living with a port

beadmom

I am on my 6th week of Taxol & Herceptin and was asked if I would like to have a port installed instead of IV through my veins. So far my veins have held up, so that was not a problem. I have read that removing a port can be a problem as skin tissue can become attached. What is your opinion?

Bill.S

Hi beadmom, Had my port installed 7/8 and used it for the first time 7/14. I'll be getting weekly either one thing or the other for a year.
I wasn't asked if I wanted one the onc just said I needed one so I got it.On 7/21 they tried to draw blood from it but couldn't because sometimes the tube is up against the wall of the blood vessle. That didn't interfear with the infusion at all so the stuck my arm to draw blood--no big deal.
It does sting when they put the needle in the port but there are numbing creams available if that is a problem.
Don't know about any problems associated with removal but it does need to be flushed regulary if not in use. I have a 3" incision about 2" below my colar bone. I have also read of under the skin ports for the arm.
Sorry not much help.
Bill S 56 yr old man who HAD cancer----survivor

mmontero38

Hi Bead: I had a port while going thru chemo. Because of the chemo, oncologist suggested I get a port inserted since my infusion damaged the veins. I had no problems with the port and had it removed 2 months after my last chemo. I guess your decision should be based on how many more treatments are left, and does your oncologist feel that your veins are deteriorating. Hugs, Lili

chenheart

Hi Bead~ I had a port and had NO problem getting it removed. Well, physically I didn't but emotionally I did~ my Dr wouldn't let me have it removed for a YEAR after chemo! Even so, I had no skin adhearing to it at all...

I would not have opted for a port if I had good veins; as yours are still good, why is your Dr recommending it? I would ask!

It makes infusions and labs so much easier which is a boon to be sure, but I would ask why just to be ornery! :-)

Hugs,
Claudia

Unknown

Hi, Bead. I got through 8 chemos and am now doing herceptin without a port. No problems. Except once. I had to go to another location for my chemo and the nurses had to try 5 (count 'em, I did with tears!) times to get the IV started and then a few days later I had pain in my vien that lasted a couple of months. Not major, but not fun. I think that the skill of the chemo nurses is a key factor. If you are having no problems yet, then maybe do ask your doctor why it is necessary. Frankly, psychologically, I was not into the port idea. Not that I love IV's either. By the way, each time I had chemo there were different nurses for that infusions. They seemed to have favortie sites for insertion and thus the viens chosen were rotated. Best wishes..love, Joyce

Unknown

I had no problems with my port either. The second infusion had to be done through my wrist because they could not get a blood return from the port----turned out the tube was hitting the side of the blood vessel. But they resolved that for the next infusion by having me inhale and throw my arms and head back at the same time. Somehow that jiggled the catheter just enough to do the trick. The port was a blessing. It stings a bit when they access it, but if you put the numbing cream on 1 hour before it really works well. Also, because of the port, I didn't have an IV hanging off my wrist or arm(seeing that makes me nauseaus). Like Claudia, my oncologist made me wait one year after treatment before having my port removed. I think they figure your body has been through a lot and it needs rest and revovery before going through another surgery. I would definitely recommend getting the port especially if your veins are getting irritated. The only case of the skin growing onto the port that I have ever heard of is with Lance Armstrong(I read his story in his book "Its not About the Bike"). Mine was removed without a problem. If you want to do it, go for it! Good luck, Eil

seof

I had a port installed for chemo because I was going to have chemo for a long time. I have had IVs in the arm before, and I am very, very much in favor of the port. They put you to sleep for the surgery. I took Tylenol the first day after surgery, but had no problems. There is a small prick (like sticking yourself with a sewing needle) when the nurses insert the IV, but it does not keep hurting after they take it out like IVs in the arm. Occasionally mine has gotten blocked for drawing blood (does not effect the infusion as long as they are still able to flush it). There is a substance they can use to open it up again (at my center the nurses call it "roto-reuter"). I have not heard of anyone having trouble having the port removed. One of the patients at the center I go to had to have his replaced because of an accident at work where a heavy object bumped his shoulder and dislodged it, but the majority of people who have ports do not have significant problems. Talk to your Dr. about any concerns. Also, if you can talk to other patients at the center you go to, they may be able to give you more information.

