Multibilly,
Thalidomide is used in Europe too. I was given it for my induction, together with Velcade and dex (VTD). The combination allowed me to obtain a VGPR after 6 cycles. The peripheral neuropathy was bad and Lyrica (pregabalin) helped to a point, but after stopping the VTD, the neuropathy subsided and it finally went away.
Forums
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Annamaria - Name: Annamaria
- Who do you know with myeloma?: I am a patient
- When were you/they diagnosed?: April 2012
- Age at diagnosis: 58
Re: Is it multiple myeloma and, if so, how to treat it?
I would say that, if you leave cost considerations out of the discussion, then what Multibilly has said about thalidomide and Revlimid is correct. Thalidomide is believed to cause more peripheral neuropathy than Revlimid, and that neuropathy often seems to be permanent.
In the US more so than other countries, prescribing of myeloma therapies is driven by physician perceptions of what treatments are best in terms of their efficacy and safety. Unlike how it is in most other countries, U.S. physicians don't have to worry about what group of patients a myeloma drug is officially approved to treat -- they can (rather) freely prescribe drugs "off label". Also, U.S. insurance companies and Medicare do not force the use of certain treatments due to cost as much as national and provincial healthcare authorities do in many countries.
So, if you want to get a sense of what most U.S. physicians think about the attractiveness of thalidomide as a frontline myeloma therapy, just look at the recent Beacon poll of what newly diagnosed U.S. myeloma patients are being treated with. Very few U.S. myeloma patients are being treated with thalidomide as part of their initial therapy.
As I've written elsewhere here in the forum, I personally feel that the evidence in favor of Revlimid being more effective than thalidomide is overstated. You can't deny, however, that most U.S. physicians favor Revlimid over thalidomide for newly diagnosed patients.
Joy - For your mother, if a stem cell transplant is not an option, then there is the option for treatment with oral, lower-dose melphalan, or with Cytoxan (cyclophosphamide), both of which are cheap drugs. Remember that high-dose melphalan is the actual therapeutic part of the (autologous) stem cell transplant process. The "transplant" is done just to help the body recover from the impact of the high-dose melphalan on the bone marrow's ability to produce blood cells.
I also agree with what JPC has said about the impact of your mother's treatment so far. Her M-spike has not changed much, as is reflected in her IgG level not having changed much, And her kappa free light chain level suggests that her M-spike may start to go up again (free light chain results tend to be an early-warning system of what is going to happen to a patient's M-spike).
Good luck!
In the US more so than other countries, prescribing of myeloma therapies is driven by physician perceptions of what treatments are best in terms of their efficacy and safety. Unlike how it is in most other countries, U.S. physicians don't have to worry about what group of patients a myeloma drug is officially approved to treat -- they can (rather) freely prescribe drugs "off label". Also, U.S. insurance companies and Medicare do not force the use of certain treatments due to cost as much as national and provincial healthcare authorities do in many countries.
So, if you want to get a sense of what most U.S. physicians think about the attractiveness of thalidomide as a frontline myeloma therapy, just look at the recent Beacon poll of what newly diagnosed U.S. myeloma patients are being treated with. Very few U.S. myeloma patients are being treated with thalidomide as part of their initial therapy.
As I've written elsewhere here in the forum, I personally feel that the evidence in favor of Revlimid being more effective than thalidomide is overstated. You can't deny, however, that most U.S. physicians favor Revlimid over thalidomide for newly diagnosed patients.
Joy - For your mother, if a stem cell transplant is not an option, then there is the option for treatment with oral, lower-dose melphalan, or with Cytoxan (cyclophosphamide), both of which are cheap drugs. Remember that high-dose melphalan is the actual therapeutic part of the (autologous) stem cell transplant process. The "transplant" is done just to help the body recover from the impact of the high-dose melphalan on the bone marrow's ability to produce blood cells.
I also agree with what JPC has said about the impact of your mother's treatment so far. Her M-spike has not changed much, as is reflected in her IgG level not having changed much, And her kappa free light chain level suggests that her M-spike may start to go up again (free light chain results tend to be an early-warning system of what is going to happen to a patient's M-spike).
Good luck!
Re: Is it multiple myeloma and, if so, how to treat it?
Thanks to everybody for your valuable information mostly based on your experiences. I am also studying in this matter days-n-nights. Now I understand the following...
1. Response rate of thalidomide or lenalidomide with dex is poor, and such treatment was done when bortezomib, cyclophosphamide and melphalan was not invented or those were under trial.
