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Re: Stage 3 multiple myeloma survival
Thanks everybody for sharing with me your experience, it helps a lot to know I still have a chance to live. I don't know too much about multiple myeloma, only what I've been told by doctors and what I read on the Internet, so this site is helping me a lot. I'm still very scared about all this and I'm trying to get used to all this, because I know my life will never be the same like before, but it is difficult to adjust to this situation.
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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
Dear elena7bb
I know how scary a multiple myeloma diagnosis can be, and getting the news that you are in Stage 3 can really be frightening. But as others have said, this by no means implies that you are anywhere near death's door. Treatments today are better than ever, and Stage 3 does not have the same dire implications it may have for other types of cancer.
According to several of the accepted criteria for staging, I am in Stage 3, and yet I am responding well to chemotherapy.
Many people diagnosed at Stage 3 turn out to be long term survivors. There is no reason you can't be one of them.
Here's hoping for the very best for you!
I know how scary a multiple myeloma diagnosis can be, and getting the news that you are in Stage 3 can really be frightening. But as others have said, this by no means implies that you are anywhere near death's door. Treatments today are better than ever, and Stage 3 does not have the same dire implications it may have for other types of cancer.
According to several of the accepted criteria for staging, I am in Stage 3, and yet I am responding well to chemotherapy.
Many people diagnosed at Stage 3 turn out to be long term survivors. There is no reason you can't be one of them.
Here's hoping for the very best for you!
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: Stage 3 multiple myeloma survival
I have a question. What is the point of going through chemo if there is no chance for a cure? Is it not better to try alternative medicine, like honey, curcumin, and other natural products? I heard Rick Simpson oil works also, so what would be the best treatment for myeloma?
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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
As the disease progresses, more damage is done to your bone marrow, bones, and kidneys. Some of that damage can be irreversible. Chemo knocks the disease down (sometimes to where it is undetectable).
I would consider alternative treatments as something to do in conjunction with prescribed chemo. Always discuss any planned alternative treatments with your oncologist to make sure they are safe to take along with whatever other treatment you are on.
Also, be aware that modern myeloma chemotherapy is not the traditional "hair falls out and you puke" chemo. Some of the modern agents are in pill form, some are an injection every week or two. Side effects are minimal.
I would consider alternative treatments as something to do in conjunction with prescribed chemo. Always discuss any planned alternative treatments with your oncologist to make sure they are safe to take along with whatever other treatment you are on.
Also, be aware that modern myeloma chemotherapy is not the traditional "hair falls out and you puke" chemo. Some of the modern agents are in pill form, some are an injection every week or two. Side effects are minimal.
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rumnting - Who do you know with myeloma?: husband
- When were you/they diagnosed?: 4/9/11
- Age at diagnosis: 54
Re: Stage 3 multiple myeloma survival
Elena,
I want to build off Rumnting's excellent response. As I believe Ron on our forum once mentioned, a good way to think about multiple myeloma is to liken it to a chronic disease such as diabetes, which is also not curable. It requires ongoing treatment and you can usually keep it controlled for quite a long time with minimum side effects.
The damage you can suffer by not treating multiple myeloma with conventional treatments is devastating and is simply not something you want to experience.
As Rumnting mentioned, if you are going to experiment with alternative treatments, it should not be in place of conventional treatments, IMHO. If there were proven, stand-alone alternative treatments that could be used to significantly reverse or arrest the damage that symptomatic multiple myeloma, everyone on this forum would be flocking to use them.
If I were in your shoes, I would suggest first getting your disease under control with conventional treatment and then explore the use of alternative treatments to help maintain your response to the treatment.
I want to build off Rumnting's excellent response. As I believe Ron on our forum once mentioned, a good way to think about multiple myeloma is to liken it to a chronic disease such as diabetes, which is also not curable. It requires ongoing treatment and you can usually keep it controlled for quite a long time with minimum side effects.
The damage you can suffer by not treating multiple myeloma with conventional treatments is devastating and is simply not something you want to experience.
As Rumnting mentioned, if you are going to experiment with alternative treatments, it should not be in place of conventional treatments, IMHO. If there were proven, stand-alone alternative treatments that could be used to significantly reverse or arrest the damage that symptomatic multiple myeloma, everyone on this forum would be flocking to use them.
