Kevin,
thanks so much for the additional details.
Is the golf ball look like normal? Shouldn't it be flat? Like just a ridge underneath your skin vs not raised above the plane of your chest? Or is that because you have a dual port? When you look at other folks with ports can you see the catheter snaking along their collar bone as well? Is this a matter of technique of the individual doing the procedure.....? Are there benefits to having a dual vs single port?
I tell you Kevin, these visuals you are describing are creating anxiety, not good..I am inhaling and saying woooSaaaAH.. I mean I was trying to prepare myself for the 1.5 inch incision, and now I am going to have to see a catheter snaking along my collar bone every morning in the mirror?.
Yes, I know how this sounds...
Forums
Re: PICC vs. port - looking for feedback
I think how much the port shows depends on the individual, and how the port is installed. With the exercising I do, I have decent muscle tone and don't have too much fat. Consequently, before my port was installed, the doctor indicated it would probably be more noticeable because there wasn't much to hide it (plus the dual port is a bit higher and wider - though I didn't know he installed a dual port until afterward).
I've seen some people where the port is barely noticeable, and others where it sticks out much like mine. One of the first people I talked to was an avid runner, and his body was much leaner than mine, yet his was barely noticeable. I've also seen overweight people with ports that are very noticeable. That's where I think it's also a matter of how it's installed and how deep into the chest tissue it's inserted.
With respect to the catheter, I think mine is more noticeable than most people. Most times, I can't see it on others, or maybe just a bit where it goes over the collar bone. Mine is noticeable the entire distance from the port to the collar bone. I'm also not sure if it always goes over the collar bone - this may depend on which vein they decide to access.
The only benefit I've heard for the dual port is that it's useful in CAT and PET scans where they may use both ports as part of the procedure - perhaps for dyes or similar drugs that get tracked through your system? I've never had a CAT or PET, so I'm not personally familiar with how the port is used. I was actually a bit ticked when I learned I had the dual port since in my case there seemed to be no reason for it. I suppose if one side fails, I still have the benefit of using the other without having to get a new port.
Sorry if this is causing anxiety. WIth the way your arms are reacting to the IVs, I think a port may be your best option if you'll be continuing to receive infusions for a while yet. If they knock you out completely for the surgery, I would expect the only issues you'll have are those you create for yourself. As another reference point, I found the two bone marrow biopsies I went through to be far worse experiences (and I get to go through another one this Wednesday).
I've seen some people where the port is barely noticeable, and others where it sticks out much like mine. One of the first people I talked to was an avid runner, and his body was much leaner than mine, yet his was barely noticeable. I've also seen overweight people with ports that are very noticeable. That's where I think it's also a matter of how it's installed and how deep into the chest tissue it's inserted.
With respect to the catheter, I think mine is more noticeable than most people. Most times, I can't see it on others, or maybe just a bit where it goes over the collar bone. Mine is noticeable the entire distance from the port to the collar bone. I'm also not sure if it always goes over the collar bone - this may depend on which vein they decide to access.
The only benefit I've heard for the dual port is that it's useful in CAT and PET scans where they may use both ports as part of the procedure - perhaps for dyes or similar drugs that get tracked through your system? I've never had a CAT or PET, so I'm not personally familiar with how the port is used. I was actually a bit ticked when I learned I had the dual port since in my case there seemed to be no reason for it. I suppose if one side fails, I still have the benefit of using the other without having to get a new port.
Sorry if this is causing anxiety. WIth the way your arms are reacting to the IVs, I think a port may be your best option if you'll be continuing to receive infusions for a while yet. If they knock you out completely for the surgery, I would expect the only issues you'll have are those you create for yourself. As another reference point, I found the two bone marrow biopsies I went through to be far worse experiences (and I get to go through another one this Wednesday).
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Kevin J - Name: Kevin J
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Jan 2011
- Age at diagnosis: 52
Re: PICC vs. port - looking for feedback
Hi Kevin!!
Thanks so much for your patience and continued feedback, it has been very helpful.
