Port Problems

[AnneRM]

I was wondering if anyone out there had a problem with their port. I have had my port since Feb/07 and now they can't get a blood return. A procedure was done in the x-ray department to check the port. Results showed the port was in the vessel, but its hitting against something that stops any blood to return. Is this something that happens sometimes?
When the port was inserted (day surgery) I had a hard time and then I found out to one of my visits to ER that my lung was puncture. (4 days in the hospital) Does anyone have discomfort with there port? Since day one this port has been uncomfortable, especially when I lift my arm to put a T-shirt on or try to sleep on that side.

I finished my 6 rounds of chemo in May and start Herceptin in June. So far I have had 8 rounds of herceptin and 9 to go. I am nervous if they have to replace this port. I almost felt like quiting and telling them thats enough and remove the port. I know that sounds harsh, but I been to hell and back. (wouldn't go into it) I thought I would get a break when I got off the warfrin, (which was continuous blood work) but between Muga scans, MRI, CT which you need injections, my arm is exhausted. I don't understand exactly why they can't use my port. (when it was working) for these injections. Most response when I ask is, we are not aloud to use the port. My veins weren't good to begin with and now it's impossible to get one.

I was so strong in the beginning counting down my chemo treatments and getting excited about my last one, and looking forward to getting this port out. Then I found out that I would have it for another year because I needed 17 treatments of herceptin. My onc dr told me its not as bad as the chemo I received, but I got along good with my chemo treatments. I have had more side effects from herceptin.

Would appreciate any input on this.

Thanks,
Anne

[juanita]

I had continuous discomfort and also couldn't lift my arm or sleep on that side. At times it just downright hurt. And for them to access it I had to practically stand on my head. So I had it removed after 2 treatments and finished without it.

[Bev]

Hated it. I have veins that I think could have survived anything thrown at them. They tell you the advantage of ports is you can everthing done from it. Only onc nurses are trained to use them and they aren't there for all the other tests. They only used mine once for anything besides infusion.

Get Echos instead of MUGAS, one less stick.

Herceptin isn't caustic, but if it takes hours to find a vein, maybe you would benefit from a new port somewhere else. My 2 cents, BB

[Sheila]

THere is a new port out by Bard called a pressure port, it is able to be used for CT's, MRI's that have the pressure injection, which many new ones do.

[Joanne S]

My oncologist told me that a recent study revealed that 9 months of Herceptin was just as effective as 12 months. Perhaps you could make inquiry to your oncologist. I'm not clear about your lung problem---did that have something to do with implanting your port? Is that what is effecting your current blood draw problems?

You are obviously HER2 positive, but depending on your bc diagnosis, type and staging specifications, your oncologist may agree to discontinue your Herceptin early if it is not a risk for you. Many patients discontinue Herceptin early due to a decrease in heart ejection fraction or other problems so it would not be that unusual to stop Herceptin early.

It sounds like you need to have a thorough discussion with your oncologist and then your surgeon.

I have had many diagnostic tests and have never had anyone access my port because the technicians/nurses are not authorized, allowed or trained in using the mediports. Personally, I prefer it that way to ensure no problems are created at that time which may effect the functionability of administering my chemotherapy.

I feel for you---I know that all of this has not be easy for you, but if you don't have good veins for enabling blood draws, I highly suggest getting a port implanted in your chest. I have been fortunate that I only felt uncomfortable with my port the first two weeks. Blood draws from my port are sometimes difficult to start and I have to do a little dance, lay down, get us, swing my arms, legs, etc (which is no big deal) and then it works ok---other times the port draws flow is just fine without having to dance.

Hang in there. The most difficult and worst parts of your bc journey are behind you now. I hope all this works out fine for you. Keep us posted.

[Brenda_D]

They can't draw blood from my port either. They said as long as it infuses, that's what we need.
Mine was sore for a long time too.
It just recently stopped hurting when I sleep on that side.
I got mine in Jan. 07.

[BonnieR]

Hi Anne, I just posted here on another thread about being "portable". I too am finding my port site tender. It was installed the end of Oct so I am hoping it still has some healing to do.But for now I have trouble with clothing against it. The area is still sore. And the onc nurses have to put me through some contortions before they are able to get blood from it...

[AnneRM]

I will ask my onc and surgery about this new Pressure Port. Do you know where they usually insert this port?

Will also ask my onc about having echoes, one less poke sounds good to me.

Joanne my lung was punchure during the insert of the port. They say sometimes this happens. I was just one of the lucky ones.

I would like to thank you all for your positive comments. I really needed this evening.

I was at my cousin's wake this afternoon. He died Friday at the age of 37 of lung cancer. We meet up alot at the chemo room. Ronnie was very quiet and shy. He wasn't sick very long. After I left the wake and was on my long drive home, it really hit me....... this cancer. I am so busy being strong that it finally hit home. I had to be strong, I have been doing this journey alone. I have family and friends, but no body understands really what you go through. That is why this board is so great. The support here is unbelievable. Many thanks to you all.

