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Stage III
I'm new to this sucky thing called multiple myeloma. My husband who is 52 was just diagnosed before Christmas. He's stage III, already had steriods and starting Revlimid, Decadron, Velcade and Zometa on Friday. We have two children in college and I just need to know what we are looking at.....at stage III are we talking a couple years?
Re: Stage III
I am sure that others with more knowledge then myself will chime in, but my wife was diagnosed three years ago with stage 3 multiple myeloma. She is now in complete remission and feeling good and enjoying life. The initial shock that you are experiencing is the worst part. There are good treatment options available. Good luck to you and your family.
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scott011
Re: Stage III
Hi Sharon, I was diagnosed at age 49 in August, 2011. I have a wife and two young boys. I am so much better mentally and physically than back then. I am not a doctor, but I have read that one's stage of myeloma is not as important as one's response to treatment. Obviously, there may be kidney issues, etc. that have to be dealt with asap. Please don't focus on the outdated stats. They are not worthy of your time. Your husband and I are about the same age. My doctor believes that I have the potential to lead a long, productive life and after 8 months of therapy I am in a good place medically. I worked through treatment with only a few bumps in the road. I now feel basically my old self. Your husband is one the road to recovery and I am rooting for you and your family. Good luck and a big hug. Terry L.
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terryl1 - Name: Terry
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August 10, 2011
- Age at diagnosis: 49
Re: Stage III
Hi,
I was stage 3 when they found it in 2011.
Here we are on a trial of Revlimid in Australia with about 4 months to go till I go cold turkey.
Been on dex for 3 months in 2011.......that was fun...not.
Now just on the basics as remission has been achieved but have back and rib issues and sone bone pain too. That could be just me and my crappy golf swing.
Some bad days still, off work aged 53.... That takes some getting used to and don't know when or of I,ll go back.....can't get a good 3 days in a row.
Plod along each day till the rev trial finishes and see where it all goes
I was stage 3 when they found it in 2011.
Here we are on a trial of Revlimid in Australia with about 4 months to go till I go cold turkey.
Been on dex for 3 months in 2011.......that was fun...not.
Now just on the basics as remission has been achieved but have back and rib issues and sone bone pain too. That could be just me and my crappy golf swing.
Some bad days still, off work aged 53.... That takes some getting used to and don't know when or of I,ll go back.....can't get a good 3 days in a row.
Plod along each day till the rev trial finishes and see where it all goes
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Alex
Re: Stage III
Hi Sharon,
I agree with what Terry said, and the others as well but especially the part where Terry said don't focus on the outdated stats. That will scare the you know what out of you. And I also agree that it doesn't necessarily matter the stage. My husband who is 53 was diagnosed in March of last year. He was very healthy and the way they found it was his lower back kept hurting. Come to find out it was from a tumor on L3. That was his only symptom. His treatment was chemo for about 4 months, 10 rounds of radiation and a stem cell transplant (transplant sounds scary but its not that big of a deal). He made it through all the treatments with flying colors other than a loss of energy and a few days in the hospital of feeling pretty sick from the chemo from the transplant. We own our own business so he was back to work right away but only for a few hours a day. He can work a full day now but it wears him out if he does. So far all his checkups have been good. The big checkup comes on the 17th when we find out what his bloodwork shows, especially what his M spike is. From all indications all should be good though. Good luck to you and your husband and I am happy to answer any questions. I've done a lot of research!!
Liz
I agree with what Terry said, and the others as well but especially the part where Terry said don't focus on the outdated stats. That will scare the you know what out of you. And I also agree that it doesn't necessarily matter the stage. My husband who is 53 was diagnosed in March of last year. He was very healthy and the way they found it was his lower back kept hurting. Come to find out it was from a tumor on L3. That was his only symptom. His treatment was chemo for about 4 months, 10 rounds of radiation and a stem cell transplant (transplant sounds scary but its not that big of a deal). He made it through all the treatments with flying colors other than a loss of energy and a few days in the hospital of feeling pretty sick from the chemo from the transplant. We own our own business so he was back to work right away but only for a few hours a day. He can work a full day now but it wears him out if he does. So far all his checkups have been good. The big checkup comes on the 17th when we find out what his bloodwork shows, especially what his M spike is. From all indications all should be good though. Good luck to you and your husband and I am happy to answer any questions. I've done a lot of research!!
Liz
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LizR
Re: Stage III
I was diagnosed at age 56, last stage and in kidney failure, I was told to my life expectancy was 4-6 months. I sought a second opinion, had a stem cell transplant which resulted in a complete response lasting six years and I am now doing okay on a clinical trial. For me it was difficult not to focus on the stats, and life is not the same, yet each of us has a different experience. I think educating yourselves and seeking treatment from those whom specialize in multiple myeloma is key. Unable to predict the future, I believe living in the moment is best for all of us. Blessings to you.
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justme - Who do you know with myeloma?: Me
- When were you/they diagnosed?: December 2005
- Age at diagnosis: 56
Re: Stage III
Dear Sharon,
I am still here after my diagnosis IGA Lambda stage 3 a little over three years ago. My first treatment was RVD and it lasted four months I had a complete response was off all meds -- my Dr. believed in the less is more approach. I went back into treatment 14 months later RVD for 5 months complete response. This time my first Dr. left for Mayo Clinic in Fla. and instead of being drug free I was advised to go on maintenance 10 mg of Revlimid, I gave it my best but decided my quality of life was just not there so now I am drug free feeling great all the side effects cleared up. After three years of dealing with this disease I am in a better place emotionally but it takes time try to not over do on information gathering and getting sucked into trying to understand all the information from my own experience it produced too much anxiety in time you will find a balance.
