Hello,
My 68 year young husband was just diagnosed with Stage II multiple myeloma three weeks ago, days before our daughter's wedding.
What started us on this journey was a phone call from my husband's doctor saying that he was being referred to an oncologist because his 24-hour urine test indicated a problem. Of course I was the one who answered the phone, so I asked what are you talking about? She stated that he showed IgG kappa monoclonal band present. So on to the oncologist. Next bone marrow biopsy, not enough information, but for sure smoldering multiple myeloma, then a bone scan, inconclusive, then PET scan.
He had a PET scan that confirmed two small areas of increased uptake are noted in the T11 vertebrae body with maximum SUV of 3.0. Smaller areas of increased FDG uptake are noted in the vertebral bodies of T5, T6, and also L4 with maximum uptake of 3.0. My husband has no back pain.
He had his first treatment, Velcade plus dex, Monday October 19, 2015. At this appointment, I requested his bone marrow biopsy (BMB), and did so after reading everything I could in this forum and related articles, thank you very much. His oncologist is very optimistic but has not explained why. He mentioned a stem cell transplant (SCT), initially, but seemed to have changed his mind, and said let's talk about that after the induction treatment. I wonder if that is based on his receiving the FISH report and various other information from the BMB.
His FISH reports has the following interpretation:
Probe panel for MM/MGUS was used on interphase nuclei all probes were negative. In FISH studies for plasma cell days radians, up to 80% of myelomas and 40% of monoclonal gammopathy of undetermined significance, cases are expected to be abnormal using the multiple myeloma/MGUS related probes. It goes on to identify the varies: 1p36/1q21, 3cen locus, 6q23(MYB), 9cen locus, 13q14/13q34, 14q32(IGH), 17cen/TP53 locus all say negative (200 cells counted).
Blast 1-2%
Erythroid 32%
Myeloid 50% full range of maturation: rare hypo granular forms
M:E Ratio 1.6:1
Increased plasma cells 15-20 %
The plasma cells show aberrant CD20 and CD117 expression
Flow cytometry shows a kappa-restricted monotype plasma cell population.
Would welcome any insight,
T
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T-wife - Name: T-wife
- Who do you know with myeloma?: My husband
- When were you/they diagnosed?: October 2015
- Age at diagnosis: 68
Re: Husband newly diagnosed with multiple myeloma
T-wife,
Obviously, only your hubby's oncologist can explain his current statements.
None of the typical genetic abnormalities that one worries about with multiple myeloma were apparently detected by the FISH probes you mentioned (at least based on what you said here). Also, a PET/CT FDG SUVmax of 3.0 is not that high (indicating that the lesions weren't that "hot" and had a fairly low level of cancerous activity).
So the above reasons "may" be why the oncologist is currently thinking the way he is. But again, only he can say for sure.
Obviously, only your hubby's oncologist can explain his current statements.
None of the typical genetic abnormalities that one worries about with multiple myeloma were apparently detected by the FISH probes you mentioned (at least based on what you said here). Also, a PET/CT FDG SUVmax of 3.0 is not that high (indicating that the lesions weren't that "hot" and had a fairly low level of cancerous activity).
So the above reasons "may" be why the oncologist is currently thinking the way he is. But again, only he can say for sure.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Husband newly diagnosed with multiple myeloma
Thanks Multibilly,
I guess we shall see how the treatments go! Two down and lots to go. He will start Revlimid as soon as the hoop jumping is complete with the insurance, which should be soon. So far he has tolerated the Velcade well, even felt like exercising on the elliptical for about 45 minutes. He is determined to keep a good frame of mind and exercise whenever possible. With Gods help, this too we shall beat!
I guess we shall see how the treatments go! Two down and lots to go. He will start Revlimid as soon as the hoop jumping is complete with the insurance, which should be soon. So far he has tolerated the Velcade well, even felt like exercising on the elliptical for about 45 minutes. He is determined to keep a good frame of mind and exercise whenever possible. With Gods help, this too we shall beat!