2. M-band or M-spike is more important than kappa-lambda. Even till last year, beta2 microglobulin and albumin used to be noticed, rather than M-band or kappa-lambda. Normally treatments said to be responding when M-band or M-spike goes down by 30-50% after 2 months of initial treatment.
3. Weekly poll shows that in most country, first line treatment is bortezomib-cyclophosphamide-dex (VCD). Next prefer regimen is cyclophosphamide-lenalidomide-dex (CRD). Few years back, it was bortezomib-lenalidomide-dex or bortezomib-thalidomide-dex. Mephalan is good for older patients instead of cyclophosphamide.
4. Dosage of all regimens depend upon body surface area, age and CRAB. Thats why multiple myeloma patients must need specialists or group of specialists.
5. The above regimens are from sources and polls and please never become your own doctor, rather, consultation with myeloma specialists are must. Blood tests like CBC, SPEP, sFLC tests are standard and should be done on regular intervals. Bone marrow test and FISH are performed sometimes for the first time, or during SCT.
6. If your CRAB (Calcium in blood, Renal problem, Anemia problem, Bone damage) are more, you will need additional medicines. Also same is true for your side effects, if any. No need to worry, because I have seen medicines are available for most (perhaps all) kind of side effects.
7. One new drug is under trial or may already in market (I am not sure), which is carfilzomib, more powerful than bortezomib, and this is a good news. Hope such good news will come every year until we get a cure for multiple myeloma. That will be an excellent news.
8. I am going with my mom to see a myeloma specialist tomorrow, and let you know about the regimen and tests.
All the best. Cheers.
- Joy
1. Response rate of thalidomide or lenalidomide with dex is poor, and such treatment was done when bortezomib, cyclophosphamide and melphalan was not invented or those were under trial.
2. M-band or M-spike is more important than kappa-lambda. Even till last year, beta2 microglobulin and albumin used to be noticed, rather than M-band or kappa-lambda. Normally treatments said to be responding when M-band or M-spike goes down by 30-50% after 2 months of initial treatment.
3. Weekly poll shows that in most country, first line treatment is bortezomib-cyclophosphamide-dex (VCD). Next prefer regimen is cyclophosphamide-lenalidomide-dex (CRD). Few years back, it was bortezomib-lenalidomide-dex or bortezomib-thalidomide-dex. Mephalan is good for older patients instead of cyclophosphamide.
4. Dosage of all regimens depend upon body surface area, age and CRAB. Thats why multiple myeloma patients must need specialists or group of specialists.
5. The above regimens are from sources and polls and please never become your own doctor, rather, consultation with myeloma specialists are must. Blood tests like CBC, SPEP, sFLC tests are standard and should be done on regular intervals. Bone marrow test and FISH are performed sometimes for the first time, or during SCT.
6. If your CRAB (Calcium in blood, Renal problem, Anemia problem, Bone damage) are more, you will need additional medicines. Also same is true for your side effects, if any. No need to worry, because I have seen medicines are available for most (perhaps all) kind of side effects.
7. One new drug is under trial or may already in market (I am not sure), which is carfilzomib, more powerful than bortezomib, and this is a good news. Hope such good news will come every year until we get a cure for multiple myeloma. That will be an excellent news.
8. I am going with my mom to see a myeloma specialist tomorrow, and let you know about the regimen and tests.
All the best. Cheers.
- 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?
Dear Edna,
Thanks for your opinion, which is great indeed. I confess here that I came to know about our prime ministers (VP Singh and Chandra Sekhar) who died due to multiple myeloma. I only knew one Indian who has multiple myeloma, Mrs Lisa Ray. She is now in Canada and doing better after a stem cell transplant. She is so young.
Yes, in India bortezomib is very expensive, we must need medi-insurance to get some relief. And you are right, in India many older people suffer by anemia, bone damage, kidney damage, and most of them never know what really behind these and die after 2-3 years. Also here clinical trial is not running.
Please tell us about any other celebrities of any country (it can be a new post). From their names, we can see Wikipedia and understand more about the earlier fights with multiple myeloma.
God bless you.
- Joy
Thanks for your opinion, which is great indeed. I confess here that I came to know about our prime ministers (VP Singh and Chandra Sekhar) who died due to multiple myeloma. I only knew one Indian who has multiple myeloma, Mrs Lisa Ray. She is now in Canada and doing better after a stem cell transplant. She is so young.
Yes, in India bortezomib is very expensive, we must need medi-insurance to get some relief. And you are right, in India many older people suffer by anemia, bone damage, kidney damage, and most of them never know what really behind these and die after 2-3 years. Also here clinical trial is not running.
