Hi my father is in China and he has been diagnosed with multiple myeloma in last December. He had difficulties of walking in November, and finally lost feelings below his waist in early December. He was sent to bone department and a surgery was performed to put bone screws and plates into his body to give him enough support. The examination of living tissue from the surgery has confirmed that he has multiple myeloma.
After this, he was transferred to blood department and started chemotherapy immediately. dexamethasone is used for his first four chemotherapy and it helps. However, recently, during his 5th chemotherapy, the blood test shows lga is higher than normal. So Dr in china is thinking of changing his chemotherapy plan. There are two options:
(1) use bortezomib (Velcade) in chemotherapy
(2) keep using dexamethasone and start taking lenalidomide (Revlimid)
Dr is strong suggest to take plan 1. And he is afraid of missing the best time to use bortezomib.
However, now the problem is all the insurance in China does not cover the cost of bortezomib. And the cost for one dose is 13,000 RMB which is close to 2,120 US dollars. And each therapy needs 4 dose. The cost is so high and my family can not afford it. I checked the website here in States and the average cost is about 700 US dollars. In some Chinese website, we could find they sell bortezomib for around 800 dollars. However, lots of them are fake website and all they provide is fake medicine which can't be trusted. Does any one know a trust website that we may buy bortezomib?
Also, we need buy lenalidomide for him. If anyone knows a website which sell true medicine and not require a prescription or accept international prescription, may you let me know? All the effective medicine are sold 3-5 times higher price than the price here. Also no insurance covers it. Your help is fully appreciated.
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Re: Help is needed for my father
We're sorry to hear about the situation with your father, molly_china.
We'll let the other members of the forum share their thoughts related to the treatment options your father is considering.
One thing we will note, however, is that you may want to suggest to your father that he explore if there are any clinical trials going on in China in which he might be able to participate. Generally speaking, patients do not have to cover the cost of drugs they receive during a clinical trial.
As to help with the cost of the drugs your father might receive, you can find links here at the Beacon,
https://myelomabeacon.org/links/drug-reimbursement-information/
for the various manufacturers who sell myeloma treatments in the United States and abroad. Most of the sites you'll see listed are oriented to patients in the United States, but the people you'll reach at the various hotlines will probably be able to connect you with sources of assistance for patients overseas.
As for unofficial, grey-market or black-market Internet sources of anti-myeloma therapies, The Beacon has a policy of not permitting links to such sites.
Best of luck to you and your father,
The Myeloma Beacon Staff
We'll let the other members of the forum share their thoughts related to the treatment options your father is considering.
One thing we will note, however, is that you may want to suggest to your father that he explore if there are any clinical trials going on in China in which he might be able to participate. Generally speaking, patients do not have to cover the cost of drugs they receive during a clinical trial.
As to help with the cost of the drugs your father might receive, you can find links here at the Beacon,
https://myelomabeacon.org/links/drug-reimbursement-information/
for the various manufacturers who sell myeloma treatments in the United States and abroad. Most of the sites you'll see listed are oriented to patients in the United States, but the people you'll reach at the various hotlines will probably be able to connect you with sources of assistance for patients overseas.
As for unofficial, grey-market or black-market Internet sources of anti-myeloma therapies, The Beacon has a policy of not permitting links to such sites.
Best of luck to you and your father,
The Myeloma Beacon Staff
Re: Help is needed for my father
Hello Molly
I am sorry to hear of your fathers dilemma. Virtually all myeloma drugs are expensive and without insurance to pay for them the vast majority of patients could not be treated. In the majority of cases of myeloma bortezomib (Velcade) is not needed as the front line therapy. If your father has the cytogenetic finding on FISH (fluorescent in situ hybridization) of translocation t(4;14) then bortezomib would be ideal. Otherwise there are many other treatments that could be used with good results. In much of the world thalidomide is the primary immunomodulatory agent because lenalidomide is too expensive. When combined with melphalan in the melphalan + prednisone + thalidomide in the MPT regimen it is highly active and improves survival. How old is your father? Do you know if cytogenetics( FISH) was performed on his diagnostic bone marrow testing?