I have had 3 BM's now. Each one was better than the first. Obviously the 2nd one was the worse since I not only knew what was coming and had far more realistic terror than the imaginative one that spiraled me into hysteria for the first. The 2nd and 3rd BM actually were not that bad at all. I did not have any pain meds for the 2nd and 3rd, but the individual who performed them was exceptional in terms of technique and that made it far better.
However, if a BM was not part of the protocol for a trial I agreed to participate in (as you&I have) would decline to do any more BM's. They really are very imprecise not to mention unpleasant to have done. I would only get FLC assays done as they are far more precise and predictive of what is going on with multiple myeloma. Unfortunately, they are not standard of care yet, so trial protocols continue to use BM.
Based on your feedback the port procedure itself won't take much longer than a BM, but unlike the BM a port leaves a daily reminder it's there.
Thanks again for your detailed responses...I can see the light now at the end of the port tunnel far better and that reduces a lot of my anxiety. I also know more about what questions to ask.
Additionally, like the majority of Americans, I have more than adequate adipose tissue which means it will be far easier to 'hide' the port & cath snaking around my collar bone....lol
Thanks so much for your patience and continued feedback, it has been very helpful.
I have had 3 BM's now. Each one was better than the first. Obviously the 2nd one was the worse since I not only knew what was coming and had far more realistic terror than the imaginative one that spiraled me into hysteria for the first. The 2nd and 3rd BM actually were not that bad at all. I did not have any pain meds for the 2nd and 3rd, but the individual who performed them was exceptional in terms of technique and that made it far better.
However, if a BM was not part of the protocol for a trial I agreed to participate in (as you&I have) would decline to do any more BM's. They really are very imprecise not to mention unpleasant to have done. I would only get FLC assays done as they are far more precise and predictive of what is going on with multiple myeloma. Unfortunately, they are not standard of care yet, so trial protocols continue to use BM.
Based on your feedback the port procedure itself won't take much longer than a BM, but unlike the BM a port leaves a daily reminder it's there.
Thanks again for your detailed responses...I can see the light now at the end of the port tunnel far better and that reduces a lot of my anxiety. I also know more about what questions to ask.
Additionally, like the majority of Americans, I have more than adequate adipose tissue which means it will be far easier to 'hide' the port & cath snaking around my collar bone....lol
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: PICC vs. port - looking for feedback
Hi Suzierose and All, Thanks Suzie for the compliment, but believe me, I was really nervous going thru all the stuff I did, and it took all my mental strength plus more to cope up with it. My family and friends and really my whole community helped to propel me thru it, and I am very grateful that they did!
About the port......the first time I saw one, I was up at the hospital getting my bone drip. A nice gal in a recliner across from me had one and I asked her about it. She had breast cancer that had gone to the bone and was getting a similar medication to me. She said...'here..touch it, tap it!". It was like a little miniature tambourine under her taut skin. I was too squeamish to actually touch it, but she was fine with it. Other patients I have encountered with ports had auto immune diseases, blood diseases besides myeloma, and others who need to have infusions on an ongoing, regular basis. I have met people who needed blood products, like plasma, three or four times a week, for over fifteen years! They are the 'regulars' at the clinic I attend for the aredia. My aredia has been administered over four hours (although for me they will soon be switching back to 2 hrs) So I had all the time in the world to chat with people, find out their stories, and ambulate around the place...go for coffee, etc!! So I got to learn a lot about what goes on with 'ports', but just vicariously.
About the port......the first time I saw one, I was up at the hospital getting my bone drip. A nice gal in a recliner across from me had one and I asked her about it. She had breast cancer that had gone to the bone and was getting a similar medication to me. She said...'here..touch it, tap it!". It was like a little miniature tambourine under her taut skin. I was too squeamish to actually touch it, but she was fine with it. Other patients I have encountered with ports had auto immune diseases, blood diseases besides myeloma, and others who need to have infusions on an ongoing, regular basis. I have met people who needed blood products, like plasma, three or four times a week, for over fifteen years! They are the 'regulars' at the clinic I attend for the aredia. My aredia has been administered over four hours (although for me they will soon be switching back to 2 hrs) So I had all the time in the world to chat with people, find out their stories, and ambulate around the place...go for coffee, etc!! So I got to learn a lot about what goes on with 'ports', but just vicariously.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: PICC vs. port - looking for feedback
I just had my port put in over a week ago and am doing very well with it. As you, my veins were taking a beating and I decided it was time to get the port after both my hands were stuck and the nurse was actually digging the needle in she made two tries and I told her to get someone else. The following Friday I had the port put in and they put me under heavy sedation then I was in twilight and did not even remember being out but they told me I was snoring. The actual surgery lasted about 45 minutes, they wheeled me into recovery pretty much wide awake and not in any pain.
