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Physical restrictions with a chest port?

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

What can’t you do with a chest port?

NewHere's picture
NewHere
Posts: 1171
Joined: Feb 2015

I think you are suppossed to avoid lifting more than 10 pounds though for the first 6 weeks to let it fully heal. 

But other than that, I have had no limitations whatsoever, was told whatever I feel like doing.  I am guessing there may be some limits, but I haved crawled into wrecked cars to help get people out, move them up and down stairs, carry 20 pounds of camera gear running around shooting sports, do pushups etc.  Can even go scuba diving with it, though I have not yet had a chance to get back in the water since this all started.

Once in awhile I still feel it (so I think) when I stretch. The worst is actually if I have an itch and do not think about it and scratch it.  Been close to three years in me, and it sort of feels strange and/or it stings when I do that.

Mikenh's picture
Mikenh
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Joined: Oct 2017

Wow, another six-week reset. I don't know if I can handle that. The stuff I bring to and from work is 20-30 pounds.

I guess I won't be able to do shoulder presses, chest presses and lat pulldowns.

NewHere's picture
NewHere
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The one thing is healing and limits.  Like most things in this all, there may be variances between times and limits for healing and weights.  But that is the one thing to check.  My port is almost three years old, so the time could be different, but for some reason 6 weeks and 10 pounds sound about right.  Those exercises should be fine though after.  

abita's picture
abita
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Joined: Dec 2017

You still have your chemo port after 3 years? I thought they would take it out when the infusions are finished. I hate my chemo port. 

NewHere's picture
NewHere
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Joined: Feb 2015

My initial oncologist was not quick to remove it, and there were some iffy things still on my scans from the beginning.  Since then with the surgery for the lung met, the probable prostate since the beginning it seemed that it would be used again.  The model I have is good for 5 years.  My new goal - be around long enough so they have to replace it :)

abita's picture
abita
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I hope you will be and that I will be here for you to tell me about it! I am also stage 4, with liver mets.

NewHere's picture
NewHere
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Joined: Feb 2015

I am a New Yawker going to MSK.  At the five year mark, I should get a small place for a party for the other New Yawkers on the board :)  (Saw you mention Manhattan)

abita's picture
abita
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How is MSK? I was going to get a second opinion there. But hesitated because my surgeon fills me with such confidence. And then, I met my oncologist, and it was absolutely clear to me that he was someone I could trust completely. I am at Mount Sinai West. I am very happy with everyone there. They have so much compassion and they all seem to genuinely care about my recovery.

Mikenh's picture
Mikenh
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Joined: Oct 2017

You’re certainly helping their 5 year rates. I’m glad that you have such excellent care.

Trubrit's picture
Trubrit
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I think its just a matter of taking care of it these first seeral weeks, until it heals and sits in place.  I got allot of scar tissue around mine, because I wasn't careful enough. It didn't cause problems during treatment, but the surgeon really had to work hard at getting it out, when it was removed. So be good now, OK.

Like New, I did anything and everything when it was in there - well, not when it is accessed, then you have to be careful not to dislodge the needle, which is huge, by the way. Just warning you. I nearly fainted when I first saw the needle, but with the right preparation, ie. Lidocaine gel, you feel very little.

I can post a pic of the needle if you want (now you have taught me how). I always think its best to be forewarned. 

Tru

abita's picture
abita
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I don't look at the needle when the nurse hooks me up, or when they take it out. 

RichieTheK
Posts: 13
Joined: Aug 2017

The nurses who access my port specifically tell me to turn away because they are concerned about any bacteria in my breath contaminating the needle during the insertion. 

abita's picture
abita
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Mine said the same. But I wouldn't look regardless.

NewHere's picture
NewHere
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There were a couple of times I caught the tubing on a chair or something when walking around.  "S--t, stop I am about to pull this out of my chest and start bleeding."  For some reason it also made me laugh when the initial shock stopped.  The weirder part was walking around in the summer wiith bulkier clothers so the capsule was not sticking out too much.