If I were in your shoes, I would suggest first getting your disease under control with conventional treatment and then explore the use of alternative treatments to help maintain your response to the treatment.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Stage 3 multiple myeloma survival
Hello again, Elena:
Adding to rumnting and Multibilly's comments (to which I entirely agree), there is a place for the supplements and alternative treatments that you mention, and some people believe in them and use them. That place, however is not as the primary line of treatment for active multiple myeloma.
Although no one can guarantee a response to initial induction, if you get an average to above average response, you can expect several years of relatively symptom-free life. At some point when relapse occurs (say hopefully 4 to 5 years), there is a very good chance there will be new and better medications that might give you another good interval. Once the multiple myeloma becomes active however, in all likelihood, the alternative treatments and supplements would do almost nothing.
It is very much a shock to have to deal with this out of the blue. However, with some time and effort, the issues that are very confusing and overwhelming at first start to make more sense. So you need to bone up on the topic, but a better understanding will come. And, by the way, one of the first things you should do is to have a specialist that handles multiple myeloma full time. That is possible in most of the major metropolitan areas, but might not be in some of the rural areas. In that case, you should see the generalist regularly, and take a hike to consult with the specialist as needed (maybe once or twice a year).
Good luck to you.
Adding to rumnting and Multibilly's comments (to which I entirely agree), there is a place for the supplements and alternative treatments that you mention, and some people believe in them and use them. That place, however is not as the primary line of treatment for active multiple myeloma.
Although no one can guarantee a response to initial induction, if you get an average to above average response, you can expect several years of relatively symptom-free life. At some point when relapse occurs (say hopefully 4 to 5 years), there is a very good chance there will be new and better medications that might give you another good interval. Once the multiple myeloma becomes active however, in all likelihood, the alternative treatments and supplements would do almost nothing.
It is very much a shock to have to deal with this out of the blue. However, with some time and effort, the issues that are very confusing and overwhelming at first start to make more sense. So you need to bone up on the topic, but a better understanding will come. And, by the way, one of the first things you should do is to have a specialist that handles multiple myeloma full time. That is possible in most of the major metropolitan areas, but might not be in some of the rural areas. In that case, you should see the generalist regularly, and take a hike to consult with the specialist as needed (maybe once or twice a year).
Good luck to you.
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JPC - Name: JPC
Re: Stage 3 multiple myeloma survival
Elena,
Do you have access to a myeloma support group? Talking, in person, with others who have myeloma can be very useful.
In my own journey in the last year, I found my local group supportive in 2 ways - meeting people in my own age-group who were treated and were living a good quality of life, and also meeting the people who where 8-15 years of living with myeloma, which gave me a deeper sense of the seriousness and variations of this non-curable medical condition and the many side effects of its treatments.
Best of luck to you. Learn as much as you can – you're at the beginning of a long road.
RT
Do you have access to a myeloma support group? Talking, in person, with others who have myeloma can be very useful.
In my own journey in the last year, I found my local group supportive in 2 ways - meeting people in my own age-group who were treated and were living a good quality of life, and also meeting the people who where 8-15 years of living with myeloma, which gave me a deeper sense of the seriousness and variations of this non-curable medical condition and the many side effects of its treatments.
Best of luck to you. Learn as much as you can – you're at the beginning of a long road.
RT
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RadiantTiger - Name: Radiant Tiger
- Who do you know with myeloma?: Myself, my deceased uncle
- When were you/they diagnosed?: Feb 2015
- Age at diagnosis: 54
Re: Stage 3 multiple myeloma survival
Hi Elena,
I agree with the feedback you've already gotten about alternative therapies, so I won't comment further on that issue.
I do want to repeat JPC's suggestion that you try to see a myeloma specialist. Your profile mentions that you are in Romania. Unfortunately, this list of leading myeloma specialists worldwide doesn't include any specialists in Romania. However, I'm sure if you do some research, you will be able to locate a leading center for the treatment of blood cancers, including multiple myeloma, in Romania.
One reason I think it important that you try to see a myeloma specialist is because, at your age, it is particularly worth considering whether you should undergo a donor (allogeneic) stem cell transplant. This is a different type of stem cell transplant than most myeloma patients receive. Usually, myeloma receive stem cell transplants that use their own stem cells. This "transplant" isn't really intended to be therapy; it's actually designed to help patients recover from the high-dose chemotherapy that they receive prior to the transplant.
