Hi Everyone,
I'm a 55-year-old (soon to be 56) married woman, living and loving in Phoenix, Arizona (yes, but it's a dry heat).
It was sometime in 2014 that a routine physical revealed an anomaly in my albumin-globulin ratio. I was referred to a hematologist / oncologist who diagnosed me with MGUS and told me "not to worry," but that he wanted to monitor me via blood tests every three months, just to keep an eye on things. He was a lovely man but very paternalistic, with English as a second language, and so I had to do a lot of research of my own to figure out just exactly was going on (I'm an environmental scientist, with a minor in biological science, so researching was a no-brainer for me).
The MGUS progressed and I ended up seeing a specialist when my free light chain ratio crept up over 100. I went through all the tests: full body x-rays, 24-hour urine, bone marrow biopsy, PET scan, and was considered "smoldering", although my specialist predicted I was likely to progress within the next five years.
And progress I did.
In anticipation, I resigned from my job and spent my time "simplifying" at home: painting, replacing carpet, replacing a kitchen counter, removing a high-maintenance pond, etc. I figured that if it got to the point where I would need treatment, I wanted everything to be as easy as possible for my husband and myself to take care of. And if I didn't need treatment, well, it would still be easy and look nice.
Then, in January of this year, it was time to start treatment. So, after nearly four cycles of induction therapy (I had to stop the fourth cycle early because I caught a viral infection that laid me out flat), I had an autologous stem cell transplant. Yesterday I had my blood drawn and next Tuesday I will have a bone marrow biopsy to determine if I have achieved remission.
Frankly, I'm terrified that the transplant might not have worked. I am calling 2019 my Lost Year. I honestly don't know what to do with myself.
Pris
Forums
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Pris - Name: Pris
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: October 2017
- Age at diagnosis: 54
Re: Greetings from Arizona
Pris,
I’m in Arizona too.
I had a stem cell transplant nine years ago, and it reduced my myeloma levels, but it didn’t result in remission. This is very common, and not necessarily bad. My myeloma numbers have gone up and down since then, but my general health is good and I feel fine.
Everyone has a different experience with myeloma, and hopefully the stem cell transplant will result in improvement in your myeloma situation. The important things to remember are that 1) achieving a complete remission is not necessary for successful myeloma control; and, 2) if one approach doesn’t work, there are many other myeloma treatments to try.
Hoping for the best for you.
David
I’m in Arizona too.
I had a stem cell transplant nine years ago, and it reduced my myeloma levels, but it didn’t result in remission. This is very common, and not necessarily bad. My myeloma numbers have gone up and down since then, but my general health is good and I feel fine.
Everyone has a different experience with myeloma, and hopefully the stem cell transplant will result in improvement in your myeloma situation. The important things to remember are that 1) achieving a complete remission is not necessary for successful myeloma control; and, 2) if one approach doesn’t work, there are many other myeloma treatments to try.
Hoping for the best for you.
David
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Arizonan - Name: Arizonan
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2010
- Age at diagnosis: 54
Re: Greetings from Arizona
Hi Pris,
Love your photo; you look so happy.
We're all waiting here. Some, like me, aren't sure if Damocles' sword is held by a single hair or a full head of hair. So we wait.
You're obviously a very level-headed person; so you will be able to handle whatever comes your way.
I pray it's good news Pris.
Regards,
Colm
Love your photo; you look so happy.
We're all waiting here. Some, like me, aren't sure if Damocles' sword is held by a single hair or a full head of hair. So we wait.
You're obviously a very level-headed person; so you will be able to handle whatever comes your way.
I pray it's good news Pris.
Regards,
Colm
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Colm - Name: Colm
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: smoldering April 2016
- Age at diagnosis: 56
Re: Greetings from Arizona
Pris,
Let me echo David's thoughts. I am currently 55 and was diagnosed in November 2017, had four cycles of Velcade, Cytoxan (cyclophosphamide), anddDex, saw my M-spike disappear and no detectable cancer in a bone marrow biopsy, and then had an autologous stem cell transplant last summer.
I totally get your fear that it won't take because six months after my transplant (November / December 2018), my myeloma came back hard. Since then, it's been an ongoing process of figuring out what will work and what won't. (For example, it turns out I just can't do Revlimid.) Currently, I'm doing a series of monthly impatient chemotherapy treatments using a drug combination that used to be used as part of the stem cell transplant process. The first round of that treatment seems to have done some good as my hemoglobin and platelet counts have climbed nicely and all my other major lab numbers are good. We haven't done a free light chain or serum protein electrophoresis (SPEP) recently, but I *feel* great. In fact, I have felt as good the last two weeks as I've felt since the transplant had me briefly in remission around this time last year.
The bottom line here is that even after a failed stem cell transplant, there are many options and you can still live a very full and active life. I'm in no pain, I have no other organ involvement, and I can do most of what I did before I was diagnosed. Just more slowly.