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

This just gets better and better.

Okay, so there's the port in your chest and a big scary needle. Does the port in your chest have a big, scary needle as part of the port or is the big, scary needle put into the port when you have the infusion done? Out of morbid curiouslty, how long is the needle? So everyone else has this experience as well?

Trubrit's picture
Trubrit
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So the port looks like a bump under the skin.  Your Onc nurse will prep the area, keeping it sterile, and then the needle will puncture the skin and go into the port.  Sounds awful, but if done properly, you feel nothing more than pressure and maybe a pin prick. 

After that, they will cover the area with a BIG bandaid with the tube running from the port and then they will first flush the port with a saline solution. The fumes come up into your mouth and taste funny, but it doesn't last more than a minute. After the flush, they will hook you up to your chemo bags. 

I actually had a video taken on one of my chemo visits. Fun to look BACK on. 

Tru

 

 

NewHere's picture
NewHere
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Joined: Feb 2015

Needle sits pretty much flush on the chest.  The tubing and capsule are a bit more annoying.  Just trying to postiion it.  I slept on couches with my left side down, right side up, chemo pump on hip.  So three days a bit awkward sleeping, showering/sponge bathing.  The tubing can get caught on things if you act dumb like I did, running around a baseball stadium and forgetting things can get caught.  You feel the needle for a couple of seconds.  And after I was done with chemo, I would often forget the cream when getting accessed and it was not bad.

The key is breathing in deeply and holding breath.  It may be because I have people who access ports all the time, so they are really good at it (much like paramedics are great at line because they are used to doing them in moving ambulances.)  

The bandage removal is the worst (not bad), you get a waxing :) 

I know it sounds weird, but I looked at it as something positive as much as possible.  Something like "Screw this, I am allowed to indulge myself, chill out, sleep, watch TV and be a slug for a couple of days, I am entitled.  I am on chemo."  

Trubrit's picture
Trubrit
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The picture has run its course. :)

 

Mikenh's picture
Mikenh
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I told my wife that a lady posted a picture of her chest for me on a forum.

Trubrit's picture
Trubrit
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Don't let this put you off. 

Pins and needles

airborne72's picture
airborne72
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Mike:  You can do this.  I was fortunate to have my port installed while I was under for the resection.  So during my recovery I was moving slow due to my resection but the port benefited from it as well.  No problems.  But I will add to the list of what you can't do, or can't do well: shoot a shotgun.

I have now been infused three times.  What Tru described above is what I have been experiencing.  The only discomfort I feel with my port and needles is when it's time to disconnect and then pull that large piece of tape off your chest.  The needle is not an issue.

It will take you awhile to remember your pump-bag is part of you when you first leave the oncology clinic.  But after a few near misses (pulls) you will learn that lesson.  Again, referring to what Tru mentioned above about dislodging the needle. 

One more thing Mike, they will issue you a small hazardous materials spill clean up kit to take home with you.  If the system fails and you spring a leak then you are supposed to use universal caution with the leakage.  Chemo is not something that you want to get on you, just in you.

Jim

abita's picture
abita
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I didn't get a clean up kit. I did ask what i do because I have cats and don't want them hurt. And yes, it is kind of funny how easy it is to forget you are attached to the bag. 

aoccc2015
Posts: 37
Joined: Sep 2017

Oh man my powerport sticks out like crazy lol...but i do all the things i used to do (lifting 40 lbs max over and over) and don't notice anything. Even with it connected to the pump i do whatever.Ive taken my pump out everytime for a year, its easy the bandage is the worst part.

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

Thanks for the graphic (and graphics) view of chest ports. I will be on Xeloda so I will only go to the infusion center for Oxyliplatin so I assume that they will put the needle in and take it out and that I won't have to deal with much of anything outside of keeping things clean or covered in-between infusions. If I had known everything that I was going to eventually go through, I'd have had a lot more anxiety along the way.

