Hi, I am Tatiana from Moscow, Russia and my mother was diagnosed with multiple myeloma this July. Stage 3a, Bence Jones. She was treated for pancreatitis for 2 months, but she had more dangerous multiple myeloma.
Now she had 1 course of VCP, preparing for a second now. Today I received a Velcade from the pharmacy. She has pain in legs, Tramal [tramadol] is not helping too much.
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Tara2007 - Name: Tatiana
- Who do you know with myeloma?: mother
- When were you/they diagnosed?: July 2014
Re: Tatiana from Russia - mother has multiple myeloma
Welcome to the forum, Tatiana. I am sorry to hear about your mother's diagnosis and the pain she has been having in her legs. You have come to a good place, however, for information and support.
You mentioned that your mother is taking VCP to treat her myeloma. Is this Velcade, cyclophosphamide, and prednisone?
Also, the pain that your mother is experiencing in her legs. Did she have the pain before she was diagnosed with myeloma, or did the pain develop after she started treatment with the VCP?
I hope your mother responds well to her treatment. Please let us know any questions that we can answer, and keep us updated on how your mother is doing.
You mentioned that your mother is taking VCP to treat her myeloma. Is this Velcade, cyclophosphamide, and prednisone?
Also, the pain that your mother is experiencing in her legs. Did she have the pain before she was diagnosed with myeloma, or did the pain develop after she started treatment with the VCP?
I hope your mother responds well to her treatment. Please let us know any questions that we can answer, and keep us updated on how your mother is doing.
Re: Tatiana from Russia - mother has multiple myeloma
She has problems with her legs, convulsions and pain in the knees. She had pain in the knees before but not so bad, plus anemia in the legs.
VCP is Velcade, cyclophosphamide, prednisolone, 2nd will be Velcade, melphalan, prednisolone, may be Zometa.
She is not sleeping, has type 2 diabetes, was on insulin, now sugar is not high. Can't walk yet for 2 month, so something like this.
Thinking about going to Germany may be, may be they have another kind of treatment. What you can say about lenalidomide [Revlimid]? I've read a lot of people have therapy with this pill.
Mother is 74.
VCP is Velcade, cyclophosphamide, prednisolone, 2nd will be Velcade, melphalan, prednisolone, may be Zometa.
She is not sleeping, has type 2 diabetes, was on insulin, now sugar is not high. Can't walk yet for 2 month, so something like this.
Thinking about going to Germany may be, may be they have another kind of treatment. What you can say about lenalidomide [Revlimid]? I've read a lot of people have therapy with this pill.
Mother is 74.
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Tara2007 - Name: Tatiana
- Who do you know with myeloma?: mother
- When were you/they diagnosed?: July 2014
Re: Tatiana from Russia - mother has multiple myeloma
Hi Tatiana, I hope for the best for your Mother. My Mother had stage III multiple myeloma. Had horrible leg and back pain. I can tell you that tramadol did nothing for her pain. The only thing that helped her with the pain was a fentanyl patch. They put a clear patch on and change it every 72 hours.
Towards the end of her life she also needed oxycondone with the patch.
Talk to your doctors about something stronger so your Mom is comfortable. I pray for the best for you and your mother.
Towards the end of her life she also needed oxycondone with the patch.
Talk to your doctors about something stronger so your Mom is comfortable. I pray for the best for you and your mother.
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sandy57 - Name: sandy57
- Who do you know with myeloma?: Mother
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 78
Re: Tatiana from Russia - mother has multiple myeloma
Velcade and lenalidomide [Revlimid] are probably the two most widely used drugs to treat myeloma. I was initially treated with Velcade and dexamethasone and it worked really well on my myeloma. Now after my stem cell transplant I have been taking lenalidomide for about 2.5 years now. Is lenalidomide available in Russia?
It is likely in Germany they use these same treatments and a number of other drugs options that are available as well. These may also be available in Russia, you may want to look into it. The best reason in my opinion to travel for treatment would be to go to a doctor or medical center that specializes in the treatment of myeloma for a second opinion.
