Hi Suzie Rose...thanks for sharing. I certainly understand your anxieties about treatments and procedures...was terrified actually during some of my treatments.
The central line was put in because of the SCT....they couldn't do that procedure without it. That gave me about five months of respite from IV insertions into my veins, which helped them to recover actually. i just have my bone building drip by IV now, and my maintenance chemo was taken orally. This makes you realize why people are keen on sub-q Velcade actually, apart from the neuropathy effect. I have two scars under my right clavicle from the line which I am actually very proud of and have shown them off to people, whether they want to see them or not! Of course, in winter here, they do not show anyhow.
The nurses here use a really hot wet facecloth over my wrist and hand to enlarge the veins before they insert a needle. They have had to look for veins all over the place, right up into the thumb area. They are really experienced and seem to have the knack of angling the needle in to avoid hurt. I would rotate between left and right hands...make the hands 'take turns'. I wish I could say that the veins in the elbows were as good...when I get blood taken, it is only from the left arm, because the veins in the right are nowhere to be found.
Best wishes with your treatments...we are cheering for you!
Forums
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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
Susie,
You mentioned phlebitis , I just had my IV 10 days ago, the nurse went in the forearm. It was fine didn't feel a thing, EXCEPT, I never have reactions to aredia unless the IV is done wrong. So upon leaving I didn't feel great, tired. Also the next day which is completely unusual for me. Then I notice my arm is very bruised AND kind of hard swollen where the IV went in....is that phlebitis ? This has not happened before, so I'm curious, did the nurse not get all the way in the vein or thru it or what? I'd like to be prepared for next time since I get aredia every 6 weeks. Thanks for any replies.
You mentioned phlebitis , I just had my IV 10 days ago, the nurse went in the forearm. It was fine didn't feel a thing, EXCEPT, I never have reactions to aredia unless the IV is done wrong. So upon leaving I didn't feel great, tired. Also the next day which is completely unusual for me. Then I notice my arm is very bruised AND kind of hard swollen where the IV went in....is that phlebitis ? This has not happened before, so I'm curious, did the nurse not get all the way in the vein or thru it or what? I'd like to be prepared for next time since I get aredia every 6 weeks. Thanks for any replies.
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Christina - Name: Christina
- When were you/they diagnosed?: June2005
- Age at diagnosis: 52
Re: PICC vs. port - looking for feedback
This suggestion comes a bit from right field. But as you may know, a second generation, pill form of Velcade, MLN9708, is now being used in some front-line studies, such as one overseen by Robert Vescio at Cedars Sinai. And apparently with success and minimum side effects.
See https://myelomabeacon.org/news/2011/12/16/mln9708-son-of-velcade-shows-promising-initial-results-in-multiple-myeloma-ash-2011/
So I think this means that the entire front-line regimen (i.e.., Dex, Rev, Son of Velcade) can be administered orally. So you may want to ask about it. (I know I will when the time comes!)
See https://myelomabeacon.org/news/2011/12/16/mln9708-son-of-velcade-shows-promising-initial-results-in-multiple-myeloma-ash-2011/
So I think this means that the entire front-line regimen (i.e.., Dex, Rev, Son of Velcade) can be administered orally. So you may want to ask about it. (I know I will when the time comes!)
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Anonymous
Re: PICC vs. port - looking for feedback
Hey Christina!
Phlebitis is primarily extreme inflammation of the vein typically due to vesicant (fancy word for tissue destruction) drugs. Usually it aches post -IV then about 36 hrs later you get swelling and redness along the area of the vein where the IV was. You may also have what they call a palpable 'cord' along the vein, it feels hard and raised like a cord. The amount of swelling varies from a small area to a lot of the forearm. And the length of the palpable cord can vary but it is quite tender to the touch. Also the area tends to be not just red but warm as well.
