I did not have an ASCT. I am a fulltime employee and have not missed any work except for the time spent on my treamtments. My employer provided health insurance covers most of the costs and my co-pays on the drugs and infusions are not significant. The costs covered by insurance inlcude all of my drugs as well as my bi-monthly oncologist visits all infustions and all of the blood tests inlcuding the FLC Assay. Once I retire and go on Medicare the costs out of pocket for co-pays will rise but still most of thes costs will be covered by Medicare and supplemental insurance. I am 60 years old currently and plan to work until I am 67 if I am able. My wife is two years younger than me. She will qualify for medicare when she is 65 so that is why I will work until she turns 65 which is when I am 67.
Ron
Forums
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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: kappa free light chains
Standard risk
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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: kappa free light chains
Thanks. I wish my dad was the standard-risk-er. He had exactly the same regime with yours, and achieved remission, as well. He's still in remission, but Docs are pushing for ASCT. He's a bit weak due to the cyclophosphamide during the harvesting process; we are concerned about the stronger alkylating agent, melphalan. Anyway, best of luck for all of us.
Re: kappa free light chains
Whether or not to do an ASCT now or wait until first relaplse is an ongoing debate. There are a number of us, both standard risk and high risk, that have forgone the ASCT but had stem cells harvested in the event we desire to go down that path later. The reason I chose against it was in part due to the fact that my oncologist is not a big fan of them. The logic to have them is to make the response deeper and thus, in theory, push out the time of a relapse. The problem is that with the novel agents and the ability to mix and match combinations, there is no real evidence that the SCT produces a better and longer lasting benefit. There is however a certainity of higher health risk as the bone marrow is in essence destroyed with the ASCT. Also most people that get an ASCT are put on long term maintenance program with one or more of the same novel agents.
In essence I am on long term maintenance but skipped the SCT. 4 years of remmission and counting. I am heading off for a bike race this afternnoon which starts tommorrow morning.
Just because the novel agents worked for me and continue to work, does not mean that is the best answer for your dad. However, it is worth having the conversation with your oncologist. There is no proof that an ASCT now has any better benefit than having it performed after first relapse. There is also no gaurantee that the ASCT will provide any improvement to the results that he has already achieved.
Ron
In essence I am on long term maintenance but skipped the SCT. 4 years of remmission and counting. I am heading off for a bike race this afternnoon which starts tommorrow morning.
Just because the novel agents worked for me and continue to work, does not mean that is the best answer for your dad. However, it is worth having the conversation with your oncologist. There is no proof that an ASCT now has any better benefit than having it performed after first relapse. There is also no gaurantee that the ASCT will provide any improvement to the results that he has already achieved.
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: kappa free light chains
True. But the ASCT is the standard protocol. I'm hesitant to disregard the recommendations, but at the same time I also question its efficacy and its effect to my Dad's quality of life. I'm a structural engineer, and sometimes architects (lol) do not see what I see. Maybe it's the same case with doctors and us... We learn from history that we don't learn from history. I don't want to make the same mistake... But anyhow, I'm going to support whatever my Dad feels like doing. He's 1.5 years post-diagnosis (and 3 years post-first compression fracture) and still doing fine. I don't want to kill that by forcing him to undergo ASCT.
We are now focusing on keeping his hep B under control. June is the magic month. He's 62 this year. Thanks for your help. We will have FLC test at the end of this month, and we're hoping that his numbers do not shoot up.
By the way, the protocol for maintenance has gone down from 2 years to 1 year--per Mayoclinic's recommendation, if I'm not mistaken.
Yay it's Friday! Thanks for all of your support. They keep us alive.
We are now focusing on keeping his hep B under control. June is the magic month. He's 62 this year. Thanks for your help. We will have FLC test at the end of this month, and we're hoping that his numbers do not shoot up.
By the way, the protocol for maintenance has gone down from 2 years to 1 year--per Mayoclinic's recommendation, if I'm not mistaken.
Yay it's Friday! Thanks for all of your support. They keep us alive.
Re: kappa free light chains
tpt wrote:
> True. But the ASCT is the standard protocol.
I'm not sure I would personally use the word "standard' as far as describing the use of ASCT for multiple myeloma, although you will hear that term used quite a bit by many institutions, including the Mayo. I might instead say that it is the "automatic choice" for quite a number of doctors and clinics. I have been amazed at what a continuum of philosophies there are for frontline treatment based on just the handful of doctors I have directly communicated with since being diagnosed with SMM 6 months ago. If you go to a hospital that is a transplant center (I visited two), guess what? ASCT is the standard of care. But many other groups and doctors would disagree or at least put ASCT and only-novel-agent treatment-with-ASCT-as-backup-plan on equal footing.
You might find this thread enlightening.
https://myelomabeacon.org/forum/looking-for-feedback-on-recommended-first-round-treatment-t1502.html
In any case, it is ultimately your Dad's choice and it will be a highly personal choice with no perfect answer. Best of luck to you and your Dad.
> True. But the ASCT is the standard protocol.
I'm not sure I would personally use the word "standard' as far as describing the use of ASCT for multiple myeloma, although you will hear that term used quite a bit by many institutions, including the Mayo. I might instead say that it is the "automatic choice" for quite a number of doctors and clinics. I have been amazed at what a continuum of philosophies there are for frontline treatment based on just the handful of doctors I have directly communicated with since being diagnosed with SMM 6 months ago. If you go to a hospital that is a transplant center (I visited two), guess what? ASCT is the standard of care. But many other groups and doctors would disagree or at least put ASCT and only-novel-agent treatment-with-ASCT-as-backup-plan on equal footing.
You might find this thread enlightening.
https://myelomabeacon.org/forum/looking-for-feedback-on-recommended-first-round-treatment-t1502.html
In any case, it is ultimately your Dad's choice and it will be a highly personal choice with no perfect answer. Best of luck to you and your Dad.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: kappa free light chains
I reluctantly did a ASCT in January after my doc told me it was standard care. For all the pain and misery I went through for three weeks my numbers are exactly where they were before the transplant. I was pushing for a delayed transplant and use maintenance chemo but the docs at the transplant center said I was making a mistake. My kappa light chains are 23 and my mspike is .4 and now they tell me I should consider a second ASCT. No way, I'm going on maintenance and monitoring the numbers before I accept another ASCT treatment.
You should understand the Mephlan (sp?) is nasty, nasty stuff. It left me so wiped out for three weeks I thought I had already died. The nueropathy I'm fighting in my feet was a major side effect from the ASCT. Personally I think I made a big mistake. Jerry.
You should understand the Mephlan (sp?) is nasty, nasty stuff. It left me so wiped out for three weeks I thought I had already died. The nueropathy I'm fighting in my feet was a major side effect from the ASCT. Personally I think I made a big mistake. Jerry.
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JBarnes - Name: Jerry Barnes
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Aug 17, 2012
- Age at diagnosis: 54
Re: kappa free light chains
I was diagnosed with multiple myeloma in 2007 (stage 3b) and underwent tandem stem cell transplants. These were tough but by 2008 I was virtually in remission. I took Velcade for maintenance for three years at various doses and then stopped completely in 2011. I have led a relatively normal life for the past three years without any meds. My kappa free light chains have just started elevating (8.5) and my M component also has increased so I may consider going on Velcade if the trend continues. Hope this helps all multiple myeloma patients. So far I am still alive after almost 8 years of being diagnosed with multiple myeloma.
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bigalinsc
20 posts
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