Trubrit's picture
Trubrit
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Joined: Jan 2013

You won't need to do anything to your port area inbetween visits. The skin heals over straight after the needle is removed - just like getting an IV - And just as long as you take a shower or have a bath, then there is no more to be done but forget its there. 

I'm glad you won't have the 5FU pump. Like Jim, I took off with the bag sitting on the couch, and it was not comfortable. Luckily, I did not dislodge the needle. 

Oxaliplatin nfusion time can be up to three, four hours. Most of the time you will be sitting back in a comfortable chair. I only ever got up to go to the loo. Take a good book. Good music. Blanket. Laptop. Whatever it takes to keep you occupied for that amount of time. 

I would say 'how exciting', but alas, no. But you will do well. I feel it in my bones. 

Tru

Mikenh's picture
Mikenh
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Joined: Oct 2017

I was hoping to work during infusions but I'll have to see the setup in the infusion room. I do have Campbell's Biology to get through and a Chemistry book as well. But I don't know how well I'll be able to concentrate.

abita's picture
abita
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Joined: Dec 2017

What are you studying? My hospital's infusion suite has the recliner for patient, a visitor's chair, a tv suspended from ceiling. The recliner has a small table attached to arm. There are crackers and fruit in the hall for those who need it. I would say bring a water bottle. They have water, but getting up, mixing hot first so room temperature, is a pain.

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

I'd like to self-study a masters in cancer biology but I'd need to cover a bunch of undergrad stuff first. Fortunately I find the undergrad stuff pretty easy so far. The main problem with the textbooks is their weight. I'd love to have an iPad version but we already have the textbooks. The water bottle sounds like a good idea. What do you recommend for size? I have 16 ounce and 32 ounce bottles.

abita's picture
abita
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Joined: Dec 2017

You can bring the 16 ounce, then refill it if you need more. I am going to bring the water bottle so I get enough water the whole day. The nutritionist did tell me to drink 10 cups a day. Which is a lot. I read somewhere this week that it is important to drink a lot of water to help your kidneys process out all the toxins in the chemo. I don't know if that is true. But sounds logical. I would bring a snack, just in case. Bad enough day, don't want to be hangry at the same time.

Do you have any links to info on how the chemo is able to target the fast reproducing cells? I am very interested to know how it knows how it does that. My degree is in computer science, so I did not have many of the types of classes that you will need for your degree. Good luck! I knew so little before that I didn't even know that the spread meant I was stage 4 or even what stage 4 meant. I didn't even know that the cancers were different types. I just thought that all the same, just in different parts of the body. 

Mikenh's picture
Mikenh
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I have an MSCS and a BA CIT so my background isn't in bio and chem but undergrad courses should be pretty easy if you've been in the working world and already have a STEM degree. My son works in cancer pathology so he can read and translate papers for me. I don't know how 5FU and Oxyliplatin work. I do know a little about immunotherapy.

Mikenh's picture
Mikenh
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Joined: Oct 2017

The diagram of cell growth/death is helpful in understanding how complex regulation is in the body. It is similar to very complex software systems where you pass complicated data structures from module to module or subsystem to subsystem. In this case, mutations cause the system to go awry. Mutations are like data corruption in memory.

abita's picture
abita
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That description helps.

abita's picture
abita
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My total time in chair is 4 1/2 hours. The vitals and exam about 45 minutes. That includes all the drips though, not just the oxiplatin. My coworkers are so thoughtful, that they have a sign up to be with me during infusions. I don't have the heart to tell them that I wish they weren't there the entire time. I have trouble sleeping the night before, so really could use a nap during the infusion. My oncologist got donations to fund activities for the patients being infused. Someone gives hand and feet massages, there is art, there is someone that helps make jewelry, a dance demo, that kind of thing. I love my oncologist. He and my surgeon are the reason I have a positive attitude, mostly. I, of course, have my not so good moments too.  Oh, of course, each chair has a TV.

