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

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

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

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.

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.

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.

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

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+

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

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.

Re: Port Problems
 

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.

Re: Port Problems
 

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

Re: Port Problems
 

Re: Port Problems
 

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.

Re: Port Problems
 

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.

Re: Port Problems
 

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.

Re: Port Problems