do know that when you are not using it on a regular basis it has to be flushed out every four
to six weeks. Thats what I have to do now..
Hope this helps you.
Good luck with it, its better than having your arms pricked for everything.
Angie
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Patrice;
Installment of the port is a simple procedure.
- 1. I love mine, it sure beats them trying to find my poor veins in my arm all the time. When I have gone to the hospital they use it instead of doing an IV in my arm. I was in the hospital for UTI infection. Had to stay in the hospital for a day. Then when I had a blood transfusion. I am glad I have it.
- 2. I do not even notice mine is there. Once I slept wrong and it was sore the next day. other than that it has not bothered me at all.
- 3. For me the chemo started the very next day. Because of the cancer I have I will need to keep mine in for a year and get it flushed once a month.
- 4. The only thing I know of that can go wrong is infection. Other than that I have not heard much about it.
- I wish you the best of luck.
- Blessings
- Elizabeth
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Hi Patrice,
I have had my port for almost 4 mos now. I have used it for 4 cycles of AC chemo and 1 cycle of herceptin that will continue for 1 year. My veins are small and rolling and I have had some difficulties even having my pre-chemo blood draws (usually more than one attempt, often have to have different nurses try; on more than one occasion 3 different locations on the same arm were used). To answer your specific questions:
1. I have a love/hate relationship with my port. As per above, I know it has made/will make treatment so much easier. On the other hand, because I am slim and thin skinned, and had no say in the placement, it is very prominent and visible and I have difficulty finding clothes that hide the port itself. The catheter portion is always visible. Having said that, I know other women whose port is barely visibile at all until pointed out. Also, because my skin is senstive, the skin over the port and catheter often gets irritated by different necklines. It is also a constant reminder of treatment/bc. However, I do not regret having it and would do it again if necessary.
2. At first I experienced a "pulling" sensation when I changed sitting positions or doing certain movements. I was assured this was normal and it did almost completely disappear my third cycle. I am able to sleep in all positions except my stomach (which I haven't done since lumpectomy/re-excision surgeries anyway).
I exercised the whole way through chemo (for a clinical tria) and had no problem stretching, walking, or running with the port in place (I just had to use extra dressings and my tightest sports bra while the incision was healing).
3. I had mine put in a week before chemo started, but I've heard of people having the port inserted the day before chemo.
4. Apart from normal surigcal healing issues, I don't think much can go wrong with them, but hopefully others here can comment on this.
Where I am, port insertions are done almost on an assembly line system; there is no pre-procedure consult until you are literally "on the table." If you have a pre-op consult, ask about the placement options so you can choose something that works best for you medically and functionally.
Good luck with the procedure and with your treatment.
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Love the port
Able to sleep any way once the incision healed. It may be sore initially.
It is very visible, but I don't care if people can see the port. I do wish I had drawn the outline of my bra strap before it was put in. It would have been more comfortable if the strap didn't rub it.
I've had mine for almost a year now. Problems beyond infection: I have had a fibrin sheath develop that blocked the port but they were able to clear it by using large amounts of heparin. It showed up by blocking the intake side of the port but still allowed the infusion to happen. That's really the most common problem for a port and even then it's not too common.
Good luck Pat on the chemo and the surgery
Flash
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I had gotten a blood clot with mine. Please just be vigilant.
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The port procedure was very easy for me. Mine was one that did get infected.....and I had to have two rounds of antibiotics. It is now healed up.......and I had my first treatment today......after having my port since Aug 19th........it went well and I'm truly glad I have it now.......even tho it was such an aggravation for so many weeks!!!
Good luck.......you will do just fine!!!!
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Hey Patrice,
Just make sure to tell the surgeon to put the port away from where your bra strap is. If not it will be a constant source of irritation. I loved the port bc it saved me from the vein poking and prodding. I hated it because I was always aware of it and it would hurt if I accidentally rolled over on it or someone hugged me too hard. I had it removed 3 weeks after my last treatment against the advice of my doctor. I couldn't wait to get it out, out, out!! It did leave an ugly scar, but that's not so hard to deal with.
Good luck!!!