Please tell us about any other celebrities of any country (it can be a new post). From their names, we can see Wikipedia and understand more about the earlier fights with multiple myeloma.
God bless you.
- 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?
Hello, Joy:
Thinking a little bit about your economic concerns, some of the older drugs may be a bit more accessible, as the new ones still under patent are more expensive. In your mother's case, if you added Velcade (a proteasome inhibitor), you would be almost at what we call in the US "standard of care". Standard of care, for example, would be Revlimid, Velcade, and dexamethasone (RVD) (not the only one). Thalidomide, however, is in the same class of Revlimid, and is probably somewhat less effective than Revlimid, but in the ballpark (and with somewhat harsher side effects in some cases). Thalidomide, however, is older and, although I do not know the specific price, I am guessing is much less expensive.
An older treatment line before the newer drugs came online was "VTD-PACE". This has 7 drugs The V is Velcade, however, all of the other drugs are presumably cheaper. Here is a link to some information about it:
https://myelomabeacon.org/forum/vdt-pace-t112.html
You can discuss this, preferably with a myeloma specialist, who would have a good idea of how to sequence and dose the medicines that might be available. Another med that is used (you can google the CarBIRD regimen) is Biaxin (clarithromycin). Biaxin is an older antibiotic that I presume is very cheap.
There are organizations that help out in certain hardship cases economically. The drug companies themselves sometimes do this. If you can supplement your mother's treatment with something that helps for now, you may be able to swing the Velcade down the road.
Thinking a little bit about your economic concerns, some of the older drugs may be a bit more accessible, as the new ones still under patent are more expensive. In your mother's case, if you added Velcade (a proteasome inhibitor), you would be almost at what we call in the US "standard of care". Standard of care, for example, would be Revlimid, Velcade, and dexamethasone (RVD) (not the only one). Thalidomide, however, is in the same class of Revlimid, and is probably somewhat less effective than Revlimid, but in the ballpark (and with somewhat harsher side effects in some cases). Thalidomide, however, is older and, although I do not know the specific price, I am guessing is much less expensive.
An older treatment line before the newer drugs came online was "VTD-PACE". This has 7 drugs The V is Velcade, however, all of the other drugs are presumably cheaper. Here is a link to some information about it:
https://myelomabeacon.org/forum/vdt-pace-t112.html
You can discuss this, preferably with a myeloma specialist, who would have a good idea of how to sequence and dose the medicines that might be available. Another med that is used (you can google the CarBIRD regimen) is Biaxin (clarithromycin). Biaxin is an older antibiotic that I presume is very cheap.
There are organizations that help out in certain hardship cases economically. The drug companies themselves sometimes do this. If you can supplement your mother's treatment with something that helps for now, you may be able to swing the Velcade down the road.
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JPC - Name: JPC
Re: Is it multiple myeloma and, if so, how to treat it?
Hi Joy. I am a myeloma patient in India (diagnosed Nov 2013).
Just so you are aware, there are generic versions of bortezomib available in India (called Myzom, Borviz etc) which are considerably cheaper than the branded Velcade. Also, there is generic lenalidomide available as well (called Lenalid).
Good luck !
Robin
Just so you are aware, there are generic versions of bortezomib available in India (called Myzom, Borviz etc) which are considerably cheaper than the branded Velcade. Also, there is generic lenalidomide available as well (called Lenalid).
Good luck !
Robin
Re: Is it multiple myeloma and, if so, how to treat it?
Dear Friends,
This week, I am with lab tests and hemato-onco specialists. They formed a group and finally prescribed the treatment plan for my mom...
It is called VCd in North America or CyBorD in other countries. A combination of drug, chemo, and steroid which is presently the most popular initial treatment as per the weekly polls:
https://myelomabeacon.org/forum/weekly-polls.html
Bortezomib is the most expensive among the drugs, but its also very effective as doctors say. They also say we must not try several regimens when we have this powerful combination in hand, because trying many drugs for response will make the cancer cells more resistant to treat. The dose of this regimen depends on the body surface area (per square meter basis).
So, if you have any experience (pros-cons) so far with this regimen, kindly share. Also I want to know, if this regimen cannot get response, what will be next? Any new information, please share.
Thanks to everybody,
- Joy
This week, I am with lab tests and hemato-onco specialists. They formed a group and finally prescribed the treatment plan for my mom...
It is called VCd in North America or CyBorD in other countries. A combination of drug, chemo, and steroid which is presently the most popular initial treatment as per the weekly polls:
https://myelomabeacon.org/forum/weekly-polls.html
Bortezomib is the most expensive among the drugs, but its also very effective as doctors say. They also say we must not try several regimens when we have this powerful combination in hand, because trying many drugs for response will make the cancer cells more resistant to treat. The dose of this regimen depends on the body surface area (per square meter basis).
