My mother (age 64) was recently diagnosed with symptomatic myeloma (in March 2015). She is on 100 mg thalidomide daily with 40 mg dex weekly for 3 months (now June 2015). Our doctor is a hematologist, but the hospital is not an exclusive for cancer treatment.
There are tolerable side effects like constipation, fatigue and peripheral neuropathy. Diet contains more fruits, vegetables and proteins than before. After 3 months, the old and new reports can be compared as.
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Starting of March-2015
HB = 5.4 (low)
RBC = 2.31 (low)
WBC = 4.80 (norm)
Platelet = 250 (norm)
CRAB = C No, R No, A Yes, B No
Mature Plasma Cell in BM = 15%
B2 Microglobulin = 3.758 mg/ml (high)
Serum F Kappa = 4360 mg/dl (high)
Serum F Lamda = 69.2 mg/dl (low)
K. / L. Ratio = 63.001
Serum Albumin = 3.6 g/dl (norm)
Serum Globuln = 6.8 g/dl (high)
A. / G. Ratio = 0.54
IgA = 15.6 mg/dl (low)
IgM = 25.9 mg/dl (low)
IgG = 4580 mg/dl (high)
M Band = 4.1 g/dl (IgG Kappa type)
----------------------------------
26-March-2015
HB = 9.0 (low)
RBC = 2.85 (low)
WBC = 5.08 (norm)
Platelet = 190 (norm)
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28-April-2015
HB = 6.9 (low)
RBC = 2.17 (low)
WBC = 3.70 (low)
Platelet = 270 (norm)
----------------------------------
22-June-2015
HB = 7.9 (low)
RBC = 2.64 (low)
WBC = 5.59 (norm)
Platelet = 423 (high)
CRAB = C No, R No, A Yes, B No
Fasting B. Glucose = 159 mg/dl (high)
B2 Microglobulin = Not Checked
Serum Albumin = 2.6 g/dl (low)
Serum Globuln = 5.9 g/dl (high)
A. / G. Ratio = 0.44
Serum F Kappa = 6100 mg/dl (high)
Serum F Lamda = 68.2 mg/dl (low)
K. / L. Ratio = 89.443
IgA = 35.6 mg/dl (low)
IgM = 24.3 mg/dl (low)
IgG = 4130 mg/dl (high)
M Band = 3.6 g/dl (IgG Kappa type)
----------------------------------
My question is...
1. Is it really multiple myeloma? If not, what is it?
2. Is that regimen working (thalidomide 100 mg daily + dex 40 mg weekly) ?
3. If not working, what could be other or better options (age 64, weight 48 kg, height 143 cm) ?
Many thanks for reading and wish you all a happy and successful life.
Joy, India
Forums
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Joy Majumdar - Name: Joy Majumdar
- Who do you know with myeloma?: Kalpana Majumdar
- When were you/they diagnosed?: March 2015
- Age at diagnosis: 64
Re: Is it multiple myeloma and, if so, how to treat it?
Hi Joy,
Sorry to hear about your mother's situation. These lab results seem consistent with multiple myeloma to me (but I'm not a doctor). But one really needs a bone marrow biopsy to confirm if it is multiple myeloma.
Your mom is indeed quite anemic, so I hope that multiple myeloma treatment will help her.
But what concerns me is that your mom is on thalidomide. Thalidomide is an older multiple myeloma treatment that has been largely replaced by newer drugs such as Revlimid (lenalidomide) in many countries. Also, in many cases, newer multiple multiple myeloma treatments involve the use of three drugs in combination such as Revlimid, Velcade (bortezomib) and dexamethasone to treat new cases of multiple myeloma. Several other drug combinations are available and the choice of which ones to use in part depends on your mother's specific situation and genetic test results from the bone marrow biopsy. A myeloma specialist is best suited to make the recommendation on which drugs to use in a specific situation.
My understanding is that many of these newer multiple myeloma drugs are available in India, so I am surprised that your mom is on thalidomide (which can have serious side effects that includes permanent peripheral neuropathy and has been shown not to be quite as effective as some of the newer drugs on the market).
Below are a couple of links to treatment centers in India where you might find specialists that would be more familiar with the newer drugs that could be prescribed to treat your mother's condition.
https://myelomabeacon.org/forum/multiple-myeloma-specialist-india-t3168.html
https://myelomabeacon.org/forum/stem-cell-transplant-india-t3167.html?hilit=India
I hope this helps a bit.