They phoned in pain medication, and I decided I didn't want it and cancelled the Rx. I have not been in any pain at all and there was no bruising. I guess my surgeoun is pretty gentle. They make a pocket to place the port under your skin so you have a T incision. All the sutures are inside, and the incision on the outside is held together with surgical strips not stitches. Immediately after I was released from the recovery room I was wheeled up to the oncologist for my Velcade treatment with no problems. I have since had another treatment, and it wasn't bad at all, felt like a bee sting when the needle went in but only for a brief moment. It was much better than having them dig around on my hands.
They phoned in pain medication, and I decided I didn't want it and cancelled the Rx. I have not been in any pain at all and there was no bruising. I guess my surgeoun is pretty gentle. They make a pocket to place the port under your skin so you have a T incision. All the sutures are inside, and the incision on the outside is held together with surgical strips not stitches. Immediately after I was released from the recovery room I was wheeled up to the oncologist for my Velcade treatment with no problems. I have since had another treatment, and it wasn't bad at all, felt like a bee sting when the needle went in but only for a brief moment. It was much better than having them dig around on my hands.
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angie01869
Re: PICC vs. port - looking for feedback
Also forgot to tell you that I have only one port head and it doesn't stick up to far under my skin. And the line run under my collar bone is undetectable. There is no longer any tenderness and I can sleep on that side without any discomfort. My surgeon put it immediately above the small scar from having the catheter from my stem cell transplant so it is basically in the same position for the line that went into my vein underneath. She did a great job both time.
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angie01869
Re: PICC vs. port - looking for feedback
I had a double port (Hickman?) in all summer. It was OK... no real issues other than that I got a bit of an allergic reaction / infection from the bandage that keeps the entry area covered the whole time. They changed bandages and that issue went away, altho it did leave what looks to be a permanent oval scar.
By the way,you should know that ports seem to be a lot less maintenance than pics: it seemed that every time I went to the chemo clinic there was at least one person there getting their pic line cleared... never had that issue myself, nor did I notice that others were.
However, I also had Bella's problem with reverse-flow issues. I had to do the same gymnastic contortions, and they were not always successful, tho over the course of the 4 months, they generally did work, and both lines remained functional. It became a particular problem during the stem cell harvest, to the point that the technician switched the lines for in- and out-flow... she just couldn't get the one line to suck.
In any event, the port is by-and-large really quite OK... hardly the worst thing I've had to deal with in this adventure
By the way,you should know that ports seem to be a lot less maintenance than pics: it seemed that every time I went to the chemo clinic there was at least one person there getting their pic line cleared... never had that issue myself, nor did I notice that others were.
However, I also had Bella's problem with reverse-flow issues. I had to do the same gymnastic contortions, and they were not always successful, tho over the course of the 4 months, they generally did work, and both lines remained functional. It became a particular problem during the stem cell harvest, to the point that the technician switched the lines for in- and out-flow... she just couldn't get the one line to suck.
In any event, the port is by-and-large really quite OK... hardly the worst thing I've had to deal with in this adventure
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Snip - Name: John Snippe
- Who do you know with myeloma?: me
- When were you/they diagnosed?: Jan, 2011
- Age at diagnosis: 56
Re: PICC vs. port - looking for feedback
Had a Hickman line first.. yuk. Now have PortaCath and no worrying about 3 different techs trying to find a vein anymore... yay! It still surprises me, tho, how much it hurts when the techs are diving into the cath....There are "EMLO" patches (local anesthetic), but you have to pay for them...not covered. So, at $6 per patch, I hold my breath and wait til the treatment's over....
