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Port pain - update 10-08-09

tnstudent's picture
tnstudent
Posts: 45
Joined: Aug 2009

I am concerned about my husband. He has a port in since 9/4/09. He is his first round of chemo on 9/15 with no problems. However, every once in a while he has pain in the area of the port. Is this normal? Is he doing something wrong like working it too much or lifting too much? Should we be making a special call or trip to the surgeon or Oncologist? Any advice would be appreciated. It does not occur all the time just every once in a while.

pokismom's picture
pokismom
Posts: 153
Joined: Jul 2009

Hi,
Not sure about everyone else but my port hurt for a long time, I would favor that side of my body. If it's really bad though mention it to the dr next time you guys are there. Even after I took mine out, it still bothered me and it's been a year, I'm guessing everyone is different, that's how I felt too.
Take care
Donna

dianetavegia's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

My port was put in back in mid January and taken out on Sept. 2nd. Even toward the end, the seat belt, my bra strap, a hug from a friend could cause discomfort later in the day. If I slept on my opposite side or tummy, it would ache for days.

Remember, hubby has a hard piece of plastic on top of his muscle. It doesn't belong there. Eventually it won't be as sensitive. He might have slept on his side.

I have a teeny nerve type pain in the area where my port used to be. That's three weeks post removal. :O)

God bless,
Diane

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

....it's not so much pain in that area that I have, I had it replaced a couple months ago, but it's just real tender and sensitive, It's definitely hard like Diane said for me to wear bras and have a seatbelt on, because of it rubbing up against, otherwise, it's just fine...but to the touch...it just feels weird.

Hugsss!
~Donna

tnstudent's picture
tnstudent
Posts: 45
Joined: Aug 2009

Donna,

He does not complain about it being sensitive. It does not bother him to touch it or when wearing a seatbelt or anything like that. It just comes and goes but he has been hurting a lot today. He almost fell one time when the pain hit him. I think he might have over did it yesterday though. Thanks for the replies.

Amy

tnstudent's picture
tnstudent
Posts: 45
Joined: Aug 2009

Diane,

It is no longer sensitive. He just has really sharp pains sometimes where the port is. Today he almost fell in the yard when the pain hit. It does not hurt all of the time. I think he might be overdoing it or something. He has chemo treatment #2 on Tuesday.

Amy

Annabelle41415's picture
Annabelle41415
Posts: 4404
Joined: Feb 2009

If he almost fell in the yard because of the pain than something else is going on, this just doesn't seem normal. I have pain if I hug someone but it is only because mine is so close to the surface and on top of the collar bone and I'm relatively thin so it sticks out, but not just working in the yard would cause this. Please have him check with the doctor about this. It might be pressing on a nerve or something, but I'm not sure. Chemo infusions had no effect on how it felt, only getting the needle I could feel being put in and it was not often because I used the cream. Get it checked out.

Kim

tnstudent's picture
tnstudent
Posts: 45
Joined: Aug 2009

The pain was so sharp he said was reason he almost fell. He helped mow the yard and did the weedeating a few days ago. Then yesterday our car tore up and we had to tow it home. Then he was carrying the jack and then working underneath the car. A lot of straining and such trying to get the car working again. This was our transportation to treatments and testing. :( So this is why I think that he has over done it with a lot of heavy lifting and too much straining and exertion yesterday. Oh and forgot he was helping the neighbor move all last night too.

Amy

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

He ia doing too much heavy lifting! I remember the surgeon telling me not to be lifting or carrying things over 10 lbs! not too strain yourself, yes, he seems to be trying to do too much, and needs to give it more time to heal. I'd tell him to just take it easy for a couple weeks, I know my port you can see right through my skin, since I'm thin, and it looks like this skin just covering it, yet you can see the whole shape of the port, and it raised above the collarbone, he needs to just take it easy and give it time to heal. And to even shower with your back to the shower for the first couple of weeks, hope that helps and he feels better soon!

Hugsss!
~Donna

tnstudent's picture
tnstudent
Posts: 45
Joined: Aug 2009

Donna,

That is what figured that he was doing to much. I didn't want him to help with the yard but he is tired of not being able to do anything since the surgery and wanted to help. Then the car tore up and he is the mechanic and that is our transportation to treatments and such plus I am trying to find a job and he was trying to get it home and then figure out what is wrong with it. I know the doctor told him not to do anything for 8 weeks and he is only 7 weeks out of the colon resection and 24 days since the insertion of the port. Plus this is his off week for chemo and he was feeling so good he forgot about taking it easy. I am putting my foot down and not letting him do anything else for awhile and see if it will ease up. Thanks for all of the help and support.

Amy

DennisR
Posts: 148
Joined: Sep 2009

Hi Tnstudent,

I also had a lot of difficulty with pain associated with the PortaCath device inserted in my collar bone the first time I had cancer. Like your husband, I also probably worked too hard, (trying to get some sort of normalcy back into my life by staying busy, I suppose). To make matters worse, the Portacath eventually stopped working properly and I had to hold my arm up in a certain position to get the Chemo infusions otherwise the pump would start beeping and show an occlusion.
The second time I was Dxd and required Chemo, I talked to the Dr and had an alternate Catherter installed deep into a large vein in my left arm. I think it was called a Dual catheter, or super cath , it required an ultra sound machine to find the vein, but it had 2 tubes in it and worked perfectly with hardly any pain involved, I just had to flush it every day. You might want to talk to your Dr and look into the posibility of having that installed instead of the Portacath.
When I finally had the Portacath removed, the site continued to be painful for quite a long time and it was difficult to remove because cartlidge had grown around it and had to be removed surgically as well.
Obviously I'm no fan of Portacaths.
DennisR

grammadebbie's picture
grammadebbie
Posts: 424
Joined: Jun 2009

Hi Dennis,

I think it's called a PICC line. I had one also and it worked great.They put it in while I was in the hospital for my bowel obstruction, resection surgery. I couldn't eat and was very weak so they used that to feed me. Then they used it for my chemo. I had it removed after chemo so it was in about 11 months. No problems