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Don't forget, if you are not having infusions for a period of time, you need to get the port flushed with saline or Heparin. My onc said every six weeks, at the very least least. While you're getting chemo, the nurses will do this at the end of your tx, so you don't have to remember then, but if you are keeping your port afterwards (my onc said to leave it in for a year...some kind of superstition he has), you need to stop in to your treatment center or find someone who can do the flush. It takes all of five minutes.
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Just so you see there is another side... I almost didn't post this. But, anyway, here goes...
I hate it. I can't WAIT until it is out. It bothers me all the time. I've had to wear 2 bras, one regular, one sports, to keep it from "nerve zapping" something! I sleep in a bra. When I sit up in bed, I strap on the SPORTS bra, I don't even stand up! When I shower, I have to hold up that port-side boob to keep it from nerve zapping. IT IS SUCH A PAIN. I can't do yoga! It just plain STINKS.
However, I am half way through chemo and feel the "all bras all the time" is worth it. It is very handy for blood draws and chemo. But as soon as chemo is over, this thing is SO GONE.
At the Dr's practice where I go, apparently, I've been told you either love it, or hate it.
I hope you love it! I had a girlfriend who cried the day she had hers out, and keeps it in her jewlery drawer! I plan to burn mine if effigy, however!
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Hmmm, well Springtime the nerve zapping thing certainly doesnt sound like any fun at all. In a way this might be a Godsend (though I reserve the right to change my mind about that at any time) because it takes the average health care worker 10 tries to get an IV in me and thats the good ones. It's the perverbial rock and a hard place I guess.
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Patrice,
I just had another breast MRI and they tried THREE times on the "non at risk lyphodemia"arm to plant that IV for contrast before I said UNCLE just do the other side and be clean! (I have a really good vein there). For some reason, not all health care workes are trained to use the port, just FYI. I had a test done for "sugar" and they could not use the port! But everything at the cancer center where I go, they use the port (blood draws, chemo, etc).
My "many bras" to deal with nerve zapping is a pain, but I STILL HAVE My PORT so it is worth something, I can tell you! (I will just have a bon fire and burn it when all this is over...)
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I will say this much Patrice.....talk to your surgeon about the placement. It IS very important. I unfortunately ended up with mine almost between my breasts. Kinda layin up on my left breast. Needless to say....at night I fight with it all the time because every time I turn over.....it gets smashed because of it's location.
But after today........and my chemo treatment with it.......it was such a blessing and worth every ounce of trouble it has caused me. Because they can never find my veins either........except in my HANDS.......and I'm getting to where I just look at them and say NOT THE HANDS........lol
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Patrice, I had my port installed on Sept 8th and had my 1st tx Sept 11. It was sore to begin with, but it's been 2.5 weeks and I forget it's there. I guess I have enough padding (even after bi-lat mast) that it's not very noticeable. My surgeon prescribed a low dose of coumadin (blood thinner) that I have to take as long as the port is in.
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The only issue I had is that the port side of my neck was really achy after the insertion for about a day or two. My friend who drove me that day thought the achiness might be due to the fact that the surgeon had my neck turned to the opposite side for the entire procedure and that may have strained a muscle.
My port is low enough that wearing a blouse with the top button undone doesn't show anything at all. I am glad I have the port as I have been having arm vein issues ever since my initial diagnosis. I never had problems with IVs or blood draws before this.
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Patrice:
I would never consider doing chemo without a port. Loved mine...even though I did develop a clot...that part was a drag, but if my cancer ever recurred, I'd get another port put in. It's been 2 years since it was removed and you can barely see the scar.
Take care-
My name is Patrice too!
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Well here are my 2 cents about this little gem, I to have mixed feeling. I have very small veins, so my first chemo treament was easy, however, there isn't a day, no wait a minute that doesn't go by that I don't feel mine. It rubs my collor bone, I feel my pulse and I just got to a point where I can sleep with the damn thing. My surgeon said it will stretch with my treaments, which it has, however, as soon as my treantments are over and they give me the all clear, this annoying peice of whatever will be part of the pavement! I have 3 more to go!YIPPIE!
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I dont get zapped, but understand your pain
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I have no problem with my port at all. Much better in my opinion than getting poked for every treatment and blood draw in between.
The surgery went well with no problems. Almost all of my blouses cover it, and if they didn't you would not notice it unless it was pointed out. It isn't under my bra strap. I can sleep on either side and it doesn't bother at all.