Sorry to hear about your mother's situation. These lab results seem consistent with multiple myeloma to me (but I'm not a doctor). But one really needs a bone marrow biopsy to confirm if it is multiple myeloma.
Your mom is indeed quite anemic, so I hope that multiple myeloma treatment will help her.
But what concerns me is that your mom is on thalidomide. Thalidomide is an older multiple myeloma treatment that has been largely replaced by newer drugs such as Revlimid (lenalidomide) in many countries. Also, in many cases, newer multiple multiple myeloma treatments involve the use of three drugs in combination such as Revlimid, Velcade (bortezomib) and dexamethasone to treat new cases of multiple myeloma. Several other drug combinations are available and the choice of which ones to use in part depends on your mother's specific situation and genetic test results from the bone marrow biopsy. A myeloma specialist is best suited to make the recommendation on which drugs to use in a specific situation.
My understanding is that many of these newer multiple myeloma drugs are available in India, so I am surprised that your mom is on thalidomide (which can have serious side effects that includes permanent peripheral neuropathy and has been shown not to be quite as effective as some of the newer drugs on the market).
Below are a couple of links to treatment centers in India where you might find specialists that would be more familiar with the newer drugs that could be prescribed to treat your mother's condition.
https://myelomabeacon.org/forum/multiple-myeloma-specialist-india-t3168.html
https://myelomabeacon.org/forum/stem-cell-transplant-india-t3167.html?hilit=India
I hope this helps a bit.
Last edited by Multibilly on Sat Jun 27, 2015 10:56 am, edited 3 times in total.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Is it multiple myeloma and, if so, how to treat it?
Hello Joy:
I read your post, I am not a doctor and what I am about to write should not be considered medical advice in any way. However, based on your mother's M spike and hemoglobin, there is almost no doubt that this is multiple myeloma. She would meet the "A" element of the CRAB criteria mentioned in the literature. Very rarely, there is an M spike and anemia, but something else causes the anemia, and when that is fixed, it goes back to the "pre-myeloma" stage. That however, is rare. In fact the hemoglobin reads "low", but it should read "Very, Very low". In the States, some doctors go right to transfusions at 8, and some at 7 (you did not mention about that issue).
Again, not a medical opinion, but basically following the literature, I note that your mother is responding, However, after 3 rounds of induction, in the States, a decent response with the best medicines would be a 50% reduction in the M-spike, which your mother did not yet obtain.
If possible, try and get hooked up with a myeloma specialist. He or she may decide that adding another drug (e.g., Velcade) may be warranted.
On the good side, she is heading in the right direction (although slowly), and if it takes a little bit of time to get a better regimen, keeping up with the TD for a period of time might be acceptable (when it stops working, that is another issue). Good luck
I read your post, I am not a doctor and what I am about to write should not be considered medical advice in any way. However, based on your mother's M spike and hemoglobin, there is almost no doubt that this is multiple myeloma. She would meet the "A" element of the CRAB criteria mentioned in the literature. Very rarely, there is an M spike and anemia, but something else causes the anemia, and when that is fixed, it goes back to the "pre-myeloma" stage. That however, is rare. In fact the hemoglobin reads "low", but it should read "Very, Very low". In the States, some doctors go right to transfusions at 8, and some at 7 (you did not mention about that issue).
Again, not a medical opinion, but basically following the literature, I note that your mother is responding, However, after 3 rounds of induction, in the States, a decent response with the best medicines would be a 50% reduction in the M-spike, which your mother did not yet obtain.
If possible, try and get hooked up with a myeloma specialist. He or she may decide that adding another drug (e.g., Velcade) may be warranted.
On the good side, she is heading in the right direction (although slowly), and if it takes a little bit of time to get a better regimen, keeping up with the TD for a period of time might be acceptable (when it stops working, that is another issue). Good luck
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JPC - Name: JPC
Re: Is it multiple myeloma and, if so, how to treat it?
Hello, again Joy.
I did not do a deep dive into the numbers because I am not qualified to look at them in all respects, However, I took another look at them, and the kappa-lambda ratio should be going down, not up. This suggests you may want to get to the specialist sooner rather than later. Also, Multibilly has done a lot of research, so I think he was more correct than myself on doing this sooner rather than later.
Good luck again.
I did not do a deep dive into the numbers because I am not qualified to look at them in all respects, However, I took another look at them, and the kappa-lambda ratio should be going down, not up. This suggests you may want to get to the specialist sooner rather than later. Also, Multibilly has done a lot of research, so I think he was more correct than myself on doing this sooner rather than later.
