› Forums › General Melanoma Community › Getting a port… thoughts? The Good, Bad and Ugly?
- This topic has 63 replies, 10 voices, and was last updated 8 years, 5 months ago by
jvictoria.
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- November 4, 2015 at 4:12 pm
Stage IIIB, full lymph node dissection righ arm. Recently began clinical trial BMS-238 which will require infusions on an almost weekly basis. Since I can only have infusions on my right arm I was considering getting a port to help with the amount of times I need to get stuck every week and hopefully save my veins from eventual collapse.
Anyone have experience… pros/cons they can share? What kind of ports are out there, etc? What linitations will I have (sports, etc.)…
Thanks!
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- November 4, 2015 at 5:35 pm
With that many sticks I would think you need a port. Probably a power port so you can use it for not only the med but ct and MRI scans and blood draws too.
Artie
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- November 5, 2015 at 6:02 pm
Sounds odd but I never got a port. Was going to last winter but had too many choking issues so it got cancelled . Never got around to it since.
For me the blood draw is easy. Just a few seconds and seems to heal in 3 weeks.
The iv for the meds though can be awful. I've been stuck 4 times before they finally get the iv. Sometimes they get it in the first try. Even then it can hurt for several days. I would recommend the port from what I've heard everyone say. But it really hits home seeing that in the mirror every day I would think. I try to block things out as much as I can so I'm not sure I could handle seeing that. Knowing me I would probably try to claw it out in my sleep. But that might just be me.
Artie
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- November 5, 2015 at 6:02 pm
Sounds odd but I never got a port. Was going to last winter but had too many choking issues so it got cancelled . Never got around to it since.
For me the blood draw is easy. Just a few seconds and seems to heal in 3 weeks.
The iv for the meds though can be awful. I've been stuck 4 times before they finally get the iv. Sometimes they get it in the first try. Even then it can hurt for several days. I would recommend the port from what I've heard everyone say. But it really hits home seeing that in the mirror every day I would think. I try to block things out as much as I can so I'm not sure I could handle seeing that. Knowing me I would probably try to claw it out in my sleep. But that might just be me.
Artie
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- November 5, 2015 at 6:02 pm
Sounds odd but I never got a port. Was going to last winter but had too many choking issues so it got cancelled . Never got around to it since.
For me the blood draw is easy. Just a few seconds and seems to heal in 3 weeks.
The iv for the meds though can be awful. I've been stuck 4 times before they finally get the iv. Sometimes they get it in the first try. Even then it can hurt for several days. I would recommend the port from what I've heard everyone say. But it really hits home seeing that in the mirror every day I would think. I try to block things out as much as I can so I'm not sure I could handle seeing that. Knowing me I would probably try to claw it out in my sleep. But that might just be me.
Artie
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- November 5, 2015 at 10:25 pm
Thanks Artie… I think the visuals will freak me out as well and potentially not being able to do the things I love; mountain biking – risk of tearing it out in a crash. Hiking – backpack straps would sit on it., etc.
Cancer Sucks – it's taken so much away; mostly my serenity. But, I'm thankfull for my medical team and the fact that it could have been much worse… I'm still living my day to day life.
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- November 5, 2015 at 10:25 pm
Thanks Artie… I think the visuals will freak me out as well and potentially not being able to do the things I love; mountain biking – risk of tearing it out in a crash. Hiking – backpack straps would sit on it., etc.
Cancer Sucks – it's taken so much away; mostly my serenity. But, I'm thankfull for my medical team and the fact that it could have been much worse… I'm still living my day to day life.
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- November 5, 2015 at 10:25 pm
Thanks Artie… I think the visuals will freak me out as well and potentially not being able to do the things I love; mountain biking – risk of tearing it out in a crash. Hiking – backpack straps would sit on it., etc.
Cancer Sucks – it's taken so much away; mostly my serenity. But, I'm thankfull for my medical team and the fact that it could have been much worse… I'm still living my day to day life.
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- November 4, 2015 at 5:35 pm
With that many sticks I would think you need a port. Probably a power port so you can use it for not only the med but ct and MRI scans and blood draws too.
Artie
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- November 4, 2015 at 5:35 pm
With that many sticks I would think you need a port. Probably a power port so you can use it for not only the med but ct and MRI scans and blood draws too.