Be good to yourself !! Mary Louise
I am still here after my diagnosis IGA Lambda stage 3 a little over three years ago. My first treatment was RVD and it lasted four months I had a complete response was off all meds -- my Dr. believed in the less is more approach. I went back into treatment 14 months later RVD for 5 months complete response. This time my first Dr. left for Mayo Clinic in Fla. and instead of being drug free I was advised to go on maintenance 10 mg of Revlimid, I gave it my best but decided my quality of life was just not there so now I am drug free feeling great all the side effects cleared up. After three years of dealing with this disease I am in a better place emotionally but it takes time try to not over do on information gathering and getting sucked into trying to understand all the information from my own experience it produced too much anxiety in time you will find a balance.
Be good to yourself !! Mary Louise
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mary louise
Re: Stage III
My 55 yr old husband was diagnosed with Stage III in Oct of 2011 with a M-spike of 5.0. He responded very well to Revlimid, dex, and Velcade and the tumors shrank and his bones got stronger. But, then in Feb 2012 new plasmacytomas appeared outside his skeletor system. This is called Extramedullary multiple myeloma. About 10% of multiple myeloma patients develope this complication.
He had a 48-hour round of a continuous chemo combo at UT Southwestern called VDPACE. That knocked the multiple myeloma back again and he had a Auto SCT transplant in May - again at UTSW. However, he was only free of the cancer for 60+days. In July of 2012 the Extramedullary tumors were back, this time in his liver and right kidney. Another 48-hour VDPACE slowed it.
Tom lost his fight with this horrible disease on Oct 7 at 56, a year and 2days after the initial diagnosis. The UTSW specialists all said that his was one of the most aggressive forms they had ever seen.
Everyone is different and I pray that your loved one has a longer and better outcome. Go to a major multiple myeloma center early.
But I encourage you to do the things you always talked about doing NOW. Make time around the treatment schedules.
Prayers and Good Thoughts,
Michelle
He had a 48-hour round of a continuous chemo combo at UT Southwestern called VDPACE. That knocked the multiple myeloma back again and he had a Auto SCT transplant in May - again at UTSW. However, he was only free of the cancer for 60+days. In July of 2012 the Extramedullary tumors were back, this time in his liver and right kidney. Another 48-hour VDPACE slowed it.
Tom lost his fight with this horrible disease on Oct 7 at 56, a year and 2days after the initial diagnosis. The UTSW specialists all said that his was one of the most aggressive forms they had ever seen.
Everyone is different and I pray that your loved one has a longer and better outcome. Go to a major multiple myeloma center early.
But I encourage you to do the things you always talked about doing NOW. Make time around the treatment schedules.
Prayers and Good Thoughts,
Michelle
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mw81 - Name: Michelle
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: 10/5/2011
- Age at diagnosis: 54
Re: Stage III
Sharon11 wrote:
> I'm new to this sucky thing called multiple myeloma. My husband who is 52
> was just diagnosed before Christmas. He's stage III, already had steriods
> and starting Revlimid, Decadron, Velcade and Zometa on Friday. We have two
> children in college and I just need to know what we are looking at.....at
> stage III are we talking a couple years?
I was diagnosed 17 years ago...January of 1996 at age 42.. Stage 3-.after chemo, chemo & more chemo & 2 stem cell transplants in Little Rock, Arkansas..I am still around..no meds, just yearly checkups....also non secreter & deletion of chromosome 13.
Thank God for all the prayers & knowledge of folks at MIRT!
> I'm new to this sucky thing called multiple myeloma. My husband who is 52
> was just diagnosed before Christmas. He's stage III, already had steriods
> and starting Revlimid, Decadron, Velcade and Zometa on Friday. We have two
> children in college and I just need to know what we are looking at.....at
> stage III are we talking a couple years?
I was diagnosed 17 years ago...January of 1996 at age 42.. Stage 3-.after chemo, chemo & more chemo & 2 stem cell transplants in Little Rock, Arkansas..I am still around..no meds, just yearly checkups....also non secreter & deletion of chromosome 13.
Thank God for all the prayers & knowledge of folks at MIRT!
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beach lover
Re: Stage III
Having read the thread I can only wish all of you the very best for the future.
From my own experience - having been diagnosed June 2010, and following Thalidomide, Velcade, dex, cyclophosphamide and a transplant - I am now free of treatment for 18 months but it is coming back it is down to the Immunoglobulin - A, G or M and any chromosome defect that dictates the difficulty of treatment and therefore probable survival time. It would seem that A is very much more aggressive than G - I don't know where M comes into the picture.
Then it is down to the body's own ability to cope with the treatment. With my transplant they gave the strongest chemo they can give and I was in hospital 16 days.
However, on the bright side, there is so much research going on out there worldwide - and they all seem to be keeping each other in the loop, so to speak.
My philosophy is to make the most of every day - but with a bit of an eye to the future.
From my own experience - having been diagnosed June 2010, and following Thalidomide, Velcade, dex, cyclophosphamide and a transplant - I am now free of treatment for 18 months but it is coming back it is down to the Immunoglobulin - A, G or M and any chromosome defect that dictates the difficulty of treatment and therefore probable survival time. It would seem that A is very much more aggressive than G - I don't know where M comes into the picture.
Then it is down to the body's own ability to cope with the treatment. With my transplant they gave the strongest chemo they can give and I was in hospital 16 days.
However, on the bright side, there is so much research going on out there worldwide - and they all seem to be keeping each other in the loop, so to speak.
My philosophy is to make the most of every day - but with a bit of an eye to the future.
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Anna77
20 posts
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