Most of the time I would not even know it was there.
Chris
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Well I will find out for myself on Sept 30th. Thanks everyone for answering.
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It may have to do with the port placement as well. The nurse navigator told me one lady she knew was SO BOTHERED by hers it was taken out and another put it. The first one drove her absolutely crazy, but the second one never bothered her a bit!
I have 4 more treatments to go, and then this this is SO OUT of me...
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I have had my port for almost 2 years (yes, two years!). I was triple negative, grade 3, stage 3, and my doctor feels strongly that I needed to keep it at least that long since triple negative is more aggressive then most bcs and more likely to come back in that time period. So even though I have been done with chemo for almost 18 months, I still have the darn thing and get it flushed every 8 weeks. They also take all blood draws through it. It's a pain, but I decided that I could stand the discomfort since my doctor felt so strongly about it.
It's a "power port" so that contrast solutions for things like CAT scans or MRIs can be put through the port, as well as blood draws and chemo. (Springtime, that may be why they couldn't use your port for your MRI- an ordinary port can not take contrast solutions.) It does require a special needle and I have had to stop some techs who were going to use any old port needle and have them send for the proper one.
In my opinion, it's been a GOD-SEND just for not having the sticks for IV or blood draws. In some ways it's like a security blanket to me, something I know the nurses can easily use (if they get the right needle!).
I don't really notice the port during the day, and I no longer have breasts and don't wear bras anymore, so the strap thing is not a problem. I agree that it would be a good idea to make sure it's not in the way of your strap before the insert. I do have some problems with it at night- I can't sleep on my back or on the side that had the lymph node removal because of discomfort, so I sleep on the port side and I have to use a series of pillows to prop my arm up and cushion the area. Some nights are better then other.
I think the benefits outweigh the discomfort and risks. Hope this helps.
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JanClare,
Mine also IS A POWER PORT!!! I need to ask if they have any techs there at the MRI place that are trained to use it!!! I did have CAT scan people use it at the hospital. THANK YOU for mentioning this!
I'll call ahead next time and push on this....
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Patrice ... I did not notice if anyone suggested using Emla Cream prior to accessing your port for txts. Its a numbing cream, you put it on about an hour before your appt, I've never felt even the slightest poke. Something worth asking your onc about. Hang in there ... Carol
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I agree, the cream you put on an hour before (on the port where they stick you) is excellent. I've forgotten it sometimes, and while not horrible, it is certainly more comfortable with the cream. I think mine is called Lidocane.
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Hi had my port installed 5 weeks ago although they just accessed it last week due to an infection. on the other side, they didn't want it to spread to the port site. Today, I am sick to my stomach, side of my neck hurts and haven't even had chemo yet. My surgeon did't put me on blood thinners and of course I can't get him on the phone to ask if this is normal. I keep clearing my throat also............I just don't know if I can live with this thing in me. Still haven't decided about chemo. They recommend it but I guess I have to decide if the benefits out weigh the risk.
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Flamcake,
I hear of a lady who could not tollerate it, so they took it out and put in another, and she was totally fine. Just a thought. It sounds like you are really going through a rough patch with it. I AM SORRY! I was able to wear mutiple bras and sports bras and keep it high and still, and this seems to help me. I can NEVER go without a bra and can't let that boob side even "relax down" in the shower.
I hope you find a way!
Springtime
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Well the chemo port is in.....if I am understanding this right starting tomorrow I will be getting both the "red devil" chemo AND taxotere Chemo at the same time....has anyone had both together like this? Is this really effective or will this just mean double the side effects?
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Patrice,
I had "red devil" (A) and Cytoxin (C) at the same time. They each seemed to have separate side effects, but I honestly never knew what was which until I would report what was happening and then they would tell me, oh that's from A or that's from C.
I guess they know what ones to "do together" though! Good luck to you on day #1! For me it was the hardest one, not knowing what to expect, but I counted on kindness, and I got it. Ask a lot of questions!
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My hospital experience was actually quite pleasant except that the surgeon said I would be put to sleep and not remember the procedure and neither one of those two things happened. I was given a local and was aware the entire time. Even felt a bit of pain.
I am up tonight because the darn thing just hurts...even laying on the opposite side (I'm not a back sleeper). Hope I adapt to this darn thing soon.
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