Good luck again.
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JPC - Name: JPC
Re: Is it multiple myeloma and, if so, how to treat it?
Dear Multibilly,
Many thanks for the links you have mentioned. It will be helpful to others also. I will followup with one of these specialists who is near to me, and will inform everybody though this post.
My main concern is if TD is responding slowly, then we can add another drug (probably bortezomib or carfilzomib) with it OR increase the dose of thalidomide from 100 mg to 200 mg (which is normal, I bet). Let me see what a specialist recommends.
Now my question is...
Do you believe that if TD is working slowly, then we must stick on it until it get resistance ?
Because, if I am right, there are few combinations that can be suitable for a particular patient, and hence, we should keep the higher regimen for future multiple myeloma issues.
If I am wrong, then there is no higher or lower regimen, all regimens are different and may work if any one fails, and I must move from this 2 drug (TD) to best 3 drug, such as Velcade, cyclophosphamide, dexamethasone (VCD) or carfilzomib, Revlimid, and dexamethasone (CRD) regimen.
Please put your opinions here. I just need your thoughts from your experience, so that it can be a good information or knowledge for new patients studying here.
Many thanks everyone.
- Joy
Many thanks for the links you have mentioned. It will be helpful to others also. I will followup with one of these specialists who is near to me, and will inform everybody though this post.
My main concern is if TD is responding slowly, then we can add another drug (probably bortezomib or carfilzomib) with it OR increase the dose of thalidomide from 100 mg to 200 mg (which is normal, I bet). Let me see what a specialist recommends.
Now my question is...
Do you believe that if TD is working slowly, then we must stick on it until it get resistance ?
Because, if I am right, there are few combinations that can be suitable for a particular patient, and hence, we should keep the higher regimen for future multiple myeloma issues.
If I am wrong, then there is no higher or lower regimen, all regimens are different and may work if any one fails, and I must move from this 2 drug (TD) to best 3 drug, such as Velcade, cyclophosphamide, dexamethasone (VCD) or carfilzomib, Revlimid, and dexamethasone (CRD) regimen.
Please put your opinions here. I just need your thoughts from your experience, so that it can be a good information or knowledge for new patients studying here.
Many thanks everyone.
- Joy
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Joy Majumdar - Name: Joy Majumdar
- Who do you know with myeloma?: Kalpana Majumdar
- When were you/they diagnosed?: March 2015
- Age at diagnosis: 64
Re: Is it multiple myeloma and, if so, how to treat it?
Thank you JPC for your last 2 replies. I understand now from these facts that...
Hgb is too low as before, M Band is little down which is good, but kappa is high, after 3 months of TD regimen. So what could be done?
I am going to see a multiple myeloma specialist soon, the locations Mumbai, Delhi, Bangalore are very far from my city. I think doctor will drop TD. So, what's next in general, any idea??
How come kappa going up, where M Band goes down, I still could not understand. multiple myeloma is making me crazy.
Anyway, hope everybody will do better because of more drugs. How is your health now Mr JPC? and whats your real name?
- Joy
Hgb is too low as before, M Band is little down which is good, but kappa is high, after 3 months of TD regimen. So what could be done?
I am going to see a multiple myeloma specialist soon, the locations Mumbai, Delhi, Bangalore are very far from my city. I think doctor will drop TD. So, what's next in general, any idea??
How come kappa going up, where M Band goes down, I still could not understand. multiple myeloma is making me crazy.
Anyway, hope everybody will do better because of more drugs. How is your health now Mr JPC? and whats your real name?
- Joy
-
Joy Majumdar - Name: Joy Majumdar
- Who do you know with myeloma?: Kalpana Majumdar
- When were you/they diagnosed?: March 2015
- Age at diagnosis: 64
Re: Is it multiple myeloma and, if so, how to treat it?
Joy,
Again, I'm not a doctor and be clear that I have not had multiple myeloma treatment myself since I am only smoldering.
But I would personally not continue with thalidomide even if it were working for me, unless there were no alternative in my country. Many folks on this forum suffer from permanent peripheral neuropathy (PN). It is not pleasant and I would do most anything possible to avoid developing it in the first place. The things I enjoy doing in life (backpacking, working on old cars, etc) would be very hard to do if I had PN.
So, for that reason alone, I would investigate getting on to a different drug or drugs.
But be clear that this is my personal opinion and there are likely other medical considerations to take into account here.
Again, I'm not a doctor and be clear that I have not had multiple myeloma treatment myself since I am only smoldering.