[Lolly]

Hi Anne,

The port that Sheila mentions is actually called a "Power Port". Here's a link to the site describing it:

Bard Power Port
http://www.crbard.com/news/innovatio...lantedPort.cfm

I had my old port replaced recently with this type of port specifically so I could receive the CT injections and other "high speed contrast" injections, as I have lymphedema in both arms and needle sticks are a real danger for me as they aggravate the lymphedema. Your surgeon will have to confer with the CT/MRI department to insure that their imaging programs will accomadate the slight difference in the speed at which the dye circulates through the system, as the software is set to a precise timing related to the injection.

The procedure for placing the power port is the same as the one you underwent for the port you now have, hopefully there would not be any complications. Mine is placed on my left upper chest, just above the bra line. I had no problem with my procedure, and the port is comfortable although still somewhat tender to sleep on that side(it's been one month since the surgery).

I haven't had a scan yet which would necessitate using the port, but my nurses at my infusion room have told me to just come there (lucky for me located just across the way from the imaging department),and they will access the port for the scan techs, leaving the cathetar line in place for the techs to plug their line into, then I will go back to the nurses after and they will withdraw the line. That way no problems with inept techs damaging the port as it does take special training to do an access.

The reason they don't use regular ports for these type of high speed injections is the contrast goes in at a much faster rate than the slow IV drips, and it could possibly "blow" the catheter line from the port resevoir. Not a good thing. The power ports are designed to withstand the high speed injections. They are of course fine for the usual IV's and draws.
Hope this helps.

<3 Lolly

[MAB1943]

hi Anne RM I have a port too and it was put in Dec 06, I have had numerous trips to the outpatient dept to have it checked. Althought there is no flow problem yet, I do have discomfort at times. I was told to just take advil for it, and it did help.
I KNOW what you mean about flying through the chemo and now having a problem with the herceptin. I did too. I thought the chemo would be bad and the herceptin is supposed to be nothing like the chemo, but I really have problems with side effects on herceptin. I have been on it since April w/taxol and then every week til June now I go ev ery 3 wks for the hercp. I have nose bleeds all the time, my nose is constantly running and my nails are so sore from breaking down below the nail bed. Aches and pains in joints and muscles and I am irritable,and have occassional insomina. I was supposed to be done with the hercp in dec but they tell me now i have to go until end of March. do you or anyone out there have these same side effects too.
Anyway Anne Let me know how you make out. It is a constant ordeal but then I think of what it would be if there were no herceptin.

[MAB1943]

I must add that I feel that I like the port more than IV's I just hate IV's in the arm
and yes the only people versed in using the ports are chemo nurses etc. anything close to my neck sets up an irritation and causes me to be tender and sore.
That I can put up with but the rest of the side effects are very troublesome for me.
Mary

[gin-tx]

Dear Annie,

I had problems with port almost from beginning, couldn't draw blood, hard to do Herceptin treatments. Finally they only could get blood from my arm so I said enough, let's get it out and replace it. My onc agreed, had it removed and a new one done, I refused to go thru tests to see why it wasn't working. The new one is one of the high tech ones, works wonderfully, they can draw blood, do treatment. The nurses are right, only ones who can access your port are the chemo nurses. I have only one usable arm as I have some lympademia in ot her arm from two bouts of bc, but one was so long ago it's easier to use for CT , labs at internest, etc. Think about replacing the port, it's worth it. I never knew if mine was against the chest wall or what, did not ask. Just glad to get it out of there.

ginkott1@aol.com

[weezie1053]

Annie,

I completed 16 rounds of chemo in Feb 07 and I completed my Herceptin in Nov 07. I had problems with my first port. I was fortunate that the one of the senior nurses in the Fusion Center @ UVA made some noise and insisted that the Oncologists do something. A test confirmed there was a problem with the line, and it was replaced. The second port rarely gives me any problems. I also think in time, you become more tolerant of the port and the use of it. I can remember using numbing creams and ice. Towards the second part of my treatment, I simply counted 3, 2, 1 with the nurse, and they would stick me. (Saved time for shopping later in the day...) I have also found there are different type of needles that affect the "draw" of fluids. I went in 2 weeks ago to have my port flushed, and one of the nurses was having problems.Once again, the senior nurse intervened. She came in and looked at the needle. She told me she refused to use that particular type of needle, and she went and got a different type. I have found some nurses are more skilled than others in accessing the ports.

I hope it also becomes less aggravating for you.

Louise

[AnneRM]

I seen my onc Dec 4 and thought there would be a decision made about the port. The onc nurses thought that maybe he would contact the surgeon and then make a decision on what to be done. When I asked him he said everything was fine and that I could get my treatment that day. Which I never got because the onc nurses weren't comfortable with it with no blood return. Plus the flush was feeling really cold going in and that put some red flags up. They tried everything. They decide not to give me the treatment and then contact the dr, but he was on his way home (2 hrs drive for him) He told them to send me up to vaslucar dept for another scan of the port. This was done on my last treatment when I had problem with no blood return. They couldn't do the producer until the next day and then I got my treatment. I have 8 more to go.