Artie
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- November 4, 2015 at 7:01 pm
No question, go for the port. I had one for 2 1/2 years for the ippilumumab/nivolumab trial and it was fantastic having the port. The only sports you would have to avoid would be contact ones like football and rugby.
Save the vein.
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- November 4, 2015 at 7:26 pm
I haven't had a chance to "use" my port yet, but I am glad it's there. I am a "hard stick" and have only one arm that can be used for IVs now, so the port is going to save me a lot of pain. My doctor also prescribed a lidocaine cream to apply before a treatment to numb the area before the stick. It will also be used for the contrast dye during scans, so I think it is well worth the outpatient procedure to have it put in.
Hope this helps!
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- November 4, 2015 at 7:26 pm
I haven't had a chance to "use" my port yet, but I am glad it's there. I am a "hard stick" and have only one arm that can be used for IVs now, so the port is going to save me a lot of pain. My doctor also prescribed a lidocaine cream to apply before a treatment to numb the area before the stick. It will also be used for the contrast dye during scans, so I think it is well worth the outpatient procedure to have it put in.
Hope this helps!
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- November 4, 2015 at 7:26 pm
I haven't had a chance to "use" my port yet, but I am glad it's there. I am a "hard stick" and have only one arm that can be used for IVs now, so the port is going to save me a lot of pain. My doctor also prescribed a lidocaine cream to apply before a treatment to numb the area before the stick. It will also be used for the contrast dye during scans, so I think it is well worth the outpatient procedure to have it put in.
Hope this helps!
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- November 4, 2015 at 7:44 pm
Juan,
I am on the same trial as you IPI/NIVO. I went about 6 infusions trying not to get a port and I could not take all the sticks. 3 weeks ago I did have a power port installed in my chest. The port install was easy in my hospital radiology dept. and now getting the infusions have been much easier for me as well for all the blood they need to draw from you. It will also work well with the CT scans.
On a side note how did you get on the trial? BMS closed it out the day I started. I think I was the last one to get on the trial. I would like to compare notes with you on what they charge to your insurance and what is charged to research.
Tom
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- November 4, 2015 at 8:35 pm
Hi Tom,
I think I may have actually been the last to start, not necessarily the last to get in. My start was delayed due to testing issues for the PD-L1 biomarker… feel free to email me [email protected]
Best,
Juan
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- November 4, 2015 at 8:35 pm
Hi Tom,
I think I may have actually been the last to start, not necessarily the last to get in. My start was delayed due to testing issues for the PD-L1 biomarker… feel free to email me [email protected]
Best,
Juan
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- November 4, 2015 at 8:36 pm
sorry – [email protected]
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- November 4, 2015 at 8:36 pm
sorry – [email protected]
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- November 4, 2015 at 8:36 pm
sorry – [email protected]
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- November 4, 2015 at 8:35 pm
Hi Tom,
I think I may have actually been the last to start, not necessarily the last to get in. My start was delayed due to testing issues for the PD-L1 biomarker… feel free to email me [email protected]
Best,
Juan
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- November 4, 2015 at 7:44 pm
Juan,
I am on the same trial as you IPI/NIVO. I went about 6 infusions trying not to get a port and I could not take all the sticks. 3 weeks ago I did have a power port installed in my chest. The port install was easy in my hospital radiology dept. and now getting the infusions have been much easier for me as well for all the blood they need to draw from you. It will also work well with the CT scans.
On a side note how did you get on the trial? BMS closed it out the day I started. I think I was the last one to get on the trial. I would like to compare notes with you on what they charge to your insurance and what is charged to research.
Tom
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- November 4, 2015 at 7:44 pm
Juan,
I am on the same trial as you IPI/NIVO. I went about 6 infusions trying not to get a port and I could not take all the sticks. 3 weeks ago I did have a power port installed in my chest. The port install was easy in my hospital radiology dept. and now getting the infusions have been much easier for me as well for all the blood they need to draw from you. It will also work well with the CT scans.
On a side note how did you get on the trial? BMS closed it out the day I started. I think I was the last one to get on the trial. I would like to compare notes with you on what they charge to your insurance and what is charged to research.
