Hi all - My mom was diagnosed in February with multiple myeloma. At that time the level of multiple myeloma was at 50% and she has a lesion (tumor) on her hip. Course of treatment is Velcade sub-q weekly and dex was added in about 3 weeks ago. She also has rheumatoid arthritis.
I did meet with the doctor when he first explained her results. She is considered an intermediate case, on the FISH test she tested positive on chromosomes 5, 9, and 15. She is 75 years old.
Because she is quite tight lipped about her illness we are having to "figure" out what is going on. I do have access to her labs. What I am seeing I think is not good but I am not sure.
Her serum kappa levels were at 75 before treatment. They dropped to 50 last month but increased to 53 this month. I am more concerned about B2M levels. She was at 4.4 when treatment started and now is at 6.5. Albumin levels are dropping from 4.1 to 3.1 now, and creatinine has gone from 1.1 to 1.2 now.
I am having to try and read these charts via information off the Internet. From what I have read, an increasing B2M while in treatment is indicative that the tumor is not responding to treatment.
I have no idea what is going on with her nor am I sure if its long enough time for treatment to work. We are at 3 months in. Not sure if we should be looking at other treatment options. I have no real information on prognosis as she told the doctor she does not want to know and often only hears what she wants to hear. She shares very little.
Any advice would be appreciated. Thank you!
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Re: Has my mother stopped responding to treatment?
Hi Kbev, My suggestion would be for you to ask your mother if you could accompany her to her appointments with her oncologist, and other medical appointments. Of course, this would only be feasible if you lived close enough to do that, and could get her appointments scheduled at a time convenient to both of you.
As a patient, I almost always have my husband with me at appointments, since I find that having two of us there is better for discussing any issues we may have. It is always easier to talk with the doctors as well as looking at lab results!
As a patient, I almost always have my husband with me at appointments, since I find that having two of us there is better for discussing any issues we may have. It is always easier to talk with the doctors as well as looking at lab results!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Has my mother stopped responding to treatment?
I agree with Nancy about accompanying you mother.
Don't get too concerned about small changes in the figures. It is random testing. For example my creatinine dropped from 6+ at diagnoses to 3 and then below 2. I have fluctuated between 1.3 and 1.9 for almost 4 years since my SCT [stem cell transplant]. I'm 75 and my kidneys aren't in real good shape.
Don't get too concerned about small changes in the figures. It is random testing. For example my creatinine dropped from 6+ at diagnoses to 3 and then below 2. I have fluctuated between 1.3 and 1.9 for almost 4 years since my SCT [stem cell transplant]. I'm 75 and my kidneys aren't in real good shape.
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
Re: Has my mother stopped responding to treatment?
Unfortunately that is not a possibility. She either wants to go in herself or will tell the doctor that if there is any bad news she doesn't want to hear it.
I understand that small changes aren't significant. What I am concerned about is looking at the changes over a 6 month period. What I am seeing is the numbers continue to creep upward with exception of serum kappa which dipped down last month but now went back up again.
The B2M level of 6.4 is particularly disturbing to me.
We have no idea what to expect. Its very frustrating.
I understand that small changes aren't significant. What I am concerned about is looking at the changes over a 6 month period. What I am seeing is the numbers continue to creep upward with exception of serum kappa which dipped down last month but now went back up again.
The B2M level of 6.4 is particularly disturbing to me.
We have no idea what to expect. Its very frustrating.
Re: Has my mother stopped responding to treatment?
Hi Kbev, I can certainly understand that you are very worried about your mother's health. I know that 'patient confidentiality' would mean that she isn't obligated to share her test results, or take others with her to app'ts.
But maybe she wouldn't mind if you were somehow involved in her care, and would give you permission to speak with the doctor too. Possibly another family member or friend could help persuade her to be more willing to accept help.
Hope that works for you.
But maybe she wouldn't mind if you were somehow involved in her care, and would give you permission to speak with the doctor too. Possibly another family member or friend could help persuade her to be more willing to accept help.
Hope that works for you.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Has my mother stopped responding to treatment?
Thanks Nancy - I was able to speak to her doctor today as I am her health surrogate.
Unfortunately she is not responding to treatment. The doctor is giving it one more month. At that time if we see no response he is going to recommend radiation for the lesion on her pelvis. He told me that its a serious decision because it also kills the good blood cells as well as the tumor.
She is also having kidney issues and problems with her potassium. She also now has an enlarged heart. Next week she will go in for an echocardiogram.
With all that she seems to feel ok. I am happy for that but the news today was depressing.
Unfortunately she is not responding to treatment. The doctor is giving it one more month. At that time if we see no response he is going to recommend radiation for the lesion on her pelvis. He told me that its a serious decision because it also kills the good blood cells as well as the tumor.
She is also having kidney issues and problems with her potassium. She also now has an enlarged heart. Next week she will go in for an echocardiogram.
With all that she seems to feel ok. I am happy for that but the news today was depressing.
Re: Has my mother stopped responding to treatment?
P.S. I wonder why suggestion is to move straight to radiation rather than try additional chemo - anyone have any ideas?
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