Has anyone had a chest port installed?

Posted By
7/18/2014 5:56pm
View other posts by
Activity
Replies: 11

 

Hi there,

I know most melanoma patients don't receive chemo, which is the most common scenario for a chest port. But it's virtually impossible for the nurses to find my veins, and now that I've started an every-3-week infusion of PD1, we've decided that spending 30 minutes and many, many pokes is not worth it, and that a chest port shall be installed on August 7.

My question is, can the port be used for PET/CT and MRI contrast injections? Also, it seems surprising to me when people have mentioned using a "numbing cream" - does it hurt to have the port accessed?

Any other wise words would be greatly appreciated!

Thank you in advance,  

laura - stage IV with lots of brain and body mets. 

 

Hey Laura,

I'm also getting anti-PD1.  Mine is every 2 weeks.  About 6 months ago a begrudgingly decided to have a port installed.  Like you I was a very tough stick and it was starting to get old.  I'm really glad I made the choice and I think almost everyone that has the procedure says the same thing.  You can use the port for the contrast for scans.  Only problem that arises sometimes is when you are at a facility that does not have a qualified nurse to access the port.  That's happened to me a couple times but most facilities should be able to accomodate.  I was very unpleasantly surprised that the first couple times the port was accessed it did sting quite a bit.  The sting didn't last long but it caught me by surprise.  After about the 3rd or 4th time it was accessed it really didn't hurt much.  I've never used the numbing cream.  Just like with some IV's, some times there's a little pinch but not bad.  My facility has outstanding sterile procedures for accessing the port which is very important.  Best of luck to you.

Brian

I had a chest port (mine was a Hickman catheter, which is common, I think) placed for my TIL therapy and it was in for about six weeks total but they used it for everything — apheresis (a process to separate white blood cells from the blood), chemotherapy, blood draws, contrast, all the other various IV, IL-2, etc.  It was placed by an interventional radiologist, they used a local anesthetic, and they use image guidance to get it right.  A little sore the first day, if I remember correctly, but that was over three years ago.

I always just felt a little robotic with the thing hanging out of me, but that's a common feeling, I'm sure.  It is certainly more convenient in many ways.  Even daily blood draws at 5:30 a.m. at NIH I could just sleep through.  For me the biggest downside was maintenance, especially at home.  Inpatient, the nurses care for it, but at home, it still needed daily care.  It needs to be sterilely flushed and cleaned daily, covered up in the shower, just kept pristine — makes sense, but it is work.  We even had an hour-long "class" before going home on how to care for it.  They sent us home with a 60-day supply of plastic saline flush syringes, alcohol wipes, plastic covers for the shower, etc.

I did manage to inadvertently loosen it playing tennis the weekend before I was heading back for a follow-up appointment that was going to include having the port removed, so when my doctor went to start removing it, it came right out, no problem.  I was told that removing it is painless anyway, but...  it was good to have in, and I was glad when it was out, if that makes sense.

I had a port placed in early June before I started a PD-1 EAP. My veins had been getting worse and worse over the last couple of years between the surgeries, various therapies, and frequent scans. It got so bad last summer (when I was gettin Ipi) that it took them over 4 hours before someone finally got a catheter in. I decided after that experience that if I was going to do another IV therapy I would request a port. After failing Ipi last fall I was trying to get into a PD-1 trial and actually made an appointment to get a port. I ended up being disqualified from the trial, so I cancelled that appointment and went on the BRAF/MEK combo. When the combo began to fail in May and we headed off to join Merk's PD-1 EAP I set up another appointment.

There are a couple types of ports- some of them can have contrast injected into them, some can't. Mine is a "Power Port" which can have IV contrast injected into it for CT. I also have my blood draws done through it when I go for infusions. The first time it was accessed it was only 2 days after it was put in and I was quite sore so it was more painful than I anticipated. By the time I had another infusion it was healed and was much less painful. Still a bit more "pinchy" than the vein in the crook of your elbow, more like when they try for the smaller veins on the inside of my forearm, but the nice thing is that when you go for infusions and have to have scans, bloodwork, etc you only get one quick poke and it's done. I've never used lidocaine cream to numb it. I'm really glad that I have it, but it's not that "pretty"- it's a lump on my chest and no one can mistake it for anything else because the little nubbins that you use to figure out where the access point is are visible under the skin, and there's a small scar from the placement. They had a hard time getting it placed in me due to some changes to the pathways the vessels in my chest take (they've rearranged due to the many tumors that I've had in my breasts and lymph nodes). Due to that they had to place the tubing section higher in my neck than normal (typically they like to keep it below the collar bone, but mine is above). This means that the tubing is visible under the skin at the lower part of my neck and across my collar bone. For a while wearing a seat belt without a little padding was uncomfortable, but it heals really quickly and in my opinion it's 100% worth it, especially if your veins are overdue for a break. 

