Thanks so much to everyone for the recommendations on getting a port installed. I will be discussing this with my doctor on Thursday.
Chris, I hope your back surgery goes well so that you can get back to the fight soon!
Benny, I hope that you have a good response with the RVD!
Forums
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paj1965 - Name: Paul
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 12/28/16
- Age at diagnosis: 51
Re: Paul, diagnosed yesterday, about to start KRD
I agree with those who have recommended getting a port for your Kyprolis infusions. I had one put in a couple of months ago and am glad that I did. There were times that i would leave the oncologist's office looking like I'd been assaulted on my arms because they had such a hard time getting a good vein.
Blood tests, treatment, etc are now so much easier on me and on the nurses.
All the best for a good result,
Nancy in Phila
Blood tests, treatment, etc are now so much easier on me and on the nurses.
All the best for a good result,
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Paul, diagnosed yesterday, about to start KRD
Just had to cancel several appoints for tests leading up to starting treatment due to a snafu with transitioning to a new benefits provider at the beginning of the year.
I didn't find out about the problem until 4:30 yesterday and made a mad (and unsuccessful) last minute scramble to resolve the problem. Everything will have to slip at least a week.
Frustrating!
I didn't find out about the problem until 4:30 yesterday and made a mad (and unsuccessful) last minute scramble to resolve the problem. Everything will have to slip at least a week.
Frustrating!
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paj1965 - Name: Paul
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 12/28/16
- Age at diagnosis: 51
Re: Paul, diagnosed yesterday, about to start KRD
Hey Paul,
Don't worry about the snafus. From what I've experienced and read, it's common when starting. One thing that I learned quickly was that I need to be the biggest advocate for my treatment and care. The problem with that was that I didn't (still don't 100%) know how everything works. Once you're in the flow of treatment, you'll learn quickly. Ask a lot of questions.
Looks like I may be getting a port after all. Getting stuck so many times in the hospital over the last few weeks has taught me that my good veins have their limits.
(Thanks Mark and Nancy for calling that out!) Also, I may be switching to Kyprolis, which makes it even more apropos.
Good luck, and try not to stress over the snafus.
Don't worry about the snafus. From what I've experienced and read, it's common when starting. One thing that I learned quickly was that I need to be the biggest advocate for my treatment and care. The problem with that was that I didn't (still don't 100%) know how everything works. Once you're in the flow of treatment, you'll learn quickly. Ask a lot of questions.
Looks like I may be getting a port after all. Getting stuck so many times in the hospital over the last few weeks has taught me that my good veins have their limits.
(Thanks Mark and Nancy for calling that out!) Also, I may be switching to Kyprolis, which makes it even more apropos. Good luck, and try not to stress over the snafus.
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PositiveChris - Name: Chris
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 11/28/2016
- Age at diagnosis: 42
Re: Paul, diagnosed yesterday, about to start KRD
Thanks for the advice Chris!
It sure is a steep learning curve coming up to speed on the insurance and financial aspects of this, let alone the medical aspects. I have been able to reschedule all of my appointments for next Thursday, so it looks like only a one week delay.
Glad to hear that you are going to be able to go with a port. I am going to be pushing for it at my next consultation.
Interesting to hear that you are going to switch to Kyprolis too. I hope it works well for you, and I look forward to hearing from you about it.
It sure is a steep learning curve coming up to speed on the insurance and financial aspects of this, let alone the medical aspects. I have been able to reschedule all of my appointments for next Thursday, so it looks like only a one week delay.
Glad to hear that you are going to be able to go with a port. I am going to be pushing for it at my next consultation.
Interesting to hear that you are going to switch to Kyprolis too. I hope it works well for you, and I look forward to hearing from you about it.
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paj1965 - Name: Paul
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 12/28/16
- Age at diagnosis: 51
Re: Paul, diagnosed yesterday, about to start KRD
Hi Paul,
Glad you are moving forward with the Kyprolis, Revlimid, and dexamethasone (KRD) regimen. My husband, also IgG myeloma and 43 years old, just underwent an autologous stem cell transplant in August after 4 months of KRD induction. Though he only had an M-spike of 1.5 g/dL, bone marrow percentage at around 5-8% and two plasmacytomas, his doctor (also at MD Anderson, as in your case) encouraged us to hit it hard while it was still at a low disease burden.