Tom
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- November 4, 2015 at 8:37 pm
Thanks for all the support everyone… It's amazing to get such great feedback!
Juan
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- November 4, 2015 at 9:09 pm
I had a powerport installed one year ago, but the flow in it was not enough for CT or MR. So it,s only used having the infusion of Keytruda. Am a little disappointed avout that.
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- November 4, 2015 at 9:09 pm
I had a powerport installed one year ago, but the flow in it was not enough for CT or MR. So it,s only used having the infusion of Keytruda. Am a little disappointed avout that.
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- November 4, 2015 at 9:09 pm
I had a powerport installed one year ago, but the flow in it was not enough for CT or MR. So it,s only used having the infusion of Keytruda. Am a little disappointed avout that.
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- November 5, 2015 at 3:41 pm
No one had mentioned a port to me until my fourth infusion of Keytruda, when the nurses at the infusion center said "We can't keep using this same vein, and we only have the one arm to work with." I had it done three weeks ago, and had my first infusion with it the day after the procedure. That was a little uncomfortable because of the fresh wound, but once the needle was in, I decided right away that I liked it. I go for infusion #6 this afternoon. This time I have the lidocaine creme to rub on before I go, so I'm expecting this one to be easy as pie. 🙂
-Bill
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- November 5, 2015 at 3:41 pm
No one had mentioned a port to me until my fourth infusion of Keytruda, when the nurses at the infusion center said "We can't keep using this same vein, and we only have the one arm to work with." I had it done three weeks ago, and had my first infusion with it the day after the procedure. That was a little uncomfortable because of the fresh wound, but once the needle was in, I decided right away that I liked it. I go for infusion #6 this afternoon. This time I have the lidocaine creme to rub on before I go, so I'm expecting this one to be easy as pie. 🙂
-Bill
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- November 5, 2015 at 10:29 pm
Brian,
Thanks for the comment… I need to get clarity on that. My doctor made the comment, I think it may be my particular trial.
Seperatly, how was the port for you on a day to day basis. Did you ever worry about it getting disconnected? I do alot of mountain biking and I'm terrified that it might get disconnected if I crash.
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- November 5, 2015 at 11:52 pm
Juan, there was a study done, small one at the Ottawa General, where they found an increase risk of blood clots in those people that were physically active ie. lifting weights and having a pick or port. I have been getting treatments every two weeks on BMS checkmate 69 with no port or pick line. I ask for the nurse that was on the IV team for 8 years (Lise), she never misses. Wishing you the best!!! Ed
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- November 5, 2015 at 11:52 pm
Juan, there was a study done, small one at the Ottawa General, where they found an increase risk of blood clots in those people that were physically active ie. lifting weights and having a pick or port. I have been getting treatments every two weeks on BMS checkmate 69 with no port or pick line. I ask for the nurse that was on the IV team for 8 years (Lise), she never misses. Wishing you the best!!! Ed
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- November 5, 2015 at 11:52 pm
Juan, there was a study done, small one at the Ottawa General, where they found an increase risk of blood clots in those people that were physically active ie. lifting weights and having a pick or port. I have been getting treatments every two weeks on BMS checkmate 69 with no port or pick line. I ask for the nurse that was on the IV team for 8 years (Lise), she never misses. Wishing you the best!!! Ed
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- November 6, 2015 at 5:06 pm
Juan,
Never worried about it getting disconnected. Not sure if you are aware of this or not but the port is actually installed under your skin. Something pretty tramatic would have to happen for it to get disconnected.
Mine really hasn't bothered me much at all. I'm fairly active (run, bike, swim, surf, etc…). Other than wrestling my 5 year old son I don't participate in any contact sports so my port hasn't been an issue at all for me. I know broken collar bones is a not so uncommon mishap with mountain bikers so with a port you'd probably want to exercise a little more caution on the bike but I wouldn't stop all together just because I had a port. Probably back packing would also be a little bit of an inconvenience. I don't do any heavy back packing but I occasionally wear a back pack and it does put pressure on the port. Doesn't hurt it just isn't comfortable.
The way my port is installed (and I think everyone is the same) the port is below the collarbone. From the port there is a line that goes up and over the collarbone and then down into some artery (Celeste probably knows the technical term). The only thing that is an occasional inconvenience is the line that goes over the collarbone rubs on my shirts and will get itchy. I know, if that's my biggest complaint I'm doing pretty well.