I am sorry to hear of your fathers dilemma. Virtually all myeloma drugs are expensive and without insurance to pay for them the vast majority of patients could not be treated. In the majority of cases of myeloma bortezomib (Velcade) is not needed as the front line therapy. If your father has the cytogenetic finding on FISH (fluorescent in situ hybridization) of translocation t(4;14) then bortezomib would be ideal. Otherwise there are many other treatments that could be used with good results. In much of the world thalidomide is the primary immunomodulatory agent because lenalidomide is too expensive. When combined with melphalan in the melphalan + prednisone + thalidomide in the MPT regimen it is highly active and improves survival. How old is your father? Do you know if cytogenetics( FISH) was performed on his diagnostic bone marrow testing?
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Dr. Edward Libby - Name: Edward Libby, M.D.
Beacon Medical Advisor
Re: Help is needed for my father
Dr. Libby,
Thank you so much for your reply. As what I know, my father has taken Thalidomide for couple of months. It used to be very effective. But his lga rises up to 530 now and Dr thinks that Thalidomide is not enough for him. I will check with his Dr about MPT regimen and see if they still have other treatment except taking bortezomib or thalidomide.
My father is 57 years old now. From the medical tests, his heart, kidney, and others are all functioning well.
Many thanks to you!
Molly
Dr. Edward Libby wrote:
> Hello Molly
> I am sorry to hear of your fathers dilemma. Virtually all myeloma drugs are
> expensive and without insurance to pay for them the vast majority of
> patients could not be treated. In the majority of cases of myeloma
> bortezomib is not needed as the front line therapy. If your father has the
> cytogenetic finding on FISH (fluorescent in situ hybridization) of
> translocation t(4;14) then bortezomib would be ideal. Otherwise there are
> many other treatments that could be used with good results. In much of the
> world thalidomide is the primary immunomodulatory agent because
> lenalidomide is too expensive. When combined with melphalan in the
> melphalan + prednisone + thalidomide in the MPT regimen it is highly active
> and improves survival. How old is your father? Do you know if cytogenetics(
> FISH) was peformed on his diagnostic bone marrow testing?
Thank you so much for your reply. As what I know, my father has taken Thalidomide for couple of months. It used to be very effective. But his lga rises up to 530 now and Dr thinks that Thalidomide is not enough for him. I will check with his Dr about MPT regimen and see if they still have other treatment except taking bortezomib or thalidomide.
My father is 57 years old now. From the medical tests, his heart, kidney, and others are all functioning well.
Many thanks to you!
Molly
Dr. Edward Libby wrote:
> Hello Molly
> I am sorry to hear of your fathers dilemma. Virtually all myeloma drugs are
> expensive and without insurance to pay for them the vast majority of
> patients could not be treated. In the majority of cases of myeloma
> bortezomib is not needed as the front line therapy. If your father has the
> cytogenetic finding on FISH (fluorescent in situ hybridization) of
> translocation t(4;14) then bortezomib would be ideal. Otherwise there are
> many other treatments that could be used with good results. In much of the
> world thalidomide is the primary immunomodulatory agent because
> lenalidomide is too expensive. When combined with melphalan in the
> melphalan + prednisone + thalidomide in the MPT regimen it is highly active
> and improves survival. How old is your father? Do you know if cytogenetics(
> FISH) was peformed on his diagnostic bone marrow testing?
Re: Help is needed for my father
Dear Beacon Staff,
Thank you so much for your reply. The information you provide is very helpful and I have learned a lot through this website. Unfortunately, in China, clinic trail is still a new thing and there is no fully-designed clinic trails for multiple myeloma right now. I will check with my father's Dr and see if there is one which is missed.
Really appreciate your help,
Molly
Beacon Staff wrote:
> We're sorry to hear about the situation with your father, molly_china.
>
> We'll let the other members of the forum share their thoughts related to
> the treatment options your father is considering.
>
> One thing we will note, however, is that you may want to suggest to your
> father that he explore if there are any clinical trials going on in China
> in which he might be able to participate. Generally speaking, patients do
> not have to cover the cost of drugs they receive during a clinical trial.
>
> As to help with the cost of the drugs your father might receive, you can
> find links here at the Beacon,
>
> https://myelomabeacon.org/links/drug-reimbursement-information/
>
> for the various manufacturers who sell myeloma treatments in the United
> States and abroad. Most of the sites you'll see listed are oriented to
> patients in the United States, but the people you'll reach at the various
> hotlines will probably be able to connect you with sources of assistance
> for patients overseas.
>
> As for unofficial, grey-market or black-market Internet sources of
> anti-myeloma therapies, The Beacon has a policy of not permitting links to
> such sites.