My husband didn't have an issue with veins for the infusions, so he never got a port, but he made sure to drink tons of water right beforehand to "plump" them. He did experience fatigue, heavy chest pressure, and shortness of breath the first few times he was infused, but we aren't sure if it was the Zometa he received at the same time as the Kyprolis, He also got a few bronchial infections (which Kyprolis can lead to / exacerbate), but overall the induction was manageable. He got to minimal residual disease (MRD) negative before the transplant and is now doing great; he was back to work part time about a month after leaving the hospital following his (inpatient) transplant.
Glad you are moving forward with the Kyprolis, Revlimid, and dexamethasone (KRD) regimen. My husband, also IgG myeloma and 43 years old, just underwent an autologous stem cell transplant in August after 4 months of KRD induction. Though he only had an M-spike of 1.5 g/dL, bone marrow percentage at around 5-8% and two plasmacytomas, his doctor (also at MD Anderson, as in your case) encouraged us to hit it hard while it was still at a low disease burden.
My husband didn't have an issue with veins for the infusions, so he never got a port, but he made sure to drink tons of water right beforehand to "plump" them. He did experience fatigue, heavy chest pressure, and shortness of breath the first few times he was infused, but we aren't sure if it was the Zometa he received at the same time as the Kyprolis, He also got a few bronchial infections (which Kyprolis can lead to / exacerbate), but overall the induction was manageable. He got to minimal residual disease (MRD) negative before the transplant and is now doing great; he was back to work part time about a month after leaving the hospital following his (inpatient) transplant.
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texgal79 - Who do you know with myeloma?: Husband
- When were you/they diagnosed?: 2016
- Age at diagnosis: 43
Re: Paul, diagnosed yesterday, about to start KRD
Well, the day has finally arrived. After a lot of fun and games with insurance as a result of changing coverage at the start of the new year (good safety tip there - don't schedule any treatment for the first week or so in January if you change insurance!), I am finally getting my first dose of Kyprolis and dexamethasone this afternoon!
The Revlimid will start next week. There was a hold up in getting it ordered and approved. This might turn out to be an advantage, though. I will be able to see how I respond to Kyprolis and dex before we introduce the Revlimid to the mix.
I am anxious to get this train rolling but apprehensive as well. Just when I thought we had the insurance completely nailed down, I got a call from MD Anderson that MDA is 'in network' for multiple myeloma treatment, but suddenly 'out of network' for stem cell transplants. What the? Anyway, now it's back to getting on the phone with MDA, the insurance company, and probably a whole new hospital system to get things fully back on track. I had such a sweet deal where my myeloma doctor was going to be the same as my transplant doctor - a rare case, I've heard. Now I am looking at multiple doctors with multiple hospitals and possibly more (and redundant) tests. Sounds like chaos.
I also found out yesterday that I won't be able to get my blood draw and treatment with one stick each day. My doctor had said that was possible, which was important, since I am a hard stick case. I thought that I could get along with 2 sticks a week, but now I am facing 4 minimum and I will go through good veins way to fast, so I am back to considering a port. I was resisting a port since my doctor told me that it would have to be removed in preparation for the transplant.
I'm also wondering if I'll have to have a port installed twice -- once for treatment, and then another for the stem cell transplant process.
Anyway, wish me luck with my treatment – just minimal side effects. Fingers crossed.
As they say in the war movies: 'Cover me! I'm goin' in!'
The Revlimid will start next week. There was a hold up in getting it ordered and approved. This might turn out to be an advantage, though. I will be able to see how I respond to Kyprolis and dex before we introduce the Revlimid to the mix.
I am anxious to get this train rolling but apprehensive as well. Just when I thought we had the insurance completely nailed down, I got a call from MD Anderson that MDA is 'in network' for multiple myeloma treatment, but suddenly 'out of network' for stem cell transplants. What the? Anyway, now it's back to getting on the phone with MDA, the insurance company, and probably a whole new hospital system to get things fully back on track. I had such a sweet deal where my myeloma doctor was going to be the same as my transplant doctor - a rare case, I've heard. Now I am looking at multiple doctors with multiple hospitals and possibly more (and redundant) tests. Sounds like chaos.