With mine I can definitely have CT contrast (which was really important to me) but because MRI contrast is so much less volume (and I would assume possibly the same for PET scans) my local office won't use the port for MRI. They've never had trouble finding a small vein for a direct injection (no catheter), so I'm ok with that. Right now all my scans are happening at the center where I'm geting PD-1, so they access the port for everything and it's really nice not to have to worry about the pressure from the CT contrast bursting a vein or having to have multiple pokes on both arms trying to get access. 

Mine's a powerport like ecc26's.  It's about 3 inches below my right collar bone.  It's about the size of nickle and protrudes out about 1/4-1/2 inch.  I'm a little lean so mine might protrude out more than the average.  Unlike Joe's, mine and ecc26's port are placed under the skin so there aren't restrictions on swimming and things of that nature.  Unless you are big into wrestling or martial arts fighting I can't think of many activities a power port would prevent you from doing.  I believe my powerport needs to be flushed at least once every 30 days but since I get an infusion once every two weeks it's never been an issue because the nurses do it before and after each infusion. 

Thanks for your reply, Brian. What are you having infused?

I was going to ask about swimming as well, so thank you for answering that question. I do believe it'll be a PowerPort  that I'll be gettng as well.

 

Laura,

Last August I started a trial combining ipi and nivo sequentially. Started with an infusion of nivo every two weeks for 12 weeks, then an infusion of ipi every 3 weeks for 12 weeks, and now I'm in the "maintenance stage" which is a nivo infusion every two weeks.  It's been a little bit of up and down for me during the trial but right now things are looking good.  After the first Nivo phase I had good response and just about 50% reduction in tumors.  After the ipi phase I had a slight increase in my two tumors and a breakout of mets in my right lung.  After returning back to nivo the mets in my lungs have disappeared and my two original tumors shrank again and are now basically stable.  Needless to say I can't say enough good things about the Anti-PD1 drugs.  I've virtually had no side effects and pretty impressive results.  I wish you the best as you start your treatment.  I think you have a lot to be hopeful about.

Brian

My husband has the power port. He has great veins, but makes his nurses and himself so nervous his blood often stops flowing during an IV insertion. He got the port for treatment of another disease about 9 months before he was diagnosed with Stage 4 melanoma. He is very happy with his port. He does use Emla on the skin that overrides the port, but I think it is more out of ritual than anything else.

 

Hi Laura,

I'm new to this illness but am a registered nurse who used to work for many years in HIV/AIDS before the fantastic combination therapies came on the scene. Central lines (ports and Hickmans) were frequently used for our patients who needed regular preventive IV antibiotics. They have been around a long time and are not new technology.

I used to teach my patients to use and maintain the port or Hickman line themselves and take ownership of it.

I realise that it is a slightly different care trajectory, but it worked very well generally - apart from one time a patient's dog decided to chew the end off a Hickman line whilst the patient slept on his sofa.....

Central IV access lines are great in my view. Sterile access is important so try to learn what you can about them in case you get a nurse who doesn't have much experience in managing them. The last thing you want is infection via a central line.

Regards,

Nigel.

 

I also am a hard stick, i had a picc line put in for my interferon treatment (hated it) when it was finished they removed it..Did my scan and found out the interferon didn't work so went to Yervoy..Doc wasn't going to put anything in because Yervoy is only 4 treatments but the nurses advised him on how hard it is to find a vein for them to do infusions so he order a port placement...I like it so much better than a picc line..With the port i can go swimming and take a shower without having to worry about covering it up so it don't get wet..It doesn't hurt much when they draw blood..Good luck!

Thanks everyone, for your replies. They're all very helpful. It sounds like it's going to improve matters for me and I'm happy to hear it's done as much for all of you.

Best regards,

laura

A port is installed  inside the chest.  Nothing hanging out of chest.( It is not a PIC line.)  I have had a double Bard Port in for 7 years now.  Came in very handy when a horse killed me in 2010.  Different ports can have different uses.  I believe a "Power Port" is one of the most versitle (Verify what your's is and what it is available for.)  Mine is an older one and cannot be used for the Scans, but can for most things.     As far as the numbing cream - It is nice to have.  Only had it once, but it should be administered about 10 minutes before the 'stick', this cuts down the patient thru-put, so it is seldom done.  It is similiar to a shot.  Pain goes away fast.  Excession area was tender for about two days.  Been no problem for many years now.  I get it flushed every 3 to six months.  Yeah, I was told it should be done every 30 days when it was iinstalled.  Hasn't been done more than quarterly in 5 years.  Sometimes is 6 months apart (depends on what I'm doing.  Mine has not been blocked, even at the 6 month times.

I'm me, not a statistic. Praying to not be one for years yet.