When you talk about putting the IV in wrong, not sure what you are describing. If you get the toxic chemo outside the vein and into the surrounding soft tissue that is called extravasation and you get soft tissue that can become necrotic which can be far more severe. It can result in the loss of the limb. However, if not a lot of extravasation occurs the spot is usually tender, bruised and swollen and typically there is no cord like you have with phlebitis of the vein. So one is soft tissue and the other is vein inflammation.
I don't know if these descriptions help, as they are primarily , what I have seen and experienced personally.
I now anticipate phlebitis after each infusion and take steps to minimize and prevent it.
I immediately put an icepack on following the IV prior to leaving therapy and I keep using ice packs for the next 48 hours. Even so, the phlebitis can show up as redness and swelling on the 3rd day post the IV...the area is typically red, warm and swollen...but I do not have as much of a palpable cord.
Phlebitis increases the risk of thrombphlebitis ( blood clot) which is why it is a major concern. Nurses however are far more concerned about extravasation than phlebitis. I think that is because the folks who have serious extravasation live and hold the instituition liable but serious thrombophlebitis is often times fatal and they do not have an opportunity to pursue liability.
Phlebitis is primarily extreme inflammation of the vein typically due to vesicant (fancy word for tissue destruction) drugs. Usually it aches post -IV then about 36 hrs later you get swelling and redness along the area of the vein where the IV was. You may also have what they call a palpable 'cord' along the vein, it feels hard and raised like a cord. The amount of swelling varies from a small area to a lot of the forearm. And the length of the palpable cord can vary but it is quite tender to the touch. Also the area tends to be not just red but warm as well.
When you talk about putting the IV in wrong, not sure what you are describing. If you get the toxic chemo outside the vein and into the surrounding soft tissue that is called extravasation and you get soft tissue that can become necrotic which can be far more severe. It can result in the loss of the limb. However, if not a lot of extravasation occurs the spot is usually tender, bruised and swollen and typically there is no cord like you have with phlebitis of the vein. So one is soft tissue and the other is vein inflammation.
I don't know if these descriptions help, as they are primarily , what I have seen and experienced personally.
I now anticipate phlebitis after each infusion and take steps to minimize and prevent it.
I immediately put an icepack on following the IV prior to leaving therapy and I keep using ice packs for the next 48 hours. Even so, the phlebitis can show up as redness and swelling on the 3rd day post the IV...the area is typically red, warm and swollen...but I do not have as much of a palpable cord.
Phlebitis increases the risk of thrombphlebitis ( blood clot) which is why it is a major concern. Nurses however are far more concerned about extravasation than phlebitis. I think that is because the folks who have serious extravasation live and hold the instituition liable but serious thrombophlebitis is often times fatal and they do not have an opportunity to pursue liability.
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: PICC vs. port - looking for feedback
Thanks Suzierose,
I guess neither what you describe is what it's like. Just bruising and the vein seemed a little cord like . The bruising is almost gone today. Yes, i have heard of the other and I know the nurses are always careful.
Maybe it was just a lousy poke, since I usually don't bruise in the spot except a tiny bit. Well, onward to the next one in 5weeks. Although, I am not sure as to why in all this time , I've had the few and then felt lousy for the rest of the day. Maybe the drip was faster than usual. Oh well, life as a MMer.
Thanks for your medical and detailed response.
I guess neither what you describe is what it's like. Just bruising and the vein seemed a little cord like . The bruising is almost gone today. Yes, i have heard of the other and I know the nurses are always careful.
Maybe it was just a lousy poke, since I usually don't bruise in the spot except a tiny bit. Well, onward to the next one in 5weeks. Although, I am not sure as to why in all this time , I've had the few and then felt lousy for the rest of the day. Maybe the drip was faster than usual. Oh well, life as a MMer.
Thanks for your medical and detailed response.
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Christina - Name: Christina
- When were you/they diagnosed?: June2005
- Age at diagnosis: 52
Re: PICC vs. port - looking for feedback
suzierose,
In response to several of the subsequent questions you brought up..
