Gamarjobat, Giorgi!
Your post caught my attention because I lived in Tbilisi for a while and it is not often that I come across Georgians outside of Georgian forums.
I don't know that I have much to contribute to your situation except to say that I understand how difficult certain things are to come by in Georgia, let alone medicines for rare diseases! If you and your doctors think that thalidomide is a treatment option, I can say that my mom did incredibly well on a combination of thalidomide and dexamethasone, so it would be worth a try. We are in South Africa and here we also don't have the whole range of treatment options, but, so far, the available ones have been good enough, fortunately.
I want to wish you and your wife (who is my age) the best of luck and send you strength over the continents all the way to beautiful Sakartvelo.
Amelia
Forums
Re: Extramedullary plasmacytomas in eyes, spinal nerves
Hi,
I've had an extramedullary plasmacytoma on my pancreas.
I was first treated with radiation and Revlimid in 2010. A year later it came back, I was treated with cyclosporine and dex for about 4 months and then I had a auto stem cell transplant in September of 2011.
A year later, it came back and I was treated with Revlimid / Velcade / dex for 4 months. I took Neurontin (gabapentin) for neuropathy and it helped to rid it.
Now I am on Revlimid and dex and will be on it forever. I am 56 years old. I have gone down on my dose of each but I know I can't stop them.
I know Revlimid is expensive, maybe thalidomide and dex would work for your wife.
Sending prayers,
Elizabeth
I've had an extramedullary plasmacytoma on my pancreas.
I was first treated with radiation and Revlimid in 2010. A year later it came back, I was treated with cyclosporine and dex for about 4 months and then I had a auto stem cell transplant in September of 2011.
A year later, it came back and I was treated with Revlimid / Velcade / dex for 4 months. I took Neurontin (gabapentin) for neuropathy and it helped to rid it.
Now I am on Revlimid and dex and will be on it forever. I am 56 years old. I have gone down on my dose of each but I know I can't stop them.
I know Revlimid is expensive, maybe thalidomide and dex would work for your wife.
Sending prayers,
Elizabeth
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Anonymous
Re: Extramedullary plasmacytomas in eyes, spinal nerves
Gamarjoba Amelia,
I'm glad that you find me, a good foundation for solidarity, thank you very much.
I'm discussing the thalidomide option with our doctors. First we are hurrying for irradiation.
Our second challenge is that we have a very good haematologist in Berlin and in Georgia and all the time we try to ensure that we communicate the problems with both of them. In Germany, of course, they have richer experience, knowledge, and opportunities to evaluate the situation and suggest actions.
I hope your mom is fine and wish her strong and long-lasting health and longevity.
Dear Elizabeth,
You are a brave woman. Thank you for sharing your experience, warm words and encouragement. God bless you and I wish you good health. I'm on my way to search for thalidomide since, as I have mentioned in my previous posts, even Velcade is not available in Georgia. Each time we need it, we order from outside the country, mainly from Turkey and Russia. Thalidomide is the same.
Thank you again for your empathy.
I'm glad that you find me, a good foundation for solidarity, thank you very much.
I'm discussing the thalidomide option with our doctors. First we are hurrying for irradiation.
Our second challenge is that we have a very good haematologist in Berlin and in Georgia and all the time we try to ensure that we communicate the problems with both of them. In Germany, of course, they have richer experience, knowledge, and opportunities to evaluate the situation and suggest actions.
I hope your mom is fine and wish her strong and long-lasting health and longevity.
Dear Elizabeth,
You are a brave woman. Thank you for sharing your experience, warm words and encouragement. God bless you and I wish you good health. I'm on my way to search for thalidomide since, as I have mentioned in my previous posts, even Velcade is not available in Georgia. Each time we need it, we order from outside the country, mainly from Turkey and Russia. Thalidomide is the same.
Thank you again for your empathy.
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