I have been thankful for the stories cancer people have written. They are very infomative.
I was diagnosed with multiple myeloma in January 2019. Tests were made because I was 2 years anemic. I was supposed to begin treatment in February with Velcade, cyclophosphamide, and dexamethasone. Since everything seemed to me so new, I wanted to read about people who have been through treatment or are having treatment, so I did some searching and found The Beacon. I was feeling well and reading the side effects people suffer I decided to do nothing. In Septemper I felt back pain, hip pain, and rib pain, so I had an x-ray and a CT scan. The myeloma has spread to the spine. Now I am thinking about taking treatments. Dying is not a problem, but I wonder how long one can live with pain, and it seems to me that treatment lengthens life in this case but with pain. At least we have got pain killers.
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Henriette - Name: Henriette
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: January 2019
- Age at diagnosis: 68
Re: Hello from Queensland, Australia
Hello Henriette, and welcome to the forum. I think it is a good idea to get treatments for your myeloma. Once the cancer cells are destroyed, they can no longer damage your bones, and the pain will diminish. Of course, pain killers are also there, but hopefully just putting your cancer into a remission would help a lot. Best wishes and keep us posted! (We have visited your beautiful state in Australia. Port Douglas and Hamilton Island, and that was a wonderful holiday!)
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Hello from Queensland, Australia
Henriette, I'll be the last to tell you what to do here, but I've had this since 2013, and I had no bone involvement at the time. Still, I dived into treatment, and for seven years I've dealt with all the side effects that come with Velcade, Revlimid, stem cell transplants, etc.
Now I'm finally dealing with some of the bone issues that come with multiple myeloma. Not in the spine, thank heaven, but I have a lesion in my arm that is going to require a 'nail' (or pin or rod) put in there to keep it from breaking, plus radiation to help the pain. The doctors said that it wasn't a case of "if' I break my arm", or "you are in danger of", but "when" I break it and "pretty darned soon" if I don't have surgery, and it hurts. I also have a lesion in my sinus cavity which makes it very hard to eat (dentures don't fit) and it hurts too. I'm getting both of them 'fixed' this coming week.
The point here is this: yes, I've had seven years of treatment, with the side effects. I'd rather have (and I'm serious as a volcanic eruption about this) another seven years of treatments with the side effects than another month or two of the sort of bone pain that comes along without fighting. and I'm not afraid of death, either. The dying part sucks, but being dead isn't scary.
There are ways to cope with the side effects. Really. Starbucks iced green tea latte is wonderful for nausea. For diarrhea, there are many ways to fight that (and a bidet to keep you comfortable while you do it). For the "fun" of dex, well, more energy at times is good for the creative juices, yes? I have had side effects (Velcade) that caused me to stop taking it, but there was something else to take instead.
For me, then, the side effects are worth it. I got to see my first grandbaby, and might even get to see her go to school. I get to see my daughter build her new house, and bloom in her career. I get to knit more, write more, and see more.
No, everybody is different, with different goals, in different places in their lives. I can't speak to yours, but I'm going to go with the "side effects" in mine for awhile longer.
Now I'm finally dealing with some of the bone issues that come with multiple myeloma. Not in the spine, thank heaven, but I have a lesion in my arm that is going to require a 'nail' (or pin or rod) put in there to keep it from breaking, plus radiation to help the pain. The doctors said that it wasn't a case of "if' I break my arm", or "you are in danger of", but "when" I break it and "pretty darned soon" if I don't have surgery, and it hurts. I also have a lesion in my sinus cavity which makes it very hard to eat (dentures don't fit) and it hurts too. I'm getting both of them 'fixed' this coming week.
The point here is this: yes, I've had seven years of treatment, with the side effects. I'd rather have (and I'm serious as a volcanic eruption about this) another seven years of treatments with the side effects than another month or two of the sort of bone pain that comes along without fighting. and I'm not afraid of death, either. The dying part sucks, but being dead isn't scary.
There are ways to cope with the side effects. Really. Starbucks iced green tea latte is wonderful for nausea. For diarrhea, there are many ways to fight that (and a bidet to keep you comfortable while you do it). For the "fun" of dex, well, more energy at times is good for the creative juices, yes? I have had side effects (Velcade) that caused me to stop taking it, but there was something else to take instead.
For me, then, the side effects are worth it. I got to see my first grandbaby, and might even get to see her go to school. I get to see my daughter build her new house, and bloom in her career. I get to knit more, write more, and see more.
No, everybody is different, with different goals, in different places in their lives. I can't speak to yours, but I'm going to go with the "side effects" in mine for awhile longer.
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: Hello from Queensland, Australia
Thank you, Nancy, for your positive reply. Canada is a great country too. Now on the Internet we can see any place in the world.
Thanks, Dianaiad, for the good advice. I will try out the Starbucks iced green latte. That sounds good. A lesion in the arm must hurt, and I did not know one can get a lesion in the sinus cavity. Ouch.
You have both been having myeloma for few years now and experienced the bad times of it, but your hopeful reply is comforting .
The information in this forum is very informative. I appreciate it a lot.
Thanks, Dianaiad, for the good advice. I will try out the Starbucks iced green latte. That sounds good. A lesion in the arm must hurt, and I did not know one can get a lesion in the sinus cavity. Ouch.
You have both been having myeloma for few years now and experienced the bad times of it, but your hopeful reply is comforting .
The information in this forum is very informative. I appreciate it a lot.
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Henriette - Name: Henriette
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: January 2019
- Age at diagnosis: 68
Re: Hello from Queensland, Australia
Henriette,
I did have spinal vertebral fractures at the time of my diagnosis, and that was the most pain I have ever encountered. Fortunately for me, the treatments I had put me into a very good partial remission. It took quite a while, but the pain cleared up. That was a close call, and I was lucky to survive my initial encounter with the disease, which is why I am still OK with having treatments, even a decade later!
Good luck!
I did have spinal vertebral fractures at the time of my diagnosis, and that was the most pain I have ever encountered. Fortunately for me, the treatments I had put me into a very good partial remission. It took quite a while, but the pain cleared up. That was a close call, and I was lucky to survive my initial encounter with the disease, which is why I am still OK with having treatments, even a decade later!
Good luck!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Hello from Queensland, Australia
Spinal vertebral fractures, ouch! Nancy, you say the treatment helped, well there is hope things get better. This is not a nice cancer.
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Henriette - Name: Henriette
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: January 2019
- Age at diagnosis: 68
Re: Hello from Queensland, Australia
No, it is not nice at all! The treatments I