Cosmetically, my port is definitely noticeable. I have a dual port, which is slightly larger, and it looks like I have half a golf ball under my skin. The scar is about 1.5 inches long. You can also see the catheter running under the skin up and over my collar bone (this is the part that reminds me of the Jem'Hadar which have the tube running outside, then into their neck). I also find seat belts irritate it, and typically adjust the seat position or the shoulder harness height to try and compensate. Note - it's only an issue on the passenger side.
I experience some discomfort when they access the port, but it is less than I felt when they put an IV in my arm. I barely feel anything when the right side of the dual port is accessed and a quick sharp poke when the left side is accessed. I assume this is due to how many nerves remain following the surgery. You can get a Lidocaine cream to apply before accessing the port, which tends to numb the area. However, I found out I was allergic to the cream and don't bother with anything now since it's not that painful anyway.
The surgery to insert the port lasted about 45 minutes (plus about an hour pre-op and another half hour post-op). It was performed under a combination of a local anesthetic and conscious sedation. I didn't actually feel any pain during the procedure, but since I wasn't fully out, I was somewhat aware of what was happening and that was a bit disturbing, particularly when they were snaking the catheter up over my collar bone and then down into the vein.
I was due for infusion the same day I had the port inserted, so after they accessed it and made sure it was working, they left it accessed and I had my infusion a couple hours later. I took some extra strength Tylenol for a few days afterward, but no prescription pain-killers. The area was generally not painful after the first couple days, except if touched. I was out riding my bike within a week after the surgery.
In response to several of the subsequent questions you brought up..
Cosmetically, my port is definitely noticeable. I have a dual port, which is slightly larger, and it looks like I have half a golf ball under my skin. The scar is about 1.5 inches long. You can also see the catheter running under the skin up and over my collar bone (this is the part that reminds me of the Jem'Hadar which have the tube running outside, then into their neck). I also find seat belts irritate it, and typically adjust the seat position or the shoulder harness height to try and compensate. Note - it's only an issue on the passenger side.
I experience some discomfort when they access the port, but it is less than I felt when they put an IV in my arm. I barely feel anything when the right side of the dual port is accessed and a quick sharp poke when the left side is accessed. I assume this is due to how many nerves remain following the surgery. You can get a Lidocaine cream to apply before accessing the port, which tends to numb the area. However, I found out I was allergic to the cream and don't bother with anything now since it's not that painful anyway.
The surgery to insert the port lasted about 45 minutes (plus about an hour pre-op and another half hour post-op). It was performed under a combination of a local anesthetic and conscious sedation. I didn't actually feel any pain during the procedure, but since I wasn't fully out, I was somewhat aware of what was happening and that was a bit disturbing, particularly when they were snaking the catheter up over my collar bone and then down into the vein.
I was due for infusion the same day I had the port inserted, so after they accessed it and made sure it was working, they left it accessed and I had my infusion a couple hours later. I took some extra strength Tylenol for a few days afterward, but no prescription pain-killers. The area was generally not painful after the first couple days, except if touched. I was out riding my bike within a week after the surgery.
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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 Again! I am sorry that you are having such an awful time with the infusions, Suzierose. I was surprised to note that most people on this conversation talked about having needles into their forearms, whereas mine are always on the back of the hands. I wondered why that would be...I never had any problems with the hands, except for 'disappearing' veins. I can even get up and walk around the hospital, attached to the stand with the bag of aredia! It is probably just variations of treatment between different centres. Hope you can get your problems with this resolved really soon!
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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
Hi Susie Rose
I had a port inserted before I had my stem cell trasplant in November 2010. It seems like the nurses could never find a good vein. My experience with the surgery was very good. It was a simple procedure, the docter said it would only take him 15 minutes to put it in. I had medication for the procedure so I was out during the procedure and I walked out with my daughter, went home; and never experienced any pain or side effects from the surgery. I don't have a horrible scar but it is noticeable, a little bump. The problem was, that they could not get a return or have blood come back on the line. I had to endured doing silly things, like putting my hands above my head, having to lay back as far back as my chair could go, coughing, turning my head the opposite way for the port to work, and that's just the ones I can remember! I finally had to go back to the doctor who inserted the port, and he took an xray and said there was no blockage and that it was okay to continue using the port for my monthly Zometa treatments. In other word, it only works one way and not how it should work! I decided to keep it because because I do not want to go through the expense if having it removed or replaced.
I had a port inserted before I had my stem cell trasplant in November 2010. It seems like the nurses could never find a good vein. My experience with the surgery was very good. It was a simple procedure, the docter said it would only take him 15 minutes to put it in. I had medication for the procedure so I was out during the procedure and I walked out with my daughter, went home; and never experienced any pain or side effects from the surgery. I don't have a horrible scar but it is noticeable, a little bump. The problem was, that they could not get a return or have blood come back on the line. I had to endured doing silly things, like putting my hands above my head, having to lay back as far back as my chair could go, coughing, turning my head the opposite way for the port to work, and that's just the ones I can remember! I finally had to go back to the doctor who inserted the port, and he took an xray and said there was no blockage and that it was okay to continue using the port for my monthly Zometa treatments. In other word, it only works one way and not how it should work! I decided to keep it because because I do not want to go through the expense if having it removed or replaced.
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bella
Re: PICC vs. port - looking for feedback
Hey Nancy!
Yes, I have really had a challenging time with these veins of mine. Before I started the icing, I was filling up the tub with steaming hot water and just immersing myself so I could get relief from the swollen arms and aching veins.
The one time I had the IV in my hand, it was very uncomfortable throughout the infusion and my hand was swollen for 3 days afterwards. I found the hand swelling worse than the arms, since so many more folks grab your hand than your arm, y'know?
I've always been mobile though with the infusion even though it was in the forearm, I could still get up and move around.
You sound like such a trooper Nancy, with all you have gone through and how you wear your port incision with honor, I am a wuss about that kinda stuff. Even if my cytogenetic profile did support ASCT, I don't believe i would opt for it..cause it just frightens me too bad. I would need to be sedated before, after and during the procedure in order to get through it. And the worse part is that I am uber paranoid of sedation!!!...so I would run 80miles in the other direction, and I know my spouse would be pulling me heels draggin to the procedure..just as he did to the BM biopsy. You would have thought I was a toddler. (folks did stare)..I don't think that nurse had ever seen such.. but there was no shame in my game..I was bawling, tears streaming and nose running...quite the sight. Mine you this was after taking Valium before leaving home...and since I was so wound up when we arrived..they gave me Ativan..
Yes, I have really had a challenging time with these veins of mine. Before I started the icing, I was filling up the tub with steaming hot water and just immersing myself so I could get relief from the swollen arms and aching veins.
The one time I had the IV in my hand, it was very uncomfortable throughout the infusion and my hand was swollen for 3 days afterwards. I found the hand swelling worse than the arms, since so many more folks grab your hand than your arm, y'know?
I've always been mobile though with the infusion even though it was in the forearm, I could still get up and move around.
You sound like such a trooper Nancy, with all you have gone through and how you wear your port incision with honor, I am a wuss about that kinda stuff. Even if my cytogenetic profile did support ASCT, I don't believe i would opt for it..cause it just frightens me too bad. I would need to be sedated before, after and during the procedure in order to get through it. And the worse part is that I am uber paranoid of sedation!!!...so I would run 80miles in the other direction, and I know my spouse would be pulling me heels draggin to the procedure..just as he did to the BM biopsy. You would have thought I was a toddler. (folks did stare)..I don't think that nurse had ever seen such.. but there was no shame in my game..I was bawling, tears streaming and nose running...quite the sight. Mine you this was after taking Valium before leaving home...and since I was so wound up when we arrived..they gave me Ativan..
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: PICC vs. port - looking for feedback
Bella,
I gotta tell ya...your port post just leaves me speechless!!
I gotta tell ya...your port post just leaves me speechless!!
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
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