As a person born and raised in the Eastern Block I absolutely know the feeling. In fact, the spontaneous fracture that led to discovering my myeloma happened on a trip to Bulgaria. I went to the emergency, where I was admonished that I should have contacted a doctor earlier. Then I was not even x-rayed. Then I was referred to a "top notch" specialist who diagnosed me with bursitis and gave me steroid shots. All of this considering that my father and my sister are physicians and know everyone in the city. Thank God I got back to New York in a timely manner.
In too many words, Elena stay strong. You need to get up to speed on what's available in Romania as far as treatment options. My original advice and generalization was based on the assumption that you are in the U.S. If the latest meds are not available in Romania (which I suspect they would not be), you need to do your best to get to a place where the most current treatments are available. I cannot emphasize this enough.
Again, best, best of luck to you. My thoughts and sympathies are with you.
Ivan
Forums
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ivanm - Name: Ivan Mitev
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August, 2011
- Age at diagnosis: 37
Re: Stage 3 multiple myeloma survival
Yes, I can go to Austria, but the medical bill it is way too expensive for me right now. I can't work because of my condition and I don't get any financial help from nobody, so going to Austria is not an option for me.
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elena7bb - Name: Elena
- Who do you know with myeloma?: me
- When were you/they diagnosed?: one month and a half ago
- Age at diagnosis: 35
Re: Stage 3 multiple myeloma survival
I figured that much. Hence the multitude of announcements from people from the former eastern block looking for peer-to-peer donations and help for treatment in Western Europe. Before you despair, you need to be crystal clear on what's available in Romania. For example, if I am not mistaken, Velcade (or equivalent thereof) is available in Bulgaria. While it is not the latest, that alone could keep you going a long time. Same goes for Revlimid or the local equivalent thereof. Talk to your doctors immediately and ask them what your options are as far as medications and transplants.
As to your comment about what's the point considering there is no cure, the point is that scientists are close to making this a chronic disease. In other words, they may be able to keep you alive a long time, just like diabetes. There is no cure for that either. The longer you stick around, the greater the chances are that you will live to an old age. That's the motto that we young myeloma patients live by.
Good luck once again.
Ivan
As to your comment about what's the point considering there is no cure, the point is that scientists are close to making this a chronic disease. In other words, they may be able to keep you alive a long time, just like diabetes. There is no cure for that either. The longer you stick around, the greater the chances are that you will live to an old age. That's the motto that we young myeloma patients live by.
Good luck once again.
Ivan
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ivanm - Name: Ivan Mitev
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August, 2011
- Age at diagnosis: 37
Re: Stage 3 multiple myeloma survival
Thank you Ivan for your kind words, but I am not asking for a donation. I just wanted to show the lack of interest from our doctors and the way we are treated like patients with a terminal disease. I am still waiting for approval for Velcade. It seems to be a long process to have access to Velcade here.
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elena7bb - Name: Elena
- Who do you know with myeloma?: me
- When were you/they diagnosed?: one month and a half ago
- Age at diagnosis: 35
Re: Stage 3 multiple myeloma survival
Absolutely in no way did I mean to imply that you were looking for one. Even if you were, there is nothing wrong with that. If I was in a predicament and struggling for my life, or God forbid that of my child, and if I was in a place where that was the only option, probably I would have asked for a donation. I just noted that as a fact of life and that it is a reflection of the state of medical care in that part of the world (judging by my experience with Bulgaria – maybe in Romania it is different, I don't know).
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ivanm - Name: Ivan Mitev
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August, 2011
- Age at diagnosis: 37
Re: Stage 3 multiple myeloma survival
I don't know how it is in Bulgaria, but in Romania it is very bad.
You come to the hospital, nobody talks to you, nobody explains to you about the effect of chemo, if your body responds to it, if you are getting better or not, nothing at all. Not even about your blood test. They don't say anything.
It is really depressing all this and there is nothing you can do about it. If you have a problem with that, you can go and stop the treatment, nobody is keeping you there by force!
You come to the hospital, nobody talks to you, nobody explains to you about the effect of chemo, if your body responds to it, if you are getting better or not, nothing at all. Not even about your blood test. They don't say anything.
It is really depressing all this and there is nothing you can do about it. If you have a problem with that, you can go and stop the treatment, nobody is keeping you there by force!
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elena7bb - Name: Elena
- Who do you know with myeloma?: me
- When were you/they diagnosed?: one month and a half ago
- Age at diagnosis: 35
Re: Stage 3 multiple myeloma survival
Elena,
Have you applied for a disability pension from the Romanian government yet?
Have you applied for a disability pension from the Romanian government yet?
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: Stage 3 multiple myeloma survival
No I did not. I've heard it takes at least 6 months to be approved and you need a lot of paperwork.
For now I can't go and apply cause I can't walk too well, so it's not possible for me to gather all the papers I need. Plus the pension it is not too much anyway.
For now I can't go and apply cause I can't walk too well, so it's not possible for me to gather all the papers I need. Plus the pension it is not too much anyway.
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elena7bb - Name: Elena
- Who do you know with myeloma?: me
- When were you/they diagnosed?: one month and a half ago
- Age at diagnosis: 35
Re: Stage 3 multiple myeloma survival
Elena, do you have a nurse visiting you at home which could help you with applying for disability paperwork?
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: Stage 3 multiple myeloma survival
No i don't have! The government does not provide anything for us free, so you have to pay for everything, unless you ask for help, like that pension from the state, which is a small amount and it doesn't help too much, plus that you have to wait a lot of time to be approved. Then they will pay for somebody to take care of you also, if you can't take care of yourself, but in my country these days it is very difficult to trust somebody and let them into your house, because they will only try to take advantage of the situation, not actually help the sick person!
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elena7bb - Name: Elena
- Who do you know with myeloma?: me
- When were you/they diagnosed?: one month and a half ago
- Age at diagnosis: 35
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