I would also recommend seeing how she responds to VCP. It has not been that long that she has been on it. VCP is a treatment that is also used in the United States by many.
You mother is not a young women anymore, but hopefully she has the strength to get through this initial treatment with VCP. Though there is no cure for myeloma, most people these days do respond to their myeloma treatment.
It is likely in Germany they use these same treatments and a number of other drugs options that are available as well. These may also be available in Russia, you may want to look into it. The best reason in my opinion to travel for treatment would be to go to a doctor or medical center that specializes in the treatment of myeloma for a second opinion.
I would also recommend seeing how she responds to VCP. It has not been that long that she has been on it. VCP is a treatment that is also used in the United States by many.
You mother is not a young women anymore, but hopefully she has the strength to get through this initial treatment with VCP. Though there is no cure for myeloma, most people these days do respond to their myeloma treatment.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Tatiana from Russia - mother has multiple myeloma
Hello Tatiana,
You or your mother should speak with her doctors to find out if they think the pain in her legs is due to the Velcade. Velcade can cause what is known as peripheral neuropathy, which tingling and numbness, usually in the extremities. But it is possible that this is what she is experiencing in her legs, particularly if it has gotten worse since her treatment.
If her doctors feel the problem is due to the Velcade, one thing to check is how they are administering the Velcade. In the past, Velcade was given always as an infusion into the vein of the patient. It is becoming more common now, however, to give it as an injection under the skin (a "subcutaneous" injection).
One advantage of giving it this way is that it can cause less peripheral neuropathy.
If the Velcade is not the source of the pain in your mother's legs, then, as Eric has suggested above, it probably is worth waiting to see whether your mother responds to the VCP regimen. It's a good regimen, as is the combination of Velcade, melphalan, and prednisone that her doctors are also considering.
It may be worth waiting to switch to Revlimid (lenalidomide) until you know for certain that the Velcade combinations she is now receiving do not work. That way, if you wait, she will have the option of trying Revlimid if / when she relapses.
I am not a physician, however, so you should certainly discuss these issues with your mother's doctors.
Good luck, and please keep us updated on how your mother is doing and any additional questions you may have. All of us here in the forum are happy to help as best we can.
You or your mother should speak with her doctors to find out if they think the pain in her legs is due to the Velcade. Velcade can cause what is known as peripheral neuropathy, which tingling and numbness, usually in the extremities. But it is possible that this is what she is experiencing in her legs, particularly if it has gotten worse since her treatment.
If her doctors feel the problem is due to the Velcade, one thing to check is how they are administering the Velcade. In the past, Velcade was given always as an infusion into the vein of the patient. It is becoming more common now, however, to give it as an injection under the skin (a "subcutaneous" injection).
One advantage of giving it this way is that it can cause less peripheral neuropathy.
If the Velcade is not the source of the pain in your mother's legs, then, as Eric has suggested above, it probably is worth waiting to see whether your mother responds to the VCP regimen. It's a good regimen, as is the combination of Velcade, melphalan, and prednisone that her doctors are also considering.
It may be worth waiting to switch to Revlimid (lenalidomide) until you know for certain that the Velcade combinations she is now receiving do not work. That way, if you wait, she will have the option of trying Revlimid if / when she relapses.
I am not a physician, however, so you should certainly discuss these issues with your mother's doctors.
Good luck, and please keep us updated on how your mother is doing and any additional questions you may have. All of us here in the forum are happy to help as best we can.
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Boris Simkovich - Name: Boris Simkovich
Founder
The Myeloma Beacon
Re: Tatiana from Russia - mother has multiple myeloma
Dear Tatiana:
Maybe your mother is suffering from PNP (polyneuropathy) coming from Velcade. Please talk to your mother's doctor about this.
All the best,
Elfriede (living in Germany)
Maybe your mother is suffering from PNP (polyneuropathy) coming from Velcade. Please talk to your mother's doctor about this.
All the best,
Elfriede (living in Germany)
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Elfriede - Name: Elfriede
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: February 2012
- Age at diagnosis: 57
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