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Babs
Re: PICC vs. port - looking for feedback
Hey All!!
The Lord says, seek and you shall find, ask and you will receive. Angels are God's messengers and yesterday during infusion...I met and talked with one of his angels.
Lo and behold, as me and this fella strike up a conversation during infusion. He shared his cancer narrative and I listend. He had a rare cancer and had been through significant challenges. From not having health insurance when diagnosed to major surgery to a 3 month post-op hospitalization, where his now 8 year old son could not kiss/hug his dad . After listening for a good hour or so...we started talking about veins. His have collapsed and the surgery removed the subclavian vein (where cath snakes along collar bone) So he believed he could not get a port and has a PICC line.. A nurse while trying to access his veins asked why he did not get a port and when he explained about surgery she said why not get an arm port? He had not heard of that. He just learned yesterday, after 4 years of chemo, following his surgery that there is such a thing as an arm port!!
That's right, you can have the port placed between your elbow and shoulder vs. on your chest.
The catheter threads up the basiliac vein vs. along the subclavian prior to reaching the superior vena cava.
I was like hot-diggity!! I immediately goggled arm port on my iphone. We chatted more after the googling.
There are other folks like me who are concerned about the cosmetics and that is one of the features they promote for use of an arm port. It still has the convenience and safety (under skin) of a chest port, but less scaring. Also it is a procedure vs. surgery and local anesthestic is used vs. sedation.
Prayers answered!! as always. God is good.
I was so glad to learn there were other cancer patients who also felt that was just one more thing they did not want to give up to cancer.
wooHOOOoooo!!...sweetheart necklines you are safe
I am now looking into getting an arm port.
http://www.bardaccess.com/port-powerport-slim.php?section=Features
http://www.stealththerapeutics.com/about_invisiport.html
The Lord says, seek and you shall find, ask and you will receive. Angels are God's messengers and yesterday during infusion...I met and talked with one of his angels.
Lo and behold, as me and this fella strike up a conversation during infusion. He shared his cancer narrative and I listend. He had a rare cancer and had been through significant challenges. From not having health insurance when diagnosed to major surgery to a 3 month post-op hospitalization, where his now 8 year old son could not kiss/hug his dad . After listening for a good hour or so...we started talking about veins. His have collapsed and the surgery removed the subclavian vein (where cath snakes along collar bone) So he believed he could not get a port and has a PICC line.. A nurse while trying to access his veins asked why he did not get a port and when he explained about surgery she said why not get an arm port? He had not heard of that. He just learned yesterday, after 4 years of chemo, following his surgery that there is such a thing as an arm port!!
That's right, you can have the port placed between your elbow and shoulder vs. on your chest.
The catheter threads up the basiliac vein vs. along the subclavian prior to reaching the superior vena cava.
I was like hot-diggity!! I immediately goggled arm port on my iphone. We chatted more after the googling.
There are other folks like me who are concerned about the cosmetics and that is one of the features they promote for use of an arm port. It still has the convenience and safety (under skin) of a chest port, but less scaring. Also it is a procedure vs. surgery and local anesthestic is used vs. sedation.
Prayers answered!! as always. God is good.
I was so glad to learn there were other cancer patients who also felt that was just one more thing they did not want to give up to cancer.
wooHOOOoooo!!...sweetheart necklines you are safe
I am now looking into getting an arm port.
http://www.bardaccess.com/port-powerport-slim.php?section=Features
http://www.stealththerapeutics.com/about_invisiport.html
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: PICC vs. port - looking for feedback
Hi snip!!
Thanks for the feedback.
Sorry to learn Bella's 'reverse flow" situation was not an isolated incident.
Makes me focus a lot more on who does the procedure.
What is up with this reverse flow? Is this a dual port problem?
Thanks for the feedback.
Sorry to learn Bella's 'reverse flow" situation was not an isolated incident.
Makes me focus a lot more on who does the procedure.
What is up with this reverse flow? Is this a dual port problem?
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
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