But I would personally not continue with thalidomide even if it were working for me, unless there were no alternative in my country. Many folks on this forum suffer from permanent peripheral neuropathy (PN). It is not pleasant and I would do most anything possible to avoid developing it in the first place. The things I enjoy doing in life (backpacking, working on old cars, etc) would be very hard to do if I had PN.
So, for that reason alone, I would investigate getting on to a different drug or drugs.
But be clear that this is my personal opinion and there are likely other medical considerations to take into account here.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Is it multiple myeloma and, if so, how to treat it?
Yes Multibilly, I agree with you.
I don't like TD regimen at all, but its much cheaper because most Indians are poor or middle class. Even in the developed countries, 3 drug treatment is killing financially.
I am now searching in the internet about "The best initial regimen could be", and "That is also cheaper". For me, bortezomib-based regimen is very expensive and painful indeed. If doctor prescribe, I cannot afford and my mom will cry when she will see the long IV cycles. But any other novel drugs are not expensive here and also available in oral form (PO). Even, once my mom gets remission, I cannot afford for stem cell transplant, I may need to sell my house.
I never heard about such disease in my childhood ... omg. Hope we will get a curable solution soon.
I don't like TD regimen at all, but its much cheaper because most Indians are poor or middle class. Even in the developed countries, 3 drug treatment is killing financially.
I am now searching in the internet about "The best initial regimen could be", and "That is also cheaper". For me, bortezomib-based regimen is very expensive and painful indeed. If doctor prescribe, I cannot afford and my mom will cry when she will see the long IV cycles. But any other novel drugs are not expensive here and also available in oral form (PO). Even, once my mom gets remission, I cannot afford for stem cell transplant, I may need to sell my house.
I never heard about such disease in my childhood ... omg. Hope we will get a curable solution soon.
-
Joy Majumdar - Name: Joy Majumdar
- Who do you know with myeloma?: Kalpana Majumdar
- When were you/they diagnosed?: March 2015
- Age at diagnosis: 64
Re: Is it multiple myeloma and, if so, how to treat it?
Joy
You might like to know two of India's prime minsters, VP Singh and Chandra Shekar, had multiple myeloma. This indeed is unusual, but in India I suspect many poor people never get accurately diagnosed, let alone treated, which probably gives a lower rate of this disease than may be the actual case.
The novel drugs are used upfront by myeloma specialists in India, but, yes, treatment is very expensive, unless you have health insurance already to cover some costs. Which drugs are used in any country, my specialist told me, were based on availability and no doubt cost to the public purse in a national government-funded system. Only the rich have choices, or if clinical trials are available then this is another route. I think in India clinical trials for myeloma are not running as far as I can gather.
Although Multibilly is not supportive of use of thalidomide,cyclophosphamide + thalidomide + dexamethasone (CTD) is standard first line treatment for myeloma for many in the UK, because with stem cell transplant this has been considered effective in terms of cost and outcome. Yes, side effects are a problem, and for each person the side effects will vary.
I wish you well in getting expert help for your mother.
Edna.
You might like to know two of India's prime minsters, VP Singh and Chandra Shekar, had multiple myeloma. This indeed is unusual, but in India I suspect many poor people never get accurately diagnosed, let alone treated, which probably gives a lower rate of this disease than may be the actual case.
The novel drugs are used upfront by myeloma specialists in India, but, yes, treatment is very expensive, unless you have health insurance already to cover some costs. Which drugs are used in any country, my specialist told me, were based on availability and no doubt cost to the public purse in a national government-funded system. Only the rich have choices, or if clinical trials are available then this is another route. I think in India clinical trials for myeloma are not running as far as I can gather.
Although Multibilly is not supportive of use of thalidomide,cyclophosphamide + thalidomide + dexamethasone (CTD) is standard first line treatment for myeloma for many in the UK, because with stem cell transplant this has been considered effective in terms of cost and outcome. Yes, side effects are a problem, and for each person the side effects will vary.
I wish you well in getting expert help for your mother.
Edna.
Re: Is it multiple myeloma and, if so, how to treat it?
Edna,
Thanks for your follow-up on this thread. It's often challenging for me to properly keep in mind all of the economic considerations and specific country-by-country policies regarding multiple myeloma treatments. Your comments reminded me of that reality.
Thanks for your follow-up on this thread. It's often challenging for me to properly keep in mind all of the economic considerations and specific country-by-country policies regarding multiple myeloma treatments. Your comments reminded me of that reality.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
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