Hello, everyone,
My name is Paul and I was officially diagnosed yesterday with IgG kappa multiple myeloma. I have been lurking here for a while since my initial prognosis in order to come up to speed on myeloma and I really appreciate the amount of information that folks are posting.
I started experiencing bone pain in my 7th rib back in October, which led to chest X-rays that identified a lesion. That was followed by prostate and thyroid exams and a referral to an oncologist. There, I received a preliminary prognosis of multiple myeloma and had more testing done, including a blood work, a full skeletal survey and bone biopsy. The survey showed only the one lesion and the biopsy indicated normal levels for everything. The blood work came back with an M-protein of 1.1 g/dL (11 g/L).
I was referred to MD Anderson for a second opinion and had a comprehensive set of testing done, including another bone biopsy, more blood work including FISH, another skeletal survey and a full body PET scan. This testing confirmed the single rib lesion. All of the test results were either in or close to normal ranges, with the following exceptions:
IgG of 1644 mg/dL
Kappa free light chain of 25899 mg/dL
Kappa/lambda ratio of 41.82
LDH of 2324 U/L
Based on this, my doctor is recommending starting treatment in January with Kyprolis, Revlimid, and dexamethasone (KRD), followed by an autologous stem cell transplant as soon as my numbers look good.
So, looks like 2017 is going to be an interesting year.
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
Hi Paul.
Welcome to the forum and wishing you the best going forward.
I've written a few responses recently to men around your age with newly diagnosed myeloma and I'd recommend you check out PositiveChris and Benny's posts for other younger myeloma patients 1-2 months ahead of you (PositiveChris's introduction thread and his RVD / VRD treatment thread)
My husband is a year ahead of you. Diagnosed at 50 last year with a similar story, then 1 cycle Velcade, Revlimid, and dexamethasone (VRD / RVD) and four of Kyprolis, Revlimid, and dexamethasone (KRD) with an autologous stem cell transplant (ASCT) in June. He was fortunate enough to get to minimal residual disease (MRD) negative before his ASCT and remains so, now after 4 cycles maintenance KRD.
Our 2017 is a slow weaning of meds – to every other week treatment with KRD, and then hopefully maintenance Revlimid if his response remains durable. Myy husband is 4:14 translocation so we are diligent and aggressive.
Our doctors and nurses are all upbeat and believe we are doing great.
You appear to be on the same regimen, likely the same protocol which originated with a trial started by Dr Andrzej Jakubowiak at the University of Chicago.
From where you are, this likely seems so much, perhaps too much, but it got better for us. It will for you to. Say strong and avoid unnecessary risks.
We are all sending healing thoughts.
rick
Welcome to the forum and wishing you the best going forward.
I've written a few responses recently to men around your age with newly diagnosed myeloma and I'd recommend you check out PositiveChris and Benny's posts for other younger myeloma patients 1-2 months ahead of you (PositiveChris's introduction thread and his RVD / VRD treatment thread)
My husband is a year ahead of you. Diagnosed at 50 last year with a similar story, then 1 cycle Velcade, Revlimid, and dexamethasone (VRD / RVD) and four of Kyprolis, Revlimid, and dexamethasone (KRD) with an autologous stem cell transplant (ASCT) in June. He was fortunate enough to get to minimal residual disease (MRD) negative before his ASCT and remains so, now after 4 cycles maintenance KRD.
Our 2017 is a slow weaning of meds – to every other week treatment with KRD, and then hopefully maintenance Revlimid if his response remains durable. Myy husband is 4:14 translocation so we are diligent and aggressive.
Our doctors and nurses are all upbeat and believe we are doing great.
You appear to be on the same regimen, likely the same protocol which originated with a trial started by Dr Andrzej Jakubowiak at the University of Chicago.
From where you are, this likely seems so much, perhaps too much, but it got better for us. It will for you to. Say strong and avoid unnecessary risks.
We are all sending healing thoughts.
rick
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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
Hi Paul.
It's a horrible thing to hear you have myeloma. But there is hope. Treatment may be a bit debilitating, but in the long run, if you can gain life, it's worth it.
I have a forum thread about my transplant experience. If you have a chance to read it, you'll find you're not alone. Good luck and keep us posted.
Regards Barbara
It's a horrible thing to hear you have myeloma. But there is hope. Treatment may be a bit debilitating, but in the long run, if you can gain life, it's worth it.