I am still taking Herceptin infusions every 3 weeks for 8 more months, so there is no talk of removing it yet. I have been told to get it flushed every 8 weeks when it is not being used for infusions on a regular basis. Apparently there is no significant danger of leaving it in for a long time.

FYI: I ordered a book from the ACS online bookstore called "A Cancer Journey" which has very useful info. You can also look up info on ports on the ACS website. Personally, I think it is well worth the surgery to put it in. You will make the best decision for YOU.

best wishes, seof

beadmom

chenheart said:

Hi Bead~ I had a port and had NO problem getting it removed. Well, physically I didn't but emotionally I did~ my Dr wouldn't let me have it removed for a YEAR after chemo! Even so, I had no skin adhearing to it at all...

I would not have opted for a port if I had good veins; as yours are still good, why is your Dr recommending it? I would ask!

It makes infusions and labs so much easier which is a boon to be sure, but I would ask why just to be ornery! :-)

Hugs,
Claudia

Thanks for the suggestion. I thought it might be easier for them!

beadmom

Bill.S said:

Hi beadmom, Had my port installed 7/8 and used it for the first time 7/14. I'll be getting weekly either one thing or the other for a year.
I wasn't asked if I wanted one the onc just said I needed one so I got it.On 7/21 they tried to draw blood from it but couldn't because sometimes the tube is up against the wall of the blood vessle. That didn't interfear with the infusion at all so the stuck my arm to draw blood--no big deal.
It does sting when they put the needle in the port but there are numbing creams available if that is a problem.
Don't know about any problems associated with removal but it does need to be flushed regulary if not in use. I have a 3" incision about 2" below my colar bone. I have also read of under the skin ports for the arm.
Sorry not much help.
Bill S 56 yr old man who HAD cancer----survivor

I am having weekly IVs and probably will for a year. How often is it flushed and do you do it at home? Thanks for the input!

beadmom

seof said:

I had a port installed for chemo because I was going to have chemo for a long time. I have had IVs in the arm before, and I am very, very much in favor of the port. They put you to sleep for the surgery. I took Tylenol the first day after surgery, but had no problems. There is a small prick (like sticking yourself with a sewing needle) when the nurses insert the IV, but it does not keep hurting after they take it out like IVs in the arm. Occasionally mine has gotten blocked for drawing blood (does not effect the infusion as long as they are still able to flush it). There is a substance they can use to open it up again (at my center the nurses call it "roto-reuter"). I have not heard of anyone having trouble having the port removed. One of the patients at the center I go to had to have his replaced because of an accident at work where a heavy object bumped his shoulder and dislodged it, but the majority of people who have ports do not have significant problems. Talk to your Dr. about any concerns. Also, if you can talk to other patients at the center you go to, they may be able to give you more information.

I am still taking Herceptin infusions every 3 weeks for 8 more months, so there is no talk of removing it yet. I have been told to get it flushed every 8 weeks when it is not being used for infusions on a regular basis. Apparently there is no significant danger of leaving it in for a long time.

FYI: I ordered a book from the ACS online bookstore called "A Cancer Journey" which has very useful info. You can also look up info on ports on the ACS website. Personally, I think it is well worth the surgery to put it in. You will make the best decision for YOU.

best wishes, seof

I definitely will look into the pros & cons of a port. I have an aggressive cancer which comes back with a vengence when the meds don't work. Oncologist will go week by week with my health so I have no idea how long I will keep this up, she says we will see in a year. Could have to change drugs again down the road. Hope not because I want to get my strength back! Thanks !

Bill.S

beadmom said:

I am having weekly IVs and probably will for a year. How often is it flushed and do you do it at home? Thanks for the input!

No you don't flush it the nurse or doctor does and how often needs to be answered by the doctor. It is flushed every time the nurse or doctor is going to use it but when they don't need it any more and it is just sitting there idle, it needs to be kept open so they will tell you when to come in to flush.
Asked my nurse today about the numbing cream and she sent a 'script to my drug store for it. She said it is now generic so less expensive. Ask your doctor for it. It's not horrible having them stick through my skin to access my port but NO pain is better than some pain.
Hang in there beadmom.
Bill.S