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/innovations/PowerPortImplantedPort.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

[gin-tx]

Dear Debbie,

Finally had to have port removed and a new high tech one installed by radiation intervention specialist, works like a champ. My dr has never been in a bad mood, must be someone else. Yes t hey all but stood me on my head to try to get labs, nothing worked after awhile. Blood thinners that had to sit in system for a couple of days, then they would try again, nothing worked. I finally got frustrated and said let's get it out of there and put in a new one. Wasn't that simple, they removed old one, attempted to get a new one installed, could not, dr made incision on other side, same. He thought the cancer may have spread to my lungs. Had to go back to onc and let him make decision but cancer had not reappeared so far. Hope you continue to do well, and your port works for you. Let me know your progress and keep in touch. We're all in this same fight together.

ginkott1 @aol.com

[AnneRM]

I have already switched onc dr already. My first onc dr was worse. He didn’t even explain correctly about both tumors. I thought I only had one, the one I found under my arm. Second after I had my port inserted 4 days previous I complained about a hard time breathing. He got an EKG done on me and everything was find and receive treatment that day. During my chemo the onc nurse notice that my wrist was swollen, she contacted the dr and then I found out that I had phlibites. The next day I was burning up and my hand was cold. Onc nurse couldn’t get in touch with the dr and told me to go to ER. I explained to the ER dr about my breathing problem and she send me for an chest x-ray and then an ultra sound on my wrist. Everything was ok with my wrist, but found out I had a puncture lung from when they put the port in. The following day my onc dr visited me in the hospital and he made it clear that I didn’t have a puncture lung the day before when I received chemo. (I guess he was covering his tracks). Then I read a letter in my file that he wrote “patient denies having breathing problems”. Also, I found in my file a comment that I have an apprendectomy, which I didn’t. Third, on my next visit I told him about the rash on my wrist where the phlibites was and then he wrote me out a prescription. When I filled out the prescription and I noticed it said to take one day b4 chemo and 3 days after, so I took it right away because I had chemo that day. When it was time for my next chemo the onc nurse asked if I took my prescription. I asked what one and she said the one he gave you last time. I told her I took it back then because I thought it was for my wrist and that the chemo was irritating it. Then she told me to take one that day and come back the next day for chemo. I wasn’t too impressed because I live 45 minutes out of town and that would be my third trip.(I had blood work the day b4). After leaving I meet my onc dr on the elevator and I said no chemo today. He told me that I should learn how to read a prescription bottle and I told him that he should explain to the patient exactly what the prescription is for. I was starting taxotere and that is why he wrote out this prescription. I know better now and I will ask questions for any other prescriptions. This was in the beginning when I knew nothing and put all my faith in the doctors. With sites like this gave me the tools to learn and educate myself. I think doctors like it when you don’t ask questions and just go along with their routine.

We only have 4 onc doctors, so I might be running out options. I don’t know maybe they will think I am a problem child. I have to say the onc nurses are excellent and very informative.

Another thing, when I call the administrator for the cancer clinic and asked to change doctors they didn’t even ask why, but I made sure I told them why.

It's been a year today Dec 15 that I had my mastectomy.

Sorry I when on too long. Thanks for listening.

Anne

[AnneRM]

Chelee I am going to ask my doctor that I would like a echoe instead of a muga. I thought I was getting 2 injections of something when I went for my Muga. Now I know that one was removing blood and the other mixed with radioactive dye. Thanks for the infomation, it feels great to know exactly what is going on when they do these tests.

Thanks,
Anne

[goops]

I also had a problem with blood return on my port - they sent me to radiology to find out what the problem was and my port had broken. A piece of my port was in my heart. I had been running a fever for 3 weeks and within a day of them removing my port - my fever returned to normal. I still had 12 taxol treatments to go as well as a year's worth of Herceptin, but I told them I would not have another port. They just use an IV for me now. My port never worked right from the beginning, the IV's have been easier. If your port is giving you too much trouble talk to your oncologist about just using an IV.

[Roz]

Hi, I have had my port in almost 3 years, and I don't get a blood return anymore.As I am now on Tykerb, I have the port flushed every 6 weeks. No problems. It took about 2-3 months for the site (inner arm) to settle when I first had it inserted.

[Sheila]

I have had my port for a month, implanted in my chest...it is a Bard Port. Much of how a port functions depends on the placement, in other words which vein a port is placed in (there are several they can use) and which side....it seems ports placed on the left side are more in a direct line. But mine is on the right due to LMRM. I guess I am lucky, I had an excellent surgeon who placed it perfectly...I could tell by the excitement of the chemo nurses when they asked which Dr. placed my port...they almost fight over accessing me as it is so easy. If the lumen or tip of the port rests against a vessel wall (sometimes this happens after a while when a fibrin type sheath grows over the port tip), it is almost impossible to get a blood return, they have you take deep breaths, lie down etc, trying to change the position of the tip. Its like trying to clean up with the vacuum hose while your hand covers the end....not going to happen. Ususally (a wise move) they will not give chemo if they can't get a blood return....that is their verification that the medication is truly going where it is supposed to.

[AnneRM]

I had my 10th herceptin treatment on December 28 and no blood return. I was sended up to X-ray instead of valcular this time. I got the x-ray right away, but we had to wait a hour and a half b4 anyone looked at it. The onc nurses had to call 4 times b4 they got the ok to give me treatment. There for 4 hours to get a 30 minute treatment.