>
> Best of luck to you and your father,
>
> The Myeloma Beacon Staff
Thank you so much for your reply. The information you provide is very helpful and I have learned a lot through this website. Unfortunately, in China, clinic trail is still a new thing and there is no fully-designed clinic trails for multiple myeloma right now. I will check with my father's Dr and see if there is one which is missed.
Really appreciate your help,
Molly
Beacon Staff wrote:
> We're sorry to hear about the situation with your father, molly_china.
>
> We'll let the other members of the forum share their thoughts related to
> the treatment options your father is considering.
>
> One thing we will note, however, is that you may want to suggest to your
> father that he explore if there are any clinical trials going on in China
> in which he might be able to participate. Generally speaking, patients do
> not have to cover the cost of drugs they receive during a clinical trial.
>
> As to help with the cost of the drugs your father might receive, you can
> find links here at the Beacon,
>
> https://myelomabeacon.org/links/drug-reimbursement-information/
>
> for the various manufacturers who sell myeloma treatments in the United
> States and abroad. Most of the sites you'll see listed are oriented to
> patients in the United States, but the people you'll reach at the various
> hotlines will probably be able to connect you with sources of assistance
> for patients overseas.
>
> As for unofficial, grey-market or black-market Internet sources of
> anti-myeloma therapies, The Beacon has a policy of not permitting links to
> such sites.
>
> Best of luck to you and your father,
>
> The Myeloma Beacon Staff
Re: Help is needed for my father
Glad we could be of help, molly_china.
Just so you know, there are, in fact, a number of myeloma-related clinical trials ongoing, or about to start, in China. Here is a partial list from clinicaltrials.gov:
http://1.usa.gov/12xdIfH
We imagine that there may even be more trials taking place in China, but which are not listed at clinicaltrials.gov because the investigators in China did not feel it important to list the trials at clinicaltrials.gov. You may want to find out if there is a website that focuses on listing clinical trials being performed in China.
Just so you know, there are, in fact, a number of myeloma-related clinical trials ongoing, or about to start, in China. Here is a partial list from clinicaltrials.gov:
http://1.usa.gov/12xdIfH
We imagine that there may even be more trials taking place in China, but which are not listed at clinicaltrials.gov because the investigators in China did not feel it important to list the trials at clinicaltrials.gov. You may want to find out if there is a website that focuses on listing clinical trials being performed in China.
Re: Help is needed for my father
Hello again Molly,
Melphalan is one of the few drugs for myeloma that is inexpensive. Melphalan has been used for 40 years for myeloma. The combination... MPT...was a significant advance for the treatment of myeloma in the past decade. So adding melphalan to thalidomide and steroids could potentially signficantly improve his response. Is there a possibiblity of stem cell transplant in China for your father? This would often be used in the US for someone less than 70 years of age.
Melphalan is one of the few drugs for myeloma that is inexpensive. Melphalan has been used for 40 years for myeloma. The combination... MPT...was a significant advance for the treatment of myeloma in the past decade. So adding melphalan to thalidomide and steroids could potentially signficantly improve his response. Is there a possibiblity of stem cell transplant in China for your father? This would often be used in the US for someone less than 70 years of age.
-
Dr. Edward Libby - Name: Edward Libby, M.D.
Beacon Medical Advisor
Re: Help is needed for my father
Beacon Staff,
Thank you so much for this information! It is very useful! At least I know there are clinic trials in China(It is very hard to find them in China's public website). My father is in Xi'an right now and it seems none of these trails are held in this city. However, I will not give up. I will search for details information and contact with these organization which holds clinic trails and my father's doctor to see if there is any chance there.
Beacon Staff wrote:
> Glad we could be of help, molly_china.
>
> Just so you know, there are, in fact, a number of myeloma-related clinical
> trials ongoing, or about to start, in China. Here is a partial list from
> clinicaltrials.gov:
>
> http://1.usa.gov/12xdIfH
>
> We imagine that there may even be more trials taking place in China, but
> which are not listed at clinicaltrials.gov because the investigators in
> China did not feel it important to list the trials at clinicaltrials.gov.
> You may want to find out if there is a website that focuses on listing
> clinical trials being performed in China.
