Hello. My name is Denise, and my morn was diagnosed with multiple myeloma last Friday after 4 months of tests and waiting. I am relieved to know what we are dealing with, but overwhelmed. I am her primary caregiver, in that my dad is deceased and my only sibling lives out of state. Mom lives on her own, for now.
This all began for us in July when a routine hearing aid appointment led the ENT to do an MRI to “make sure nothing else was going on related to her hearing”. The MRI reported “metastatic disease,” which was shocking to us all, as she did not have cancer and was in relatively good health.
Her bloodwork and urine cultures showed the M spike. Bone marrow biopsy was positive for the myeloma cells and a skull biopsy indicated a “myeloma deposit” on her skull.
She starts treatment on Monday: Weekly Velcade shots, Revlimid (oral) 25 mg daily, and dexamethasone 40 mg weekly. Zofran (ondansetron) before Velcade shot and as needed. Acyclovir. And a monthly Xgeva.
The doctor feels the treatment will be well tolerated. Expects her to be on some sort of oral treatment for the rest of her life.
So that’s us. Thank you for allowing me to be here.
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DGNJ618 - Name: Denise G
- Who do you know with myeloma?: Mom
- When were you/they diagnosed?: 11/2/18
- Age at diagnosis: 75
Re: Mom, 75, recently diagnosed with multiple myeloma
Welcome to the forum, Denise. We're sorry about your mother's diagnosis, but glad you've found this community.
We always recommend that new forum members explore the many links to lists of previous discussions about specific myeloma treatments and side effects you can find in this forum post: "Useful links to existing forum discussions". That post is always listed at the top of the "Treatments & Side Effects" section of the forum.
Another place to look for links to useful lists of previous forum discussions is the part of the sidebar on the right side of the forum that is labeled "Forum Discussions - View By Specific Subject".
The Revlimid, Velcade, and dexamethasone (RVD) treatment regimen your mother's doctor has recommended is very common in newly diagnosed patients in the U.S. You can find information about RVD, and the drugs that are part of the combination regimen, in the post we mentioned above.
If your mother is not currently seeing a myeloma specialist, you may want to consider having her see one in the next month or two for another opinion on her diagnosis and treatment plan. It's not at all clear that a specialist would recommend anything different than her current doctor, but having a relationship with a specialist could prove useful as her myeloma journey progresses. A specialist is likely to have easier access to clinical trials, and more experience with odd side effects or complications that crop up. Also, some specialists might be hesitant to conclude right now that your mother should be on treatment, without any breaks whatsoever, for the rest of her life.
The Beacon maintains a list of U.S. cancer centers with myeloma specialists and a list of specialists who are part of an international working group. There also are a number of forum threads discussing myeloma treatment centers in specific U.S. states. You can find those threads by typing a state name into the forum search box (for example, "Illinois" or You also are likely to find U.S. centers discussed in forum threads you find by searching for your state or country (if you're not in the U.S.) in the forum search bar (for example, "California" or "Oregon", but without the quotation marks).
Good luck!
We always recommend that new forum members explore the many links to lists of previous discussions about specific myeloma treatments and side effects you can find in this forum post: "Useful links to existing forum discussions". That post is always listed at the top of the "Treatments & Side Effects" section of the forum.
Another place to look for links to useful lists of previous forum discussions is the part of the sidebar on the right side of the forum that is labeled "Forum Discussions - View By Specific Subject".
The Revlimid, Velcade, and dexamethasone (RVD) treatment regimen your mother's doctor has recommended is very common in newly diagnosed patients in the U.S. You can find information about RVD, and the drugs that are part of the combination regimen, in the post we mentioned above.
If your mother is not currently seeing a myeloma specialist, you may want to consider having her see one in the next month or two for another opinion on her diagnosis and treatment plan. It's not at all clear that a specialist would recommend anything different than her current doctor, but having a relationship with a specialist could prove useful as her myeloma journey progresses. A specialist is likely to have easier access to clinical trials, and more experience with odd side effects or complications that crop up. Also, some specialists might be hesitant to conclude right now that your mother should be on treatment, without any breaks whatsoever, for the rest of her life.
The Beacon maintains a list of U.S. cancer centers with myeloma specialists and a list of specialists who are part of an international working group. There also are a number of forum threads discussing myeloma treatment centers in specific U.S. states. You can find those threads by typing a state name into the forum search box (for example, "Illinois" or You also are likely to find U.S. centers discussed in forum threads you find by searching for your state or country (if you're not in the U.S.) in the forum search bar (for example, "California" or "Oregon", but without the quotation marks).
Good luck!
Re: Mom, 75, recently diagnosed with multiple myeloma
Thank you so much. Her doctor is on a panel with doctors from Robert Wood Johnson (Rutgers Cancer Institute), so they will also be following her plan. Unfortunately, when I suggested a second opinion on treatment, she said no. 
But right now I am giving her space and will continue to gently suggest that as we go forward.
Thank you again,
Denise
But right now I am giving her space and will continue to gently suggest that as we go forward.Thank you again,
Denise
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DGNJ618 - Name: Denise G
- Who do you know with myeloma?: Mom
- When were you/they diagnosed?: 11/2/18
- Age at diagnosis: 75
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