Spoke to the surgeon about the port problem on my last check up Dec 18 and she thought since I only had 8 treatments left it wouldn't be necessary to replace the port. I quess I will have to get an x-ray everytime b4 treatment. I have very bad veins, so an IV is out of the question.

Anne

[tdonnelly]

Hi Anne,
I had a Power Port inserted. Sometimes the nurses have a hard time with blood draws also. I am not sure what causes this. Does the nurse use 2" needle ? My port has been used for Muga Scans, Bone Scan, Lung Scan, Chemo and Herceptin. Only certain nurses are trained to access the port. I insist they use the port only; I have had to go to my Chemo nurses for access. I have had minimal discomfort, but all in all not bad. I had serious vein damage done to my left arm during a Muga Scan and now refuse to let anyone use my veins, they are shot due to thyroid disease and years of blood draws. I plan on keeping my port indefinitely. Talk with your dr to see what type of port you have and if yours can also be used for testing procedures. Take Care.
Tamara
Invasive Ductal Carcinoma 11/2006 HER2+

[sally]

I've had my port since May 04. I have never had a problem with it and the nurses always comment on how great it works and want to know who put it in because I don't have a scar either. I guess alot of people have problems all the time. I can't stand IV's. I have very hard veins to access. I'm sorry you having problems. I hope all goes well. Sally

[goops]

I started out with very bad veins - but after the problem with my port I found that if I make sure my body is well hydrated with water and my veins work good. They have had less problems using an IV on me - then they had accessing my port. The herb Horsechestnut helps the veins as well.

[Unregistered]

I was just released from emergency hospitalization. The catheter of my PowerPort self-extracted from the initial location in the subclavian vein and after twisting itself around reinserted itself into my jugular vein, causing a complete thrombus obstruction. The port was surgically removed after treatment for the thrombus was started.

Needless to say now I face 90 days of blood thinners and healing before chemo can restart for a stage IV colon tumor.

[Chelee]

I am so sorry to hear you had to go through all that. What a nightmare for you. How long ago was this port installed before this happened? That is just awful and I can only imagine how scary that must of been for you. It's not like we don't have enough to go through with this nasty disease. I am glad they got it out and taken care of though without further complications. I have a power port in my chest and have worried about it moving, or coming apart. Especially since that's the same side I sleep on at night. I lay right on my right side and that is exactly where the catheter line runs over my clavical to my jugular vein. I'm always afraid it could get pinched off, twisted or moved in some way.

I will assume they can't access your veins till you can get a new one installed? The blood thinners will take care of it but I realize that is the last thing you wanted to deal with now. Try to hang in there as hard as I know that is to do.


Chelee

[ljbm]

I am so glad to hear that someone else worried about sleeping on the port side. They did not tell me when I had mine installed about such things, but I was always scared that something could go terribly wrong if I laid on that side. I was so blessed that I never had any trouble with mine. The surgeon at MD Anderson was the best. Prayers that you are back on your treatment schedule soon.

[fauxgypsy]

I had not read the whole thread when I posted the following. I am so sorry you had to go through this. I am going to leave the post below because I believe that we all need to understand that if it doesn't feel right then it probably isn't.

My first port hurt the whole time I had it. It sounds much like the problems you have had. It never worked well. A few weeks into treatment, I had some swelling around it and intense pain after chemo. I was the squeaky wheel and I continued to be so and made them take it out and replace it. I have had my power port for almost 4 years and most of the time I don't even notice it. If it it not working and is hurting have them schedule you for a relpacement. The power port has not really been used for any tests yet. There is always areason but it has worked well for me. I also had a different surgeon the second time around. It made a huge difference. Quality of life is very important and you sometimes have to be pushy about this.

[LOOKIN' FORWARD]

My port was installed 9-10 and it worked well altho it had "positional" problems & I had to be twisted up and down, back and forth, standing, sitting, etc. until it would work. Then when I was hospitalized it wouldn't work at all & they wanted to have 6 intravenous bags running at once so they performed a procedure in radiology dept. I think where they made an incision in my groin & inserted a thin tube or something that reached up to the port to clean off the fibrin that had grown on the base of the Power Port - it felt weird because I could feel it but it was painless and when they finished the port worked perfectly. In 3-11 there was no blood return so the oncology nurse used something like "Drano" to clean the port and that took about an hour. It's been so helpful to me in chemo to have a port & will have it used for my year of Herceptin. If it ever completely stops they just said I should have another one installed.

[Unregistered]

The port was placed 28Feb2011, one chemo treatment two weeks later - then the complete occlusion of the right jugular from the catheter moving from the subclavian to the jugular. I meet with my oncologist this week to discuss what will or can be done until a new "remotely placed" port can be surgically installed.

[jebp3]

Hi all: I share your pains living with ports. After 29 days of chemo over 4 years of fighting leukemia, my burned out veins got too painful so I got a port Jan. 12, 2011. It is a new Bard Power Port and it has been horrible. It is defective in every way imaginable. The infusion techs refuse to try to access it anymore. It cannot be flushed-can’t get blood back but then when the needle is removed, it literally sprays blood & bleeding is hard to stop resulting in massive bruising and swelling. The catheter is apparently defective since it kinked in a gentle curve and is 100% blocked. Bard refuses to discuss it. Please file an FDA complaint (Form 3500) as I did to prevent others having this horrific experience. LOL. Jim (jebp3)