So, if you have any experience (pros-cons) so far with this regimen, kindly share. Also I want to know, if this regimen cannot get response, what will be next? Any new information, please share.
Thanks to everybody,
- 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?
Dear Joy,
Sorry to hear about your Mother. I pray to God for her fast recovery.
My mother is also under multiple myeloma treatment since last one and half year. Doctors has started with thalidomide + dexamethasone (TD), but response was very slow, now they replaced it with Velcade and it is quite effective. Please consult some oncologist nearby and take further action after consultation.
Wishing your mother speedy recovery and best of health.
Best regards,
Vikas Sood
Sorry to hear about your Mother. I pray to God for her fast recovery.
My mother is also under multiple myeloma treatment since last one and half year. Doctors has started with thalidomide + dexamethasone (TD), but response was very slow, now they replaced it with Velcade and it is quite effective. Please consult some oncologist nearby and take further action after consultation.
Wishing your mother speedy recovery and best of health.
Best regards,
Vikas Sood
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Vikas Sood
Re: Is it multiple myeloma and, if so, how to treat it?
Joy:
Good luck to your mother. CyBorD is one of the "standard of care" regimens that is frequently used, for example at the Mayo Clinic, which is a world leading center. Hopefully she and you are now on the right track. Regards, JPC
Good luck to your mother. CyBorD is one of the "standard of care" regimens that is frequently used, for example at the Mayo Clinic, which is a world leading center. Hopefully she and you are now on the right track. Regards, JPC
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JPC - Name: JPC
Re: Is it multiple myeloma and, if so, how to treat it?
Hello everybody !!
I am back after a few months of my mom's treatment. Her oncologist prescribed her VCD (CyBorD) with lower dose for 3-4 cycles. Also there are supportive medicines like Zoledronic Acid for bones.
When we worried about the painfulness of the treatment and its side effects, he told us that we can wait few more months to start this first line therapy, but the Injection for bone (Zoledronic Acid) must be continued (once in a month).
Now since last 4 months, she is under homeopathy treatment, which is based upon boosting her immune system in order to fight and destroy cancer cells and their reproduction. We are also continuing the injections prescribe by her oncologist.
The latest SPEP report shows a 25% reduced M Band in gamma region, but 2-3% increased M Band in alpha2 regrion. Also there is better blood count (CBC report).
The only problem is the pain in hips are little more and regular than before, and the Beta2 Microglobulins (B2M) are around 4.7 (before it was 3.3 when diagnosed first time). Homeo doctor is happy to see the reports, and assures us about the possibility of total recovery within few months.
I am now worried about higher level of B2M which may damage the Kidneys soon, so we can see the Homeo for another 2-3 months, and then we may start the VCD or CyBorD.
One last thing today, I think that the better way to control multiple myeloma by using our own immune system, rather just killing the tumour or cancer cells. I heard about a vaccine (or may be a virus) that can fight with multiple myeloma cells parallely with the immune system and will keep us in total remission forever... its under trial now... can be a very good news.
All the best guys !!!
Joy
I am back after a few months of my mom's treatment. Her oncologist prescribed her VCD (CyBorD) with lower dose for 3-4 cycles. Also there are supportive medicines like Zoledronic Acid for bones.
When we worried about the painfulness of the treatment and its side effects, he told us that we can wait few more months to start this first line therapy, but the Injection for bone (Zoledronic Acid) must be continued (once in a month).
Now since last 4 months, she is under homeopathy treatment, which is based upon boosting her immune system in order to fight and destroy cancer cells and their reproduction. We are also continuing the injections prescribe by her oncologist.
The latest SPEP report shows a 25% reduced M Band in gamma region, but 2-3% increased M Band in alpha2 regrion. Also there is better blood count (CBC report).
The only problem is the pain in hips are little more and regular than before, and the Beta2 Microglobulins (B2M) are around 4.7 (before it was 3.3 when diagnosed first time). Homeo doctor is happy to see the reports, and assures us about the possibility of total recovery within few months.
I am now worried about higher level of B2M which may damage the Kidneys soon, so we can see the Homeo for another 2-3 months, and then we may start the VCD or CyBorD.
One last thing today, I think that the better way to control multiple myeloma by using our own immune system, rather just killing the tumour or cancer cells. I heard about a vaccine (or may be a virus) that can fight with multiple myeloma cells parallely with the immune system and will keep us in total remission forever... its under trial now... can be a very good news.
All the best guys !!!
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
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