Blessings to you,

Debbie (gramma)

DennisR
Posts: 148
Joined: Sep 2009

Hi Debbie,

When I had the BMT in February they put in an even different type of Catheter that had much larger tubes to facilitate the Stem Cell Harvest as well as the Chemo and frequent blood samples etc etc. Now THAT was a device I could have learned to love, (under different circumstances of course), it made everything so quick & comfortable it was a breeze, I only had to change dressings once a week and it worked perfectly, Stem Cell Harvests, blood samples, Chemos, and platelet, and plasma transfusions, they all just drained in or out like magic.
I believe that one was called a Hickman line, and you are correct, the other one I liked was the PICC line. I used an ace bandage to hold it in place and keep it clean.

Thanks for the post, Debbie (Gramma), I'm a Grandpa too.. Keep on keepin' on.
DennisR

grammadebbie's picture
grammadebbie
Posts: 424
Joined: Jun 2009

Hi Dennis,
Sounds like you have really been "fighting the fight", keep it up. Aren't those grandbabies the best thing to chase the blues away. I want to be around a long time and watch them grow.

Blessings to you and those grandbabies,

Debbie (gramma)

PS..What does BMT stand for?

KFen725's picture
KFen725
Posts: 108
Joined: Jul 2009

I think this is pretty normal. My mom had pain in her port area (especially during chemo treatments while it was accessed) for a good few weeks at least after it was "implanted". It gets easier as things heal and time goes on. Wishing you well!

tnstudent's picture
tnstudent
Posts: 45
Joined: Aug 2009

My husband is still having pain above the port area. He is no longer lifting anything not even a dinner plate with that arm. It causes too much pain. We called the oncologist on Monday and they ordered a port dye study for Tuesday of this week. He had the study done and the port is working fine and properly. No problems there. I called the oncologist back and they suggested he go to the nearest emergency room to be checked out since he fell out in the floor twice from the pain. I took him to the ER on Tuesday afternoon. They ran bloodwork and there was no evidence of infection or heart problems. They did an EKG which was normal as well. They did Xrays and the port is in the right location. They admitted him overnight for observation for chest pains and feignting as they called it. He was on a heart monitor and blood draws every few hours. They ruled out pneumonia or a collapsed lung. So far they can not find any reason to explain why he is having this pain. It started out to be intermittent pain but now is pretty much constant. The only thing his medical doctor said it could be is muscle spasms. He increased his muscle relaxers from once a day to 3x a day and increased the pain meds. So far this is not helping or making any kind of difference. He is still having a lot of pain and near falls. I consulted the surgeon to see if it could be a possible pinched nerve or some other nerve problem and he said "Give him a pain pill." I tried that it didn't work. He said "Maybe they need to increase the dosage." Well they have tried that and it is not working. He did not seem concerned and says it is not a problem with the port. He really just blowed me off and did not take me seriously. I was frustrated. The oncologist said to wait till Tuesday which is his next appointment and chemo treatment day.

I am at a loss and don't know what to do. I am thinking that he needs to go to the big city and be checked out where they did the surgery and port insertion but then again the surgeon acted like it wasn't his problem. Something has to be causing this pain and making him fall out in the floor when the pain hits him so hard and severe.

Tonight when he went to the bathroom at the store and had a bowel movement he said there was a little blood on the paper. I am worried about that as well. Keeping an eye open to see if it continues. I fear we may be headed back to the hospital in the next few days.

I am just so confused as to what to do and which way I am going at the moment. Oh did I mention my mother just was diagnosed with Basal Cell Carcinoma (Skin Cancer) this week and having some severe female problems with bleeding and she has had a hysterectomy so this maybe some kind of female cancer. I am starting to get overwhelmed because I am the only one here to take care of all that is going on. Mom has no insurance either. I was denied disability and trying to find a job on top of this.

Sorry to vent, but feeling overwhelmed and reading this board helps me out a lot. Thanks for listening and for the support.

Amy

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

...Your hubby needs to go elsewhere, I would hate for a doctor to blow me off with a pain pill, when there is pain there, no one needs to suffer, and there has to be something more then a pill can handle.

It's a rough time, and so sorry to hear what you're going through, about your mom and all, things hopefully will get better before they get worse, I always try and stay positive and think hopefully something good will happen with all this bad stuff going on. I hope things do get better!

Hugsss!
~Donna

tnstudent's picture
tnstudent
Posts: 45
Joined: Aug 2009

Well they did a port dye study and it was normal. He still has pain severe at times. They sent him to the ER to do blood work to check his heart and lungs. All blood work was normal, xrays were normal. There is nothing to explain the pain he is having. He had treatment #3 on Tuesday and met with his onc. He is setting him up with a new surgeon and we meet with him on the 19th. The onc ordered for the port to come out and place one on the other side. He said it should not be having pain and the only option is to take it out. I am glad that they are finally doing something about this.

His treatment this week hit him a little harder and faster than the previous 2. The side effects are a little stronger and his diarrhea and nausea were a few days earlier. He is a real trooper and still fighting along. So far everything has been going really well overall.

Thanks for the support from everyone on here.

Amy

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