All year my mother has been complaining of pain in her ribs. Starting October she was limping. By November she could barely walk on her own. My dad had also had his own complications, peeing blood for 3 weeks, which we just found out is caused by bladder cancer.
My mother's pain got so bad she couldn't bare it any longer. Her primary care doctor said she probably had pneumonia because of all her lung problems -- she normally gets pneumonia a few times a year -- so we took her to the ER and, when the results from all her tests came back, they told us they found 5 lesions on her rib cage going towards her back, which had caused her ribs to fracture. With a biopsy and bone marrow biopsy and all the blood work and also a blood transfusion we learned she had multiple myeloma.
It took us 4 weeks to get an appointment at the cancer center. At our first appointment the oncologist told us her case was aggressive and we had her first treatment of zoledronic acid (Zometa). Today (Dec 16, 2014) was her first treatment of Velcade with dexamethasone and on Dec 19, 2014 we will have her second dose of Velcade with dexamethasone and her first treatment of Doxil.
Her bloodwork today (Dec 16, 2014) showed her beta 2 hemoglobin at high 4.8, her M-spike at high 3.8 g/dL, and her free kappa light chain high at 2750.00 (and everything else either high or low!).
Please any advice or stories of your own would be much obliged. With both parents having cancer, being a single parent and this being my mom's second time (first was breast cancer), I need all the advice I can get!
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Re: Mother diagnosed last month - all advice welcome
Hi KLJR,
Welcome to the forum. Sorry to hear about your Mom. However, the combination of drugs that your Mom is taking (known as VDD) has worked very well for many multiple myeloma patients. VDD coupled with Zometa should also really help with any bone damage and associated pain. So, take heart that your Mom should see improvement soon.
The one piece of advice you will always hear on this forum is to work with a top doctor that specializes specifically in multiple myeloma. I suspect that your Mom's doc may in fact be a multiple myeloma specialist if he is prescribing VDD, but it's always good to also get a second opinion, even if you've already started treatment. If you let us know which city your Mom is being treated in, the folks on this forum can offer up some suggestions on various doctors or institutions to seek out.
BTW, when you talk about free light chain values, its usually good to also include the free light chain ratio in your updates, not just the kappa number (and include the units of measure). Including the M-Spike number (like you did) is also helpful when you talk about her progress in the future.
Hope this helps. Again, she should likely start to feel better in the near future and her markers will very likely improve.
Welcome to the forum. Sorry to hear about your Mom. However, the combination of drugs that your Mom is taking (known as VDD) has worked very well for many multiple myeloma patients. VDD coupled with Zometa should also really help with any bone damage and associated pain. So, take heart that your Mom should see improvement soon.
The one piece of advice you will always hear on this forum is to work with a top doctor that specializes specifically in multiple myeloma. I suspect that your Mom's doc may in fact be a multiple myeloma specialist if he is prescribing VDD, but it's always good to also get a second opinion, even if you've already started treatment. If you let us know which city your Mom is being treated in, the folks on this forum can offer up some suggestions on various doctors or institutions to seek out.
BTW, when you talk about free light chain values, its usually good to also include the free light chain ratio in your updates, not just the kappa number (and include the units of measure). Including the M-Spike number (like you did) is also helpful when you talk about her progress in the future.
Hope this helps. Again, she should likely start to feel better in the near future and her markers will very likely improve.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Mother diagnosed last month - all advice welcome
Thank you Multibilly! I will look for the ratio in her paperwork!
Trying to record her side affects. She says the Velcade made her very hungry and she ate more then she has in months! So hopefully she will continue to eat more and stop losing so much weight. She has lost 17 lbs (8 kg) in 1 month.
Trying to record her side affects. She says the Velcade made her very hungry and she ate more then she has in months! So hopefully she will continue to eat more and stop losing so much weight. She has lost 17 lbs (8 kg) in 1 month.
Re: Mother diagnosed last month - all advice welcome
OK, as far as that ratio goes ... Kappa light chain, free high 2750.00 her lambda light chain, free is low 1.30 and the k/l ratio just says comment.
Re: Mother diagnosed last month - all advice welcome
What does the comment say?
If the lambda shows up as low, then the units of measure must be mg/L.
Regardless, it is indeed a high free light chain ratio (2750/1.30 = 2115), unless the comment indicates an issue with the measurement. I bet you will see this dramatically improve in the coming days and weeks.
Take care.
If the lambda shows up as low, then the units of measure must be mg/L.
Regardless, it is indeed a high free light chain ratio (2750/1.30 = 2115), unless the comment indicates an issue with the measurement. I bet you will see this dramatically improve in the coming days and weeks.
Take care.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Mother diagnosed last month - all advice welcome
Lab reports can sometimes be that way. Anyway, a free light chain ratio is easy to calculate ... as you now know.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Mother diagnosed last month - all advice welcome
KLJR-
Multibilly has given you some really good information. Do make sure that a myeloma specialist is on your mother's treatment team. If she has aggressive myeloma this is really important so that she may have access to clinical trials.
Your mother's increased appetite is likely due to the dexamethasone that she is getting. Steroids are notorious for increasing one's appetite, causing increased activity, sleeplessness and mood changes. So, be observant for these things.
I wish your mother, your father and you all the strength you need to work through this latest turn in your family's journey.
Nancy in Phila
Multibilly has given you some really good information. Do make sure that a myeloma specialist is on your mother's treatment team. If she has aggressive myeloma this is really important so that she may have access to clinical trials.
Your mother's increased appetite is likely due to the dexamethasone that she is getting. Steroids are notorious for increasing one's appetite, causing increased activity, sleeplessness and mood changes. So, be observant for these things.
I wish your mother, your father and you all the strength you need to work through this latest turn in your family's journey.
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
Re: Mother diagnosed last month - all advice welcome
Thank you Nancy! I believe him to be a specialist but will make sure!
We start Doxil tomorrow. Does anyone know how long after Doxil you loose your hair? And the doctor told me when I asked about a stem cell transplant that her case was too aggressive and with her age it was not an option.
We start Doxil tomorrow. Does anyone know how long after Doxil you loose your hair? And the doctor told me when I asked about a stem cell transplant that her case was too aggressive and with her age it was not an option.
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