Thank you so much for this information! It is very useful! At least I know there are clinic trials in China(It is very hard to find them in China's public website). My father is in Xi'an right now and it seems none of these trails are held in this city. However, I will not give up. I will search for details information and contact with these organization which holds clinic trails and my father's doctor to see if there is any chance there.
Beacon Staff wrote:
> Glad we could be of help, molly_china.
>
> Just so you know, there are, in fact, a number of myeloma-related clinical
> trials ongoing, or about to start, in China. Here is a partial list from
> clinicaltrials.gov:
>
> http://1.usa.gov/12xdIfH
>
> We imagine that there may even be more trials taking place in China, but
> which are not listed at clinicaltrials.gov because the investigators in
> China did not feel it important to list the trials at clinicaltrials.gov.
> You may want to find out if there is a website that focuses on listing
> clinical trials being performed in China.
Re: Help is needed for my father
Thank you so much for the information, Dr. Libby. I checked Melphalan and find out that some doctors in China also prescript Melphalan for people with myeloma. My father's doctor never told us about this medicine and I will check with him to see if there is such medicine in the hospital where my father is in. In China, the system of medi-care is very complicated. Each hospital carries its own selection of medicines. But many thanks to tell me this medicine. Hope my father could get a chance to try this.
BTW, there is another problem which bothers my father and my family a lot. My father lost feelings below his waist (paralysis because of tumor press his spinal cord for long time) and it has been close to half a year since the surgery (doctor put bone screw and plates). He got some feelings back around his wasit (above navel) in March. After that, there is no improvement over these months. His toe always moves but without his control. We all know that nerves take much longer time to recover. Is there a way which could help nerve recovery? Any medicine or supplement? Because of myeloma, his bone is very easy to be fractured. And most of the recover training in my father's hospital is not fit for him. Is there anything which can help keep his mussel and speed up the recover?
I am sorry for so many questions. Because there are lots of patients need help in hospital in China, and my father's doctor is very busy. Also the service they provide mainly to help people survive from the critical condition. After patient coming to a stable stage, there is not enough recovery service they could provide, especially for patient like my father who needs lots of care. Hope you can understand.
Many thanks!
Molly
Dr. Edward Libby wrote:
> Hello again Molly,
> Melphalan is one of the few drugs for myeloma that is inexpensive.
> Melphalan has been used for 40 years for myeloma. The combination...
> MPT...was a significant advance for the treatment of myeloma in the past
> decade. So adding melphalan to thalidomide and steroids could potentially
> signficantly improve his response. Is there a possibiblity of stem cell
> transplant in China for your father? This would often be used in the US for
> someone less than 70 years of age.
BTW, there is another problem which bothers my father and my family a lot. My father lost feelings below his waist (paralysis because of tumor press his spinal cord for long time) and it has been close to half a year since the surgery (doctor put bone screw and plates). He got some feelings back around his wasit (above navel) in March. After that, there is no improvement over these months. His toe always moves but without his control. We all know that nerves take much longer time to recover. Is there a way which could help nerve recovery? Any medicine or supplement? Because of myeloma, his bone is very easy to be fractured. And most of the recover training in my father's hospital is not fit for him. Is there anything which can help keep his mussel and speed up the recover?
I am sorry for so many questions. Because there are lots of patients need help in hospital in China, and my father's doctor is very busy. Also the service they provide mainly to help people survive from the critical condition. After patient coming to a stable stage, there is not enough recovery service they could provide, especially for patient like my father who needs lots of care. Hope you can understand.
Many thanks!
Molly
Dr. Edward Libby wrote:
> Hello again Molly,
> Melphalan is one of the few drugs for myeloma that is inexpensive.
> Melphalan has been used for 40 years for myeloma. The combination...
> MPT...was a significant advance for the treatment of myeloma in the past
> decade. So adding melphalan to thalidomide and steroids could potentially
> signficantly improve his response. Is there a possibiblity of stem cell
> transplant in China for your father? This would often be used in the US for
> someone less than 70 years of age.
Re: Help is needed for my father
In response to the bone and muscle issue. . . There are medications that can be used for strenghening weak bones from myeloma. Zoledronic acid [Zometa] and pamidronate [Aredia] are preferred. They are IV infusions given once a month.
Physical therapy to improve muscle strength is also important.
Physical therapy to improve muscle strength is also important.
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Dr. Jason Valent - Name: Jason Valent, M.D.
Beacon Medical Advisor
10 posts
• Page 1 of 1