I deeply hope that your transplant gives you a nice long remission. But please don't think that if it doesn't, all hope is lost. I'm still here, still loving and living as fully as I did pre-diagnosis. I don't know what the future holds, but I absolutely refuse to think or worry about it too much. All I do know is that we see new treatments every year and that we can keep beating this thing down every time it rears its ugly head.
Good luck in your journey.
Let me echo David's thoughts. I am currently 55 and was diagnosed in November 2017, had four cycles of Velcade, Cytoxan (cyclophosphamide), anddDex, saw my M-spike disappear and no detectable cancer in a bone marrow biopsy, and then had an autologous stem cell transplant last summer.
I totally get your fear that it won't take because six months after my transplant (November / December 2018), my myeloma came back hard. Since then, it's been an ongoing process of figuring out what will work and what won't. (For example, it turns out I just can't do Revlimid.) Currently, I'm doing a series of monthly impatient chemotherapy treatments using a drug combination that used to be used as part of the stem cell transplant process. The first round of that treatment seems to have done some good as my hemoglobin and platelet counts have climbed nicely and all my other major lab numbers are good. We haven't done a free light chain or serum protein electrophoresis (SPEP) recently, but I *feel* great. In fact, I have felt as good the last two weeks as I've felt since the transplant had me briefly in remission around this time last year.
The bottom line here is that even after a failed stem cell transplant, there are many options and you can still live a very full and active life. I'm in no pain, I have no other organ involvement, and I can do most of what I did before I was diagnosed. Just more slowly.
I deeply hope that your transplant gives you a nice long remission. But please don't think that if it doesn't, all hope is lost. I'm still here, still loving and living as fully as I did pre-diagnosis. I don't know what the future holds, but I absolutely refuse to think or worry about it too much. All I do know is that we see new treatments every year and that we can keep beating this thing down every time it rears its ugly head.
Good luck in your journey.
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Steve Horwitz - Name: Steve Horwitz
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: November 2017
- Age at diagnosis: 53
Re: Greetings from Arizona
Hello Pris,
Thanks for telling us about your myeloma journey so far. It sounds like you are a very organized person, and are going to have time to work through treatments if necessary.
I had a stem cell transplant in 2009. At diagnosis I had a high 'M' protein in the blood (M-spike), and my bone marrow was half full of cancer cells, plus I had bone damage. My induction therapy of Velcade plus dex brought the blood counts down, and then I had an autologous transplant. The numbers were low going into the transplant, and they were also low coming out of it, 100 days later.
At that point, since I was not yet in a complete remission, my oncologist put me onto a low dosage of Revlimid. That was a new drug here in Canada at the time. That worked for me, and my myeloma became undetectable for awhile. So even if your transplant does not put you into a complete remission, a maintenance program may be offered.
Hope that helps!
Thanks for telling us about your myeloma journey so far. It sounds like you are a very organized person, and are going to have time to work through treatments if necessary.
I had a stem cell transplant in 2009. At diagnosis I had a high 'M' protein in the blood (M-spike), and my bone marrow was half full of cancer cells, plus I had bone damage. My induction therapy of Velcade plus dex brought the blood counts down, and then I had an autologous transplant. The numbers were low going into the transplant, and they were also low coming out of it, 100 days later.
At that point, since I was not yet in a complete remission, my oncologist put me onto a low dosage of Revlimid. That was a new drug here in Canada at the time. That worked for me, and my myeloma became undetectable for awhile. So even if your transplant does not put you into a complete remission, a maintenance program may be offered.
Hope that helps!
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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: Greetings from Arizona
Pris,
I hope things go well for you. I was diagnosed in March 2017 and had my autologous stem cell transplant in November. The hardest part was the worry about “if it worked”. What I didn’t understand at the time is that not everyone gets to a state of no M-spike. My M-spike going into transplant was 1.1 g/dL (11 g/l), and was about 1.0 g/dL after. Slowly, over time, my M-spike is now 0.1 g/dL, and has been very stable. I started maintenance at 10 mg Revlimid and recently reduced to 5 mg, 14 days on, 7 off. If I can stay stable until next July, my specialist says I can stop treatment and get a break.
Good luck
I hope things go well for you. I was diagnosed in March 2017 and had my autologous stem cell transplant in November. The hardest part was the worry about “if it worked”. What I didn’t understand at the time is that not everyone gets to a state of no M-spike. My M-spike going into transplant was 1.1 g/dL (11 g/l), and was about 1.0 g/dL after. Slowly, over time, my M-spike is now 0.1 g/dL, and has been very stable. I started maintenance at 10 mg Revlimid and recently reduced to 5 mg, 14 days on, 7 off. If I can stay stable until next July, my specialist says I can stop treatment and get a break.
Good luck
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GoDucks - Name: GoDucks
- Who do you know with myeloma?: me
- When were you/they diagnosed?: March, 2017
- Age at diagnosis: 61
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