I have a forum thread about my transplant experience. If you have a chance to read it, you'll find you're not alone. Good luck and keep us posted.
Regards Barbara
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Barbara SA - Name: Barbara SA
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: November 2015
- Age at diagnosis: 55
Re: Paul, diagnosed yesterday, about to start KRD
Hello Paul,
Thank you for posting. My thoughts are with you, and I encourage you to stay strong and positive in 2017!
Your post caught my attention for a few reasons. First, we are close to the same age (I'm 48). I also have been diagnosed with IgG kappa with an M spike of 1.5. As of now I am in the MGUS stage. I have been advised to pay attention and alert my doctor if I experience any "bone pain".
I have a 10 year history of back pain and I'm also dealing with the effects of peripheral neuropathy, so honestly, I wonder with every ache and pain I feel if I am experiencing "bone pain".
I also posted my introduction to the Beacon community last week. I pray both of us experience improved health in 2017!
Jon
Thank you for posting. My thoughts are with you, and I encourage you to stay strong and positive in 2017!
Your post caught my attention for a few reasons. First, we are close to the same age (I'm 48). I also have been diagnosed with IgG kappa with an M spike of 1.5. As of now I am in the MGUS stage. I have been advised to pay attention and alert my doctor if I experience any "bone pain".
I have a 10 year history of back pain and I'm also dealing with the effects of peripheral neuropathy, so honestly, I wonder with every ache and pain I feel if I am experiencing "bone pain".
I also posted my introduction to the Beacon community last week. I pray both of us experience improved health in 2017!
Jon
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ricejon - Name: Jon
- Who do you know with myeloma?: mgus (self)
- When were you/they diagnosed?: 2016
- Age at diagnosis: 47
Re: Paul, diagnosed yesterday, about to start KRD
Thanks for the replies and the encouragement, everyone. Also, I will be reading the information that y'all provided links to. Best wishes to everyone, too.
I am worried about things, but I am past the panicky first few weeks and in a much more productive mindset now. Things are coming together and in many ways I am fortunate.
I feel really fortunate to have MD Anderson so close. The doctor I am seeing in the multiple myeloma unit is actually half time in their transplant unit as well, so I have one less doctor to work with. There also is an MD Anderson annex here in the Houston Clear Lake area, right across the street from Johnson Space Center where I work, so I won't have to travel much during the treatments leading up to the transplant and afterward.
I have been thinking a lot lately about the treatments, particularly the infusions twice a week for the Kyprolis. One thing I have become painfully aware of is that I am a 'hard stick', with few good veins. I am averaging 2 tries for each stick, which makes me apprehensive. It's strange, but once I get past 'the stick', the actual procedures (biopsies, PET scans, etc.) don't seem like that big a deal. I'm sure that others on this site have the same problem, so I will be researching to find out if there is anything I can do to help with this.
My next appointments are on January 5 to start talking with the transplant team, scheduler, and financial assistance rep. Then it's on with the first cycle of treatment!
I am worried about things, but I am past the panicky first few weeks and in a much more productive mindset now. Things are coming together and in many ways I am fortunate.
I feel really fortunate to have MD Anderson so close. The doctor I am seeing in the multiple myeloma unit is actually half time in their transplant unit as well, so I have one less doctor to work with. There also is an MD Anderson annex here in the Houston Clear Lake area, right across the street from Johnson Space Center where I work, so I won't have to travel much during the treatments leading up to the transplant and afterward.
I have been thinking a lot lately about the treatments, particularly the infusions twice a week for the Kyprolis. One thing I have become painfully aware of is that I am a 'hard stick', with few good veins. I am averaging 2 tries for each stick, which makes me apprehensive. It's strange, but once I get past 'the stick', the actual procedures (biopsies, PET scans, etc.) don't seem like that big a deal. I'm sure that others on this site have the same problem, so I will be researching to find out if there is anything I can do to help with this.
My next appointments are on January 5 to start talking with the transplant team, scheduler, and financial assistance rep. Then it's on with the first cycle of treatment!
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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,
My husband was 57 when diagnosed in February, 2016. He is 6'4" (1.93 m) and it looks like he has ropes for veins as he is a retired W4. But looks can be deceiving. He had a port placed 3 weeks ago for his Kyprolis infusions. The port was placed one day, and the infusions started the next.