My decision to get a port was pretty much a no brainer because the one arm I could get drawn on was really becoming problematic. If it hadn't been a problem not sure what I would do. The port is awfully nice and don't think you would regret it but I know it's still not an easy decision.
Brian
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- November 6, 2015 at 5:06 pm
Juan,
Never worried about it getting disconnected. Not sure if you are aware of this or not but the port is actually installed under your skin. Something pretty tramatic would have to happen for it to get disconnected.
Mine really hasn't bothered me much at all. I'm fairly active (run, bike, swim, surf, etc…). Other than wrestling my 5 year old son I don't participate in any contact sports so my port hasn't been an issue at all for me. I know broken collar bones is a not so uncommon mishap with mountain bikers so with a port you'd probably want to exercise a little more caution on the bike but I wouldn't stop all together just because I had a port. Probably back packing would also be a little bit of an inconvenience. I don't do any heavy back packing but I occasionally wear a back pack and it does put pressure on the port. Doesn't hurt it just isn't comfortable.
The way my port is installed (and I think everyone is the same) the port is below the collarbone. From the port there is a line that goes up and over the collarbone and then down into some artery (Celeste probably knows the technical term). The only thing that is an occasional inconvenience is the line that goes over the collarbone rubs on my shirts and will get itchy. I know, if that's my biggest complaint I'm doing pretty well.
My decision to get a port was pretty much a no brainer because the one arm I could get drawn on was really becoming problematic. If it hadn't been a problem not sure what I would do. The port is awfully nice and don't think you would regret it but I know it's still not an easy decision.
Brian
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- November 6, 2015 at 5:06 pm
Juan,
Never worried about it getting disconnected. Not sure if you are aware of this or not but the port is actually installed under your skin. Something pretty tramatic would have to happen for it to get disconnected.
Mine really hasn't bothered me much at all. I'm fairly active (run, bike, swim, surf, etc…). Other than wrestling my 5 year old son I don't participate in any contact sports so my port hasn't been an issue at all for me. I know broken collar bones is a not so uncommon mishap with mountain bikers so with a port you'd probably want to exercise a little more caution on the bike but I wouldn't stop all together just because I had a port. Probably back packing would also be a little bit of an inconvenience. I don't do any heavy back packing but I occasionally wear a back pack and it does put pressure on the port. Doesn't hurt it just isn't comfortable.
The way my port is installed (and I think everyone is the same) the port is below the collarbone. From the port there is a line that goes up and over the collarbone and then down into some artery (Celeste probably knows the technical term). The only thing that is an occasional inconvenience is the line that goes over the collarbone rubs on my shirts and will get itchy. I know, if that's my biggest complaint I'm doing pretty well.
My decision to get a port was pretty much a no brainer because the one arm I could get drawn on was really becoming problematic. If it hadn't been a problem not sure what I would do. The port is awfully nice and don't think you would regret it but I know it's still not an easy decision.
Brian
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- November 5, 2015 at 10:29 pm
Brian,
Thanks for the comment… I need to get clarity on that. My doctor made the comment, I think it may be my particular trial.
Seperatly, how was the port for you on a day to day basis. Did you ever worry about it getting disconnected? I do alot of mountain biking and I'm terrified that it might get disconnected if I crash.
-
- November 5, 2015 at 10:29 pm
Brian,
Thanks for the comment… I need to get clarity on that. My doctor made the comment, I think it may be my particular trial.
Seperatly, how was the port for you on a day to day basis. Did you ever worry about it getting disconnected? I do alot of mountain biking and I'm terrified that it might get disconnected if I crash.
-
- November 5, 2015 at 3:41 pm
No one had mentioned a port to me until my fourth infusion of Keytruda, when the nurses at the infusion center said "We can't keep using this same vein, and we only have the one arm to work with." I had it done three weeks ago, and had my first infusion with it the day after the procedure. That was a little uncomfortable because of the fresh wound, but once the needle was in, I decided right away that I liked it. I go for infusion #6 this afternoon. This time I have the lidocaine creme to rub on before I go, so I'm expecting this one to be easy as pie. 🙂
-Bill
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