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Just diagnosed - what treatments will I likely get?
I was just recently diagnosed & my doctor told me we did not have to use chemo drugs to control the multiple myeloma. We have not talked about a treatment yet but will be in a few days. Does anyone know what drugs he might be talking about & are they as expensive as these chemo drugs that everyone seems to be using on the forums?
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barbara1200 - Name: barb
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2013
- Age at diagnosis: 75
Re: Just diagnosed - what treatments will I likely get?
Hi Barb,
Were you diagnosed with smoldering myeloma or with multiple myeloma?
We ask because, if your diagnosis was multiple myeloma, it would be a bit unusual for you not to be treated right away.
Smoldering myeloma is similar to multiple myeloma, but the disease has not yet advanced to the point where it is causing any symptoms or damage to parts of the body.
If you've been diagnosed with multiple myeloma, and given that you are in the U.S., your initial therapy will probably be one of the following:
Velcade (bortezomib) + dexamethasone (Decadron)
Revlimid (lenalidomide) + dexamethasone
Revlimid + Velcade + dexamethasone
Velcade + cyclophosphamide (Cytoxan) + dexamethasone
Revlimid and Velcade are new drugs so they are expensive, but all U.S. insurance companies cover their use for newly diagnosed myeloma, so how much you have to pay for them will depend on the copayment or coinsurance your insurance company requires.
If you have not done so yet, you should try to schedule an appointment with a myeloma specialist at a major cancer center to get a second opinion about your diagnosis. Myeloma is not a common disease, so most community-based physicians do not typically see many cases of it each year. They are therefore (generally) not as completely up-to-date as the myeloma specialists that you'll find at major cancer centers.
In Ohio, where you live, both the Cleveland Clinic and Ohio State have a number of myeloma specialists. Specialists at the major cancer centers also may be able to place you in a clinical trial that could give you access to potential new myeloma therapies that are not yet generally available.
Good luck!
Were you diagnosed with smoldering myeloma or with multiple myeloma?
We ask because, if your diagnosis was multiple myeloma, it would be a bit unusual for you not to be treated right away.
Smoldering myeloma is similar to multiple myeloma, but the disease has not yet advanced to the point where it is causing any symptoms or damage to parts of the body.
If you've been diagnosed with multiple myeloma, and given that you are in the U.S., your initial therapy will probably be one of the following:
Velcade (bortezomib) + dexamethasone (Decadron)
Revlimid (lenalidomide) + dexamethasone
Revlimid + Velcade + dexamethasone
Velcade + cyclophosphamide (Cytoxan) + dexamethasone
Revlimid and Velcade are new drugs so they are expensive, but all U.S. insurance companies cover their use for newly diagnosed myeloma, so how much you have to pay for them will depend on the copayment or coinsurance your insurance company requires.
If you have not done so yet, you should try to schedule an appointment with a myeloma specialist at a major cancer center to get a second opinion about your diagnosis. Myeloma is not a common disease, so most community-based physicians do not typically see many cases of it each year. They are therefore (generally) not as completely up-to-date as the myeloma specialists that you'll find at major cancer centers.
In Ohio, where you live, both the Cleveland Clinic and Ohio State have a number of myeloma specialists. Specialists at the major cancer centers also may be able to place you in a clinical trial that could give you access to potential new myeloma therapies that are not yet generally available.
Good luck!
Re: Just diagnosed - what treatments will I likely get?
Hi Barbara,
Is it possible that there is some confusion over terminology? Most of the drugs prescribed for multiple myeloma are not "chemo" in the true sense of the word. Chemo is very indiscriminate and attacks both healthy and diseased cells, without differentiating between the two. The drugs prescribed for myeloma are often referred to as "novel therapies" as they are much more targeted, and not as hard on you as chemo.
These drugs can be expensive, but insurance will often pay for them. If not, there are programs sponsored by drug companies and cancer support groups that can help. The benefits coordinator at your oncologist should be able help you with this, or search the forums here on the Beacon, I know it has come up in the past.
Lyn
Is it possible that there is some confusion over terminology? Most of the drugs prescribed for multiple myeloma are not "chemo" in the true sense of the word. Chemo is very indiscriminate and attacks both healthy and diseased cells, without differentiating between the two. The drugs prescribed for myeloma are often referred to as "novel therapies" as they are much more targeted, and not as hard on you as chemo.
These drugs can be expensive, but insurance will often pay for them. If not, there are programs sponsored by drug companies and cancer support groups that can help. The benefits coordinator at your oncologist should be able help you with this, or search the forums here on the Beacon, I know it has come up in the past.
Lyn
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Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53
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