I also found out yesterday that I won't be able to get my blood draw and treatment with one stick each day. My doctor had said that was possible, which was important, since I am a hard stick case. I thought that I could get along with 2 sticks a week, but now I am facing 4 minimum and I will go through good veins way to fast, so I am back to considering a port. I was resisting a port since my doctor told me that it would have to be removed in preparation for the transplant.
I'm also wondering if I'll have to have a port installed twice -- once for treatment, and then another for the stem cell transplant process.
Anyway, wish me luck with my treatment – just minimal side effects. Fingers crossed.
As they say in the war movies: 'Cover me! I'm goin' in!'
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paj1965 - Name: Paul
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 12/28/16
- Age at diagnosis: 51
Re: Paul, diagnosed yesterday, about to start KRD
Good luck, Paul. It sounds like you've had to jump through a lot of hoops to get started on this treatment. Too bad insurance coverage can get in the way of just getting well.
It is likely you will need a central line (maybe a Hickman) for transplant, not a port. If you're going that way, you may want to wait on the port for initial treatment to avoid having to put in and then removed. For me I did regular IV pokes for initial treatment, had a Hickman installed for the transplant, then a port put in after transplant when the Hickman was removed.
It is likely you will need a central line (maybe a Hickman) for transplant, not a port. If you're going that way, you may want to wait on the port for initial treatment to avoid having to put in and then removed. For me I did regular IV pokes for initial treatment, had a Hickman installed for the transplant, then a port put in after transplant when the Hickman was removed.
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Mark Pouley - Name: Mark
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 53
Re: Paul, diagnosed yesterday, about to start KRD
Hi Paul,
Glad you are getting started.
So much of your care will be doctor or center specific, but I encourage you to push back a little on the 4 stick outcome. A lot of this is center logistics, not hard rules.
My husband is now one year into treatment with Kyprolis, Revlimid, and dexamethasone (KRD). He gets 2 IVs (and optimally 2 sticks) weekly. His blood is drawn through the IV by the RN (not the phlebotomy staff) at the infusion center before the first infusions each week. He also gets less blood collected, as we asked them to stop collecting the backup "type and cross" emergency tube that was protocol.
Every drop he keeps helps.
A few at our center have only one stick, electing to keep the IV in for one day, as the Kyprolis infusions are on back to back days. He is blessed with good veins so no port or protecting IVs.
My husband had a central line only for the stem cell collection (3 days from start to finish). The stem cell transplant did require a PICC in his left arm for (I think) 16 days total.
Glad you are getting started.
So much of your care will be doctor or center specific, but I encourage you to push back a little on the 4 stick outcome. A lot of this is center logistics, not hard rules.
My husband is now one year into treatment with Kyprolis, Revlimid, and dexamethasone (KRD). He gets 2 IVs (and optimally 2 sticks) weekly. His blood is drawn through the IV by the RN (not the phlebotomy staff) at the infusion center before the first infusions each week. He also gets less blood collected, as we asked them to stop collecting the backup "type and cross" emergency tube that was protocol.
Every drop he keeps helps. A few at our center have only one stick, electing to keep the IV in for one day, as the Kyprolis infusions are on back to back days. He is blessed with good veins so no port or protecting IVs.
My husband had a central line only for the stem cell collection (3 days from start to finish). The stem cell transplant did require a PICC in his left arm for (I think) 16 days total.
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rick - Name: rick
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: nov 2015
- Age at diagnosis: 50
Re: Paul, diagnosed yesterday, about to start KRD
Thanks for the replies and recommendations, Mark and Rick! I'm going to try to get by without the port to start with by drinking lots of water before hand to plump my veins up. I'm also going to ask again about getting the IV inserted to start with and having the blood drawn using that.
I really appreciate your guidance!
I really appreciate your guidance!
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paj1965 - Name: Paul
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 12/28/16
- Age at diagnosis: 51
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