He said he should have done this months ago. He was stage 3 when diagnosed and had 80 percent bone marrow involvement. He Stopped responding to Revlimid, Velcade, and dexamethasone (RVD) after cycle 6 and when they did the stem cell transplant at Moffitt in August, his M-spike was 1.2 g/dl (12 g/l). It is now 0.76 g/dl, so our oncologist there put him on 4 cycles of the Kyprolis, Revlimid, and dexamethasone (KRD) for consolidation to try and get his M-spike down further.
From a guy who has been going at this a year, get the port. From his wife, a nurse of 32 years, get the port. Just my opinion. Good luck and prayers for all.
My husband was 57 when diagnosed in February, 2016. He is 6'4" (1.93 m) and it looks like he has ropes for veins as he is a retired W4. But looks can be deceiving. He had a port placed 3 weeks ago for his Kyprolis infusions. The port was placed one day, and the infusions started the next.
He said he should have done this months ago. He was stage 3 when diagnosed and had 80 percent bone marrow involvement. He Stopped responding to Revlimid, Velcade, and dexamethasone (RVD) after cycle 6 and when they did the stem cell transplant at Moffitt in August, his M-spike was 1.2 g/dl (12 g/l). It is now 0.76 g/dl, so our oncologist there put him on 4 cycles of the Kyprolis, Revlimid, and dexamethasone (KRD) for consolidation to try and get his M-spike down further.
From a guy who has been going at this a year, get the port. From his wife, a nurse of 32 years, get the port. Just my opinion. Good luck and prayers for all.
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DaleJC28117 - Name: Dale
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: 2016
- Age at diagnosis: 57
Re: Paul, diagnosed yesterday, about to start KRD
G'day Paul,
I 100% back up what Dale has said. Get a port put in. No more missing veins. Less anxiety. I have had my port in now for just over 3 years. I have it flushed when not getting treatments every four weeks. My veins were shot too.
Vic
P.S. - Happy New Year everyone.
I 100% back up what Dale has said. Get a port put in. No more missing veins. Less anxiety. I have had my port in now for just over 3 years. I have it flushed when not getting treatments every four weeks. My veins were shot too.
Vic
P.S. - Happy New Year everyone.
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vicstir - Name: Vic
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: October 2013
- Age at diagnosis: 39
Re: Paul, diagnosed yesterday, about to start KRD
Hi Paul,
My situation is similar to yours. I am 45, was diagnosed with Stage 2 disease with standard risk genetics. I have had one cycle of Velcade, Revlimid, and dexamethasone, and will be getting checked Tuesday to see if I responded.
My situation is similar to yours. I am 45, was diagnosed with Stage 2 disease with standard risk genetics. I have had one cycle of Velcade, Revlimid, and dexamethasone, and will be getting checked Tuesday to see if I responded.
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Benny - Name: BM1971
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 12/2/16
- Age at diagnosis: 45
Re: Paul, diagnosed yesterday, about to start KRD
Welcome to the club Paul. I'm currently paused in my first cycle of Revlimid, Velcade, and dexamethasone (RVD) waiting on back surgery after a femur surgery this week. First cycle seems to be working well. Looking forward to getting back on it.
Luckily, I was blessed with good veins and the Velcade is subcutaneous, or I'd also be considering a port.
Good luck, and look forward to us fighting together!
Luckily, I was blessed with good veins and the Velcade is subcutaneous, or I'd also be considering a port.
Good luck, and look forward to us fighting together!
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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
Welcome to the forums Paul, and good luck with your treatments.
I will also recommend getting a port if you are following the Kyprolis regimen. I have / had "good veins", but the number of blood tests and infusions in my future following the autologous stem cell transplant (ASCT) going to Kyprolis, Pomalyst, and dex (KPD) maintenance had me opt to have a port installed. It was one of my best decisions. It makes the followups easy and painless. I barely notice the port otherwise.
I will also recommend getting a port if you are following the Kyprolis regimen. I have / had "good veins", but the number of blood tests and infusions in my future following the autologous stem cell transplant (ASCT) going to Kyprolis, Pomalyst, and dex (KPD) maintenance had me opt to have a port installed. It was one of my best decisions. It makes the followups easy and painless. I barely notice the port otherwise.
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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
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