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T-wife - Name: T-wife
- Who do you know with myeloma?: My husband
- When were you/they diagnosed?: October 2015
- Age at diagnosis: 68
Re: Husband newly diagnosed with multiple myeloma
Hi T-wife. I can't speak to the FISH findings but I can tell you that much of your husband's story is very similar to my husband. He was 66 at diagnosis and the journey all started with a yearly physical and finding protein in his urine.
He had additional tests and then was referred to an oncologist for biopsy and scans. At time of diagnosis and during our second opinion at Dana Farber they weren't sure if he might be smoldering and not do treatment since none of his numbers were really bad and many just borderline. But the PET showed two lesions and off we went.
Through it all he tolerated the medication very well. He continued to work and to exercise and eat well. We decided on SCT because his m-spike got stuck between .3 and .4 and his biopsy indicated that the percentage of plasma cells hadn't decreased as much as they would like and since he was fit and now 67 we thought it was a good time to try that. He was very fortunate to get through the transplant without any complications and now at 6 months is working part time, feeling great, exercising and staying positive. We will be celebrating his 68th birthday in Rome at the end of November.
Your husband is right to keep exercising and stay positive. I realize that's much easier for people like our husbands who aren't experiencing great pain or complications. But focus on the good things and plow ahead. The healthier he can keep his body the better he will tolerate the treatment. I wish him well.
He had additional tests and then was referred to an oncologist for biopsy and scans. At time of diagnosis and during our second opinion at Dana Farber they weren't sure if he might be smoldering and not do treatment since none of his numbers were really bad and many just borderline. But the PET showed two lesions and off we went.
Through it all he tolerated the medication very well. He continued to work and to exercise and eat well. We decided on SCT because his m-spike got stuck between .3 and .4 and his biopsy indicated that the percentage of plasma cells hadn't decreased as much as they would like and since he was fit and now 67 we thought it was a good time to try that. He was very fortunate to get through the transplant without any complications and now at 6 months is working part time, feeling great, exercising and staying positive. We will be celebrating his 68th birthday in Rome at the end of November.
Your husband is right to keep exercising and stay positive. I realize that's much easier for people like our husbands who aren't experiencing great pain or complications. But focus on the good things and plow ahead. The healthier he can keep his body the better he will tolerate the treatment. I wish him well.
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Nanjeanne - Name: Nanjeanne
- Who do you know with myeloma?: My Husband
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 66
Re: Husband newly diagnosed with multiple myeloma
Hi Nanjeanne,
I love Rome! Hope you have a wonderful time, it is a magical city with so much to do and see. One tip that most people do not think about, do a walking ghost tour at night, the one we took, don't remember the tour name, sorry, was great, and you see a different aspect of the city, and it gives you a chance to walk off dinner!
November is a great time to visit Rome, it will not be so hot! Thank you for story, hope your husband continues to do well, I know how hard it is for you, it's like we may as well have the darn disease ourselves. Sometimes I think I'm more upset then he is, I'm 11 plus years younger than my husband, however we have been married for 27 plus years, and I want many more and I'm determined to have many more!
My husband is downstairs exercising again this morning!
T
I love Rome! Hope you have a wonderful time, it is a magical city with so much to do and see. One tip that most people do not think about, do a walking ghost tour at night, the one we took, don't remember the tour name, sorry, was great, and you see a different aspect of the city, and it gives you a chance to walk off dinner!
November is a great time to visit Rome, it will not be so hot! Thank you for story, hope your husband continues to do well, I know how hard it is for you, it's like we may as well have the darn disease ourselves. Sometimes I think I'm more upset then he is, I'm 11 plus years younger than my husband, however we have been married for 27 plus years, and I want many more and I'm determined to have many more!
My husband is downstairs exercising again this morning!
T
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T-wife - Name: T-wife
- Who do you know with myeloma?: My husband
- When were you/they diagnosed?: October 2015
- Age at diagnosis: 68
Re: Husband newly diagnosed with multiple myeloma
I'm glad to hear your husband is still energetic enough to do exercise despite currently receiving chemo
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
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