Trubrit's picture
Trubrit
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Thats quite the set up. I just had a chair in a cubicle. Quite sparse. 

Tru

abita's picture
abita
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I am in Manhattan, so maybe being a bigger hospital is why. That is probably also why they have the nutrionist that comes to the new patients to work out an eating plan. The hospital is being renovated, so Monday my infusion is on a different floor in the new infusion suite. The activities are all because my oncologist really believes that these help distract the patients and keep their spirits up. He and a former patient of his got donations to fund it.

lizard44's picture
lizard44
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You had a cubicle? We have recliners in a big room, all open- well I'm in a smaller area now, at the far end,  close to the restroom because  when I need to get there after being pumped full of fluids for three or four hours, I need to get there quickly. It's actually nice and warm in my little spot because I'm right next to the  big cabinet that heats the blankets. One nice amenity is that we have great Wifi :-)

 Grace/lizard44

lizard44's picture
lizard44
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My port sticks way out because I'm so thin. The nurse told me that they use longer needles when the port is deeper under the surface. They use a short needle on me. You should ask your doc about limitations. I'm on my second port because a fibrin sheaf formed around the first one. They couldn't draw blood and I had pain when they began an infusion.

If you do pull the needle out close the clamp right away to stop any additional leakage.

Grace/ lizard44

Mikenh's picture
Mikenh
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Joined: Oct 2017

One more question: do you folks drive there and back?

abita's picture
abita
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I take a car service. I don't have a car. I may take the subway there, but will definitely take a car service home and when going back for the disconnect. 

Lily Flower's picture
Lily Flower
Posts: 253
Joined: Jul 2017

Mike,

My Oxy IV drip last about an hour and a half and between that and blood test and seeing my oncologist, the whole treatment usually last about 2 hours. My clinic setup is exactly the same as abita's. Maybe it's a NY thing? Lol. Every nurse at my clinic have their own sections. Once you have your favorite nurse you can just go to his/her section and be seated. My favorite nurse at my clinic is Jane and she always compliments me. She has a great bedside manner. 

I would say to either have someone pick you up or take a cab on your first treatment. I always feel drowsy afterwards so I don't dare to drive. I usually have a friend that takes me there and another friend picks me up. If no one's avaialbe I would call a cab home. 

As far as getting your work done, unless you can type with one hand but it'll be hard because the arm you're getting poked with the needle needs to be straight. If you bend it the wrong way the drip would get blocked and the machine would go off. It's a great time to read a book or play on your iPad whichever you prefer. Somehow I can't post any pics (Something about the pop up block which I have no idea). I do have my hooked up arm pic posted on my FB, Maybe Tru can repost here. 

You can bring a small bottle of water but they have water bottle to offer you at the clinic to take an anti-nausea pill before the drip starts. I get a bag of saline drip along with the Oxy so my bladder fills up quick. I have to go to the bathroom at least once during the drip. The nurse will disconnect you and reconnect you back when you return. 

At my clinic there's a heating pad at the recliner chair. Keep it on your arm. It help lessen the pain you might feel. Also make sure you wash your hands with warm water after going to the bathroom. You will feel the stinging right away from cold water. Funny thing is my clinic only has cold water in the bathroom. Go figure! 

Stupid me. I just noticed you'll be getting the chest port, not the IV drip like mine. reading all these comments about the port makes me feel even more of a wimp. 

abita's picture
abita
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A trick I learned, turn the hot water on when you get in the bathroom, so it warms up by the time you wash your hands. Lily, when you say arm, does that mean you don't have a chemoport? If you have the chemoport, both hands are free.