Bev I asked him the difference between Muga and an echoes test. He said they were completely different. I asked him to explain the difference, but he didn't make things clear. He was in a bad mood that day and was very short with me. He wouldn't be the next time because I am not taking anymore. Bev can you explain the difference between the a muga and an echoe test.

I have an appointment next Tuesday with my surgeon for a 3 month check up and will ask her myself about this port problem.

Sheila I asked the cancer clinic about this power port, but they have not heard of it. I also going to ask the surgeon if she has any knowledge of this port.

Merry Christmas to you all,
Anne

[MAB1943]

Anne, I find there is no excuse for a doctor to treat you like that because her or she is in a bad mood. They can be in a bad mood at home not while they are practicing. It is very unprofessional and I would tell them that.It is his/her job to explain anything that isn't clear. That is part of his job. He needs to answer your questions.
Hope you have a Merry Christmas and a better year ahead.
Mary

[Chelee]

Anne, When I went through chemo I know at my cancer center the nurses would *not* do the infusion if they could not get a good blood return. So that is normal. As far as the flush feeling really cold some times in my experience that is just from them doing it too fast. For instance if I let them speed up my herceptin it was cold and I didn't like the way it felt so I made them slow it down. But I think its a good call if your port is not working right.

As to the muga...I've personally never had one...I always had ECHO's. But from what I understand when you have a muga they take your blood & mix it with radioactive material & it has to sit for a while in the lab & then they re-inject it into you before doing the muga. They use some type of a gamma-ray camera to take pictures & a techician will interpet the results. Its more invasive & time consuming.

As to an ECHO you just go in and are asked undress and lay on a exam table on your left side. Then the (tech) sonographer will place a wand (called a sound-wave transducer) on several areas of your chest. The wand has a small amount of gel on it which is harmless to your skin. The sonographer will take lots of pictures of different areas of your heart and that's pretty much it. It is much easier then the muga...non-invasive and you are not exposed to any radiation or radioactive material. Its much better in my opinion. Any time I can avoid radioactive dyes and x-rays...I do. Plus its much faster then doing a muga. I'm not sure if one is really better then another...but it did seem like more women were having muga's. But it seems that most women that ask their onc for a ECHO instead of muga, there is never a problem. I hope that helps some.

I'm sorry to hear your onc was in a bad mood...there is no excuse for that. My onc is never in a bad mood...but she just WON'T answer my questions and its so frustrating. So I really feel for you. It would of taken your onc a few minutes to explain the difference. But no worries...thankfully we all have this board (thanks to Christinee & Joe) and someone will always answer your questions. Good luck to you.

Chelee

[gin-tx]

Dear Anne,

I have had problems with first port, it was removed as they could not get labs, had to use a pump to do chemo. I have one of the new power ports and it works wonderful. Was installed by radiation intervention specialist. Not every general surgeon knows how to get them to work. I'm pleased it's working. Had a hiccup last week and the onc thought it wasn't working correctly, they ran a Doppler test on the port and it was getting good blood flow through the part that is not in the chest. I can't explain it, just part of the whole mechanism. I hope it continues to work wel. Have a happy holiday season and let me know what your surgeon has to say.

ginkott1@aol.com

[dhealey]

I had problems with my port at first, they tried positioning me different, usually laying back in the recliner, almost like lying flat. This seemed to work. I always have echos instead of mugas, just as reliable. As for your onc being in a bad mood. He should save that for at home. He is there to answer any questions you have no matter how trivial he might think they are. I have no use for doctors who don't answer my questions. Might need to find a new onc. Best of luck with the rest of your treatments

[Bill]

Hi Anne! You hang in there. My wife, Nicola, had a Bard port implanted in 2005, and they had to recline her so that her feet were pointing in the air, and they said her port was "temperamental", lol. I can't remember the exact date, but that port failed and then they put in the power port and it worked great. They could access it, inject the dye for CAT scans, and then she would just walk down the hall for treatment. She also had nosebleeds when she was on herceptin. God bless you all, Bill

[Bill]

Hi Anne! I'm sorry to hear about your cousin. I hope you and your family are doing well. I forgot to say earlier that you don't have to take any guff from your onc. His attitude was uncalled for. It's your health, not his. Quick story-a fews years back my wife's onc. was killed in a plane crash, a wonderful man. We tried a new doc who once told my wife over the phone that her concerns about losing weight on chemo. were unfounded, because she "could afford to lose a few pounds", and then when my wife had other questions for her, the doctor literally told her not worry about such things because the answers were "beyond her education level". Some of you may remember Nicola's postings on those issues. Anne, we switched oncs. the next day. We were lucky enough to have a large group within the same practice to choose from, and the new doc met all of our needs. I hope you have an alternative to that onc. with the bad mood. You should feel comfortable asking any question and receiving an adequate answer. Stay strong, Bill