My mom was diagnosed with multiple myeloma almost two months ago; went in with a hemoglobin at 7, could hardly move, and was experiencing excruciating side pain (which we later learned was due to spontaneous fractures in her ribs).
She has been diagnosed Stage 3B, which is obviously not good. Her 4th vertebrae is mostly hollowed out and she may need to get bone cement injected to keep her spinal column from collapsing. She's 56, has otherwise been healthy and active her whole life (was doing her 10,000 steps a day on her Fitbit up until the month before she went into the hospital), the rock of our family, and my younger sister is only 17.
She is responding to treatment (was inpatient for 2 1/2 weeks) and really likes her oncologist. She is undergoing Revlimid, Velcade, and dexamethasone (RVD) treatment and after four rounds will likely go to Madison, Wisconsin for her stem cell transplant.
She is feeling much better now; able to go up and down stairs, pain is managed, etc, and is my fighting, optimistic mom.
I have a lot of questions, and I came here mostly hoping for realistic, non-sugar coated answers, but mostly just want to hear other experiences with similar staging, and get advice on how I can best support her.
Thanks so much and so grateful this site exists.
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Re: Mother diagnosed Stage 3b at age 56
Hello,
My diagnosis is similar to your mother's. I was diagnosed stage 3 in September 2015 at age 60. Have responded well to Velcade, Cytoxan, and dexamethasone combo. I also receive Zometa once a month for my bones. I will be having an autologous stem cell transplant the end of this month at Moffitt Cancer center in Tampa. My daughter will be my caregiver during my stay in Tampa. I am having an outpatient transplant, and she will be the one to take me to the clinic everyday and report any problems if I am not able to. From reading other posts here, most transplant facilities require a caregiver.
Before treatment, I was walking with a cane due to lesion in hip bone, also had multiple broken ribs. Cane is gone and I have minimal pain in ribs. I too had overall good health prior to diagnosis.
Try not to get information overload. I spent much time looking at info on the Internet about prognosis and life expectancy, but much of the information is not current, and every case is different.
So just being there to help sort through the info that she will receive will be helpful. I had to get a filing system going to handle all the handouts and bills, etc. If you are able to go with her to an appointment, that is great too. Encourage her to write down questions and take them with her to appointments.
Hope all works out well for your family.
My diagnosis is similar to your mother's. I was diagnosed stage 3 in September 2015 at age 60. Have responded well to Velcade, Cytoxan, and dexamethasone combo. I also receive Zometa once a month for my bones. I will be having an autologous stem cell transplant the end of this month at Moffitt Cancer center in Tampa. My daughter will be my caregiver during my stay in Tampa. I am having an outpatient transplant, and she will be the one to take me to the clinic everyday and report any problems if I am not able to. From reading other posts here, most transplant facilities require a caregiver.
Before treatment, I was walking with a cane due to lesion in hip bone, also had multiple broken ribs. Cane is gone and I have minimal pain in ribs. I too had overall good health prior to diagnosis.
Try not to get information overload. I spent much time looking at info on the Internet about prognosis and life expectancy, but much of the information is not current, and every case is different.
So just being there to help sort through the info that she will receive will be helpful. I had to get a filing system going to handle all the handouts and bills, etc. If you are able to go with her to an appointment, that is great too. Encourage her to write down questions and take them with her to appointments.
Hope all works out well for your family.
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JaniceT - Name: Janice
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: September 2015
- Age at diagnosis: 60
Re: Mother diagnosed Stage 3b at age 56
The stage at diagnosis doesn't really mean much in myeloma, unlike in other cancers. There are many people on this forum who really were at death's door with kidney failure, multiple fractures, etc, etc, etc, who responded well to treatment. Many of us have similar stories to your mother's and are living fairly normal lives with working, traveling, raising families, and loving life again. Your mother could also be one of those people.
Be sure that your mother gets copies of all of her lab tests and scans. It is important to have a record of these things in case she decides that she wants to consult with other myeloma specialists in the future. It's also helpful to be able to follow the trends of her disease as time goes on.
All the best to your mother in continuing to respond well to treatment and feeling better,
Nancy in Phila
Be sure that your mother gets copies of all of her lab tests and scans. It is important to have a record of these things in case she decides that she wants to consult with other myeloma specialists in the future. It's also helpful to be able to follow the trends of her disease as time goes on.
All the best to your mother in continuing to respond well to treatment and feeling better,
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
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