My treatment is longer than yours, and a bit different. Maybe because mine spread to liver. And I am anemic. I get the saline too. I get an anti nausea drip that covers 3 days, a steroid drip to avoid allergic reactions, an iron drip, then get saline, get a 30 minute break (I forgot why, but there is a reason), then get the leucoverin and oxiplatin at the same time (takes 2 hours), and then get 20 minutes of the 5fu. Then get hooked up to the take home device with the rest of the 5fu infusion. I feel like there is one other drip I get, but I can't remember. I usually only get 4 or so hours sleep the night before, so always a little foggy headed. The other chairs get a second person in them while I am there, so I think mine is on the longish side. Again, guessing because of the spread.

We don't get water bottles. We get a cooler with plastic cups. When I go to the bathroom, I unplug the IV machine and take it with me. I got very good at that when I was in the hospital for weeks. Smile Nice that you get a heating pad. We get those blankets they keep in the warmer. Those are pretty awesome too though. 

I am not drowsy when I leave. Probably the steroid. But I definitely would not feel like driving. I barely feel like getting to the car.

 

Also, if you are going to get a steroid, and are going to be there a while, bring a snack. The steroid makes me really hungry.

Lily Flower's picture
Lily Flower
Posts: 253
Joined: Jul 2017

Abita, I'm such a dork! After I wrote up my comment to Mike, then I realized he's getting the chest port which I reedited my comment. LOL!!! My clinic doesn't have hot water. You would think a clinic like that should have it. I would wash it really quick and just suck it up. Ugh! They do provide blankets as well. I'm usually good without the blanket. I do bring snacks with me to munch on as I do get hungry. 

abita's picture
abita
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Joined: Dec 2017

No hot water in the bathroom, crazy! I am at a hospital, not a clinic. But still, the clinic should know to have hot water! I can always tell when a fellow patient is colon cancer because they mix hot and cold water to get room temp for drinking :) I feel bad for you, washing my hands in cold water stings so bad.

abita's picture
abita
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Joined: Dec 2017

Um, no. I feel bad for you with the IVs. I dread those. I got like 8 or so when I was in the hospital, plus bloodwork every morning. Those needles suck!. Both have their pitfalls. 

Lily Flower's picture
Lily Flower
Posts: 253
Joined: Jul 2017

Aww it's ok. I'm actually good with the IV. Gpetting poked with the needle really depends on the nurse. I never feel any pain when my nurse (Jane) insert the needle in me. Maybe she has a steady hand and goes directly into my vein (?). 

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

I got used to them in the hospital after two days. Having to stick yourself for three weeks will also get you desensitized to needles. 

 

Though i I still hate them.

Annabelle41415's picture
Annabelle41415
Posts: 6379
Joined: Feb 2009

Every doctor puts limits differently.  The first couple of weeks it should heal but you should be able to do almost everything with it except putting it in direct contact with impact of any kind.  If you accidentily hit it or smash the port it could cause problems.  Mine always hurt when hugging someone.  But I'm a hugger so my putting up with a hug was well worth it - just didn't do it to hard Wink.  Check with the doctor on weight limit, but I'm not sure my doctor gave me one.

Kim

RichieTheK
Posts: 13
Joined: Aug 2017

I avoid problems with snagging the line to the 5-FU pump by taping the connector to my side with medical tape. This acts as a strain relief so that I won't pull on the port if I should snag the line on something.

 

Tunadog's picture
Tunadog
Posts: 235
Joined: Mar 2017

I had the nurse Spray on a topical anesthetic before inserting the needle.

A friend of my son who has passed on due to lung cancer gave me the tip.

Worked for me.

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

The port is in. The procedure was mostly painless, quick and I was awake during the procedure but not far from sleep. Antibiotics for three days. I have to avoid getting water on the port. Some people cover the port with Saran Wrap while showering. No immersion and I will probably have to give up competitive tennis for six months. I should avoid bench press, pullups, lat pulldowns and stuff involving the upper chest. I'm running out of body parts to exercise.

Mail-order pharmacy called back and the Xeloda should arrive on Monday which is a relief.

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