Hi everyone,
I was still not believing that I had multiple myeloma until today when I got my full skeletal survey results, which showed multiple lytic lesions. I guess with my IgA at 4200, high lambda light chains & kappa / lambda ratio of 0.11, etc, that I have to admit that I am now a part of this group.
Have to have another bone marrow biopsy next month (not looking forward to that). I suppose, as my doctor said, that there is no longer any doubt.
How could it change so fast from MGUS to multiple myeloma??
And another question: I'm allergic to cortisone. Are there treatments without the dexamethasone that I've read so much about on these boards? It seems that's part of the standard treatment.
Thanks for your responses.
Forums
6 posts
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Lillyput189 - Who do you know with myeloma?: Self
- When were you/they diagnosed?: MGUS 2011, multiple myeloma 2014
- Age at diagnosis: 54
Re: Had full skeletal survey yesterday
Oh my, I am so sorry to hear that. From what I've read, MGUS or smoldering myeloma can go along just fine for a very long time and then something triggers (no one knows why) and there can be a quite sudden development into multiple myeloma. In other words, it doesn't just gradually become multiple myeloma if it is to change.
Selfish of me to ask, but as a newly diagnosed MGUSer, could you share a little of your journey? And was it just a regular blood test for M-spike that showed the change?
Fortunately, you are here on this forum, where this a wealth of knowledge and support.
All the best.
Selfish of me to ask, but as a newly diagnosed MGUSer, could you share a little of your journey? And was it just a regular blood test for M-spike that showed the change?
Fortunately, you are here on this forum, where this a wealth of knowledge and support.
All the best.
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Toni - Name: Toni
- Who do you know with myeloma?: self - MGUS
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 51
Re: Had full skeletal survey yesterday
Hi Lilliput,
So sorry to hear about your imaging results.
I'm not a doc, so I have no idea if being allergic to cortisone automatically means that you would also be allergic to dex or prednisone (prednisone is used as an alternative to dex).
Regarding non-corticosteroid approaches, see this study. I'm not sure why the study chose to use thalidomide over a newer IMID like Revlimid, but clearly you can use a non-corticosteroid approach to treat the disease.
"Thalidomide-Velcade Combination Without Steroids Is Effective For Newly Diagnosed Multiple Myeloma Patients," The Myeloma Beacon, January 28, 2011.
So sorry to hear about your imaging results.
I'm not a doc, so I have no idea if being allergic to cortisone automatically means that you would also be allergic to dex or prednisone (prednisone is used as an alternative to dex).
Regarding non-corticosteroid approaches, see this study. I'm not sure why the study chose to use thalidomide over a newer IMID like Revlimid, but clearly you can use a non-corticosteroid approach to treat the disease.
"Thalidomide-Velcade Combination Without Steroids Is Effective For Newly Diagnosed Multiple Myeloma Patients," The Myeloma Beacon, January 28, 2011.
Last edited by Multibilly on Thu Jul 24, 2014 7:06 pm, edited 1 time in total.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Had full skeletal survey yesterday
Sorry you have joined a "Club" that wishes it had no members.
Dex is used for several reasons:
-It has anti-myeloma effect.
-It helps re-build the body and Blood back quickly, after the Chemo does it's thing. ( Specifically re-building wbc and rbc's, etc)
-It gives you energy to get thru Treatments.
I suppose #3 above is "iffy" if you are allergic to Dex !
There are other meds that can be used--ie. cotisone / cortisol / cortisolone / HGC / HGH . etc , may have a formualry that you can tolerate.??
Visit with your MD and get his/ her guidance.
Good luck.
Dex is used for several reasons:
-It has anti-myeloma effect.
-It helps re-build the body and Blood back quickly, after the Chemo does it's thing. ( Specifically re-building wbc and rbc's, etc)
-It gives you energy to get thru Treatments.
I suppose #3 above is "iffy" if you are allergic to Dex !