With a donor transplant, on the other hand, you receive stem cells from another person. They also are given to you after some intensive therapy, but they are expected to do more than just help you recover. Because you essentially are being given another person's immune system, the hope is that the new immune system will help subdue, and perhaps even eradicate, any remaining myeloma in your body.
Donor stem cell transplants are currently considered the only treatment option for multiple myeloma that has a good chance of actually curing the disease, not just controlling it. But donor transplants also involve greater risks than autologous (own) stem cell transplants. That is why donor transplants are not routinely recommended for newly diagnosed myeloma patients at most treatment centers.
There are a lot of discussions here in the forum about donor / allo transplants. This link will take you to a list of them.
Many of the discussions include postings by Mark (or Mark11), a myeloma patient who had a donor stem cell transplant a number of years ago. The combination of his initial treatment, an autologous transplant, and a donor transplant may well have cured him of his myeloma. Mark is very knowledgeable about donor transplants in particular, and myeloma in general.
I know this is a lot to absorb. Just let us know if you have more questions, and we'll do our best to help.
I agree with the feedback you've already gotten about alternative therapies, so I won't comment further on that issue.
I do want to repeat JPC's suggestion that you try to see a myeloma specialist. Your profile mentions that you are in Romania. Unfortunately, this list of leading myeloma specialists worldwide doesn't include any specialists in Romania. However, I'm sure if you do some research, you will be able to locate a leading center for the treatment of blood cancers, including multiple myeloma, in Romania.
One reason I think it important that you try to see a myeloma specialist is because, at your age, it is particularly worth considering whether you should undergo a donor (allogeneic) stem cell transplant. This is a different type of stem cell transplant than most myeloma patients receive. Usually, myeloma receive stem cell transplants that use their own stem cells. This "transplant" isn't really intended to be therapy; it's actually designed to help patients recover from the high-dose chemotherapy that they receive prior to the transplant.
With a donor transplant, on the other hand, you receive stem cells from another person. They also are given to you after some intensive therapy, but they are expected to do more than just help you recover. Because you essentially are being given another person's immune system, the hope is that the new immune system will help subdue, and perhaps even eradicate, any remaining myeloma in your body.
Donor stem cell transplants are currently considered the only treatment option for multiple myeloma that has a good chance of actually curing the disease, not just controlling it. But donor transplants also involve greater risks than autologous (own) stem cell transplants. That is why donor transplants are not routinely recommended for newly diagnosed myeloma patients at most treatment centers.
There are a lot of discussions here in the forum about donor / allo transplants. This link will take you to a list of them.
Many of the discussions include postings by Mark (or Mark11), a myeloma patient who had a donor stem cell transplant a number of years ago. The combination of his initial treatment, an autologous transplant, and a donor transplant may well have cured him of his myeloma. Mark is very knowledgeable about donor transplants in particular, and myeloma in general.
I know this is a lot to absorb. Just let us know if you have more questions, and we'll do our best to help.
Re: Stage 3 multiple myeloma survival
It is difficult to talk to my doctor, because I don't see him at all. He does not come to see me or the other patients he has. They always say he is very busy. Only the doctors from his team come to see me, but they don't communicate too much also and they look at me like I will die tomorrow. They gave me no chance to live and I don't get any support from them, only sad eyes and pity! It does not help me at all this situation and when I come to the hospital I feel very depressed.
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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 somewhat know what Elena is talking about as my parents grew up in a neighbouring country to hers. Many of the doctors have little bedside manner, the nurses even worse, in these former east-block nations.
My mom has a somewhat interesting stories about about her hospital stay back in that part of Europe. If the same thing would have happened in Western Europe, Canada/USA, AUS/NZ, the whole shift of nurses would have been suspended by the licensing board.
Elena, is there any chance you get to Austria for a medical opinion?
My mom has a somewhat interesting stories about about her hospital stay back in that part of Europe. If the same thing would have happened in Western Europe, Canada/USA, AUS/NZ, the whole shift of nurses would have been suspended by the licensing board.
Elena, is there any chance you get to Austria for a medical opinion?
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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
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