My mom is starting VRD this week (thus all the questions).
In your experience, should she get a port?
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Re: Port or no port?
I wasn't able to have a port because of a dialysis port that was part of my multiple myeloma treatment. I wish I could have had one.
I see patients coming in, while I'm getting Zometa, with ports for their treatment and they are in and out painlessly.
I see patients coming in, while I'm getting Zometa, with ports for their treatment and they are in and out painlessly.
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
Re: Port or no port?
I would imagine it would depend on how the drugs are being given. Nowadays, Velcade is an injection, and Revlimid and dex are pills, so I would not think you would need a port.
Zometa is an infusion, but typically it is given once a month. While it may make the process a bit less painful, as Wayne mentions, ports can get infected. Timewise, EJ's Zometa treatments take less than 20 minutes, so I'm not sure they are worth the trouble of the upkeep.
Lyn
Zometa is an infusion, but typically it is given once a month. While it may make the process a bit less painful, as Wayne mentions, ports can get infected. Timewise, EJ's Zometa treatments take less than 20 minutes, so I'm not sure they are worth the trouble of the upkeep.
Lyn
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Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53
Re: Port or no port?
I never had a port put in but that was because I am a cyclist and was concerned about infection. I have just alternated arms and that has worked ok. The port is great if you are getting a lot of infusions or you have issues with the veins in the arms.
Ron
Ron
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: Port or no port?
I never had a port either! At the time I was getting Velcade infusions, it was through a vein, but now many times Velcade is given subcutaneously. I had a Hickman catheter for several months during the time of my auto stem cell transplant, and it was removed after the 100 day interval, when it was known that I wouldn't be having a second transplant then.
Since then, I still had many sessions of Aredia infusions, done by IV, and then also dozens of lab appointments to get blood drawn for testing. I still do have functioning veins, but sometimes it takes the lab tech a while to find one for a blood draw!
But that's the reality of having a blood cancer I guess. If I had had a port installed at the beginning of my 'journey', it probably would have been changed out by now. I have been fortunate to not need one actually.
Since then, I still had many sessions of Aredia infusions, done by IV, and then also dozens of lab appointments to get blood drawn for testing. I still do have functioning veins, but sometimes it takes the lab tech a while to find one for a blood draw!
But that's the reality of having a blood cancer I guess. If I had had a port installed at the beginning of my 'journey', it probably would have been changed out by now. I have been fortunate to not need one actually.
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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: Port or no port?
When I had VRD treatment I had no port and I wouldn't want one for just that treatment alone. I had the Velcade shots in my stomach and they weren't painful at all.
I had a port put in for my stem cell transplant and couldn't wait to get it out. It was a pain to shower with, always having to tape it up.
I had a port put in for my stem cell transplant and couldn't wait to get it out. It was a pain to shower with, always having to tape it up.
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DallasGG - Name: Kent
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 6/20/2013
- Age at diagnosis: 56
Re: Port or no port?
I don't know what the procedure is at different infusion centers, but the one I've been going to draws lab blood before every infusion. For me, that was half the discomfort, and I think to avoid 6 needles a week I might still consider a port.
I'm sure it depends on the individual, but at my age, veins aren't accessed readily.
Hopeful I believe you will have to decide what is the least invasive for your mother based on her acceptance of needles. You might want to find out just how often she will have to be stuck.
I'm sure it depends on the individual, but at my age, veins aren't accessed readily.
Hopeful I believe you will have to decide what is the least invasive for your mother based on her acceptance of needles. You might want to find out just how often she will have to be stuck.
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
Re: Port or no port?
If you suffer from neuropathy with Velcade it is usually better to receive it sub-cutaneously so a port is not really necessary and can be a source of infection.
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Ricer - Name: David Rice
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Dec 2013
- Age at diagnosis: 64
Re: Port or no port?
My first treatments in 2011 began with Velcade infusion and dexamethasone orally. Velcade was given as an IV push. It took about 10 minutes and was not painful. I never received a port. Revlimid, of course, was taken orally. I am glad that a port was not recommended, however, I don't mind getting "stuck." 
If there is a problem with needles, vein accessibility or altered mental status, the port would probably be kinder to the patient and easier for the nurses
I had a very good response to this therapy despite the fact that it was stopped prematurely due to neuropathy. I don't think that there is any right or wrong here. It depends on many things.
Mary
Frisco, Texas
If there is a problem with needles, vein accessibility or altered mental status, the port would probably be kinder to the patient and easier for the nursesI had a very good response to this therapy despite the fact that it was stopped prematurely due to neuropathy. I don't think that there is any right or wrong here. It depends on many things.
Mary
Frisco, Texas
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meread - Name: Mary E Read
- Who do you know with myeloma?: Me, exhusband (deceased)
- When were you/they diagnosed?: April 2011, May 2009
- Age at diagnosis: 67
Re: Port or no port?
Hello,
My husband did get a port around his third month of infusions because, although his veins looked good, they rolled away when the needles tried to puncture them. The nurses felt worse than he did, since it was very common for them to try three or four times to finally get the IV in his vein, and he had to get sooo many infusions it wasn't funny after a while.
He was in a clinical study for newly diagnosed multiple myeloma patients and received Kyprolis (carfilzomib) infusions for 24 months. The first 8 months he was infused Mon & Tues three weeks every month, then months 9 thru 24 he was infused Mon and Tues every other week. He'd also get his monthly Zometa infusions thru his port.
He never got any infections in his port, but maybe that's because he also had the IV disconnected when he left on Monday, even though he would be back the next day for his next infusion. The nurses said some patients left the connection in for the port until the next day, but he was afraid he might do something to it in the night that would cause it to open up. And since the port goes into the vein leading to the heart, that would have been too scary for words.
The port was wonderful for him. Also for me, because I hated seeing the nurses trying to get the IV in over and over. It wasn't their fault, even the go-to nurses who could always get the difficult IVs in had problems with him.
If you find the nurses continually have problems getting your IV in, I wouldn't hesitate to ask your doctor about it. My husband was glad when he was done with his infusions and it was taken out, but he was very, very glad to have it in when he needed it.
Best wishes to you.
Chris M.
My husband did get a port around his third month of infusions because, although his veins looked good, they rolled away when the needles tried to puncture them. The nurses felt worse than he did, since it was very common for them to try three or four times to finally get the IV in his vein, and he had to get sooo many infusions it wasn't funny after a while.
He was in a clinical study for newly diagnosed multiple myeloma patients and received Kyprolis (carfilzomib) infusions for 24 months. The first 8 months he was infused Mon & Tues three weeks every month, then months 9 thru 24 he was infused Mon and Tues every other week. He'd also get his monthly Zometa infusions thru his port.
He never got any infections in his port, but maybe that's because he also had the IV disconnected when he left on Monday, even though he would be back the next day for his next infusion. The nurses said some patients left the connection in for the port until the next day, but he was afraid he might do something to it in the night that would cause it to open up. And since the port goes into the vein leading to the heart, that would have been too scary for words.
The port was wonderful for him. Also for me, because I hated seeing the nurses trying to get the IV in over and over. It wasn't their fault, even the go-to nurses who could always get the difficult IVs in had problems with him.
If you find the nurses continually have problems getting your IV in, I wouldn't hesitate to ask your doctor about it. My husband was glad when he was done with his infusions and it was taken out, but he was very, very glad to have it in when he needed it.
Best wishes to you.
Chris M.
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Chris M
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