There are other meds that can be used--ie. cotisone / cortisol / cortisolone / HGC / HGH . etc , may have a formualry that you can tolerate.??
Visit with your MD and get his/ her guidance.
Good luck.
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Rneb
Re: Had full skeletal survey yesterday
You received some good feedback from fellow Beaconers that I hope you can use.
I looked at some of your previous posts and it concerns me that your physician wanted you to take a wait and see approach. Are you under the care of a different physician now? Is that a possibility?
I do hope you can see someone who has a lot of experience with myeloma.
I looked at some of your previous posts and it concerns me that your physician wanted you to take a wait and see approach. Are you under the care of a different physician now? Is that a possibility?
I do hope you can see someone who has a lot of experience with myeloma.
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Toni - Name: Toni
- Who do you know with myeloma?: self - MGUS
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 51
Re: Had full skeletal survey yesterday
Hello from rainy Seattle (in July no less!),
I’m very sorry to hear about the results of your skeletal survey. I wish the results had turned out differently.
A couple of quick comments.
1. Your hematologist/oncologist will want to learn more details about your allergy to cortisone. It is unusual. Steroids are a key ingredient for the treatment of myeloma, so you won't want to abandon them unless absolutely necessary.
2. Although in your case it appears that there has been progression from MGUS to symptomatic myeloma, I think it is important for others reading this discussion who have MGUS to point out that most patients with MGUS never develop multiple myeloma. These patients have MGUS for years, but it never causes a problem and ultimately they die of other causes. The rate of progression from MGUS to multiple myeloma is 1% per year. In a large Mayo Clinic series, the actual rate of progression at 25 years of follow-up, when the competing causes of death were taken into account, was 11.2%. That is pretty low and should give comfort to patients with MGUS.
In spite of this generally good prognosis, over time some patients with MGUS unfortunately do develop multiple myeloma but, as I have stated, it generally takes many years. Many people with MGUS are unaware that they have it for years and even for decades.
If your diagnosis is confirmed to be multiple myeloma, please know that there are now many effective treatment options for the disease, and many more very close on the horizon. Although we do not yet have a consistently effective way of curing myeloma patients, our ability to offer them many years of life after their diagnosis is improving each and every year.
Finally, you’ve found a supportive and knowledgeable community of patients, caregivers, and physicians here at the Beacon. Don’t hesitate to make use of it as you continue your journey.
I’m very sorry to hear about the results of your skeletal survey. I wish the results had turned out differently.
A couple of quick comments.
1. Your hematologist/oncologist will want to learn more details about your allergy to cortisone. It is unusual. Steroids are a key ingredient for the treatment of myeloma, so you won't want to abandon them unless absolutely necessary.
2. Although in your case it appears that there has been progression from MGUS to symptomatic myeloma, I think it is important for others reading this discussion who have MGUS to point out that most patients with MGUS never develop multiple myeloma. These patients have MGUS for years, but it never causes a problem and ultimately they die of other causes. The rate of progression from MGUS to multiple myeloma is 1% per year. In a large Mayo Clinic series, the actual rate of progression at 25 years of follow-up, when the competing causes of death were taken into account, was 11.2%. That is pretty low and should give comfort to patients with MGUS.
In spite of this generally good prognosis, over time some patients with MGUS unfortunately do develop multiple myeloma but, as I have stated, it generally takes many years. Many people with MGUS are unaware that they have it for years and even for decades.
If your diagnosis is confirmed to be multiple myeloma, please know that there are now many effective treatment options for the disease, and many more very close on the horizon. Although we do not yet have a consistently effective way of curing myeloma patients, our ability to offer them many years of life after their diagnosis is improving each and every year.
Finally, you’ve found a supportive and knowledgeable community of patients, caregivers, and physicians here at the Beacon. Don’t hesitate to make use of it as you continue your journey.
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Dr. Edward Libby - Name: Edward Libby, M.D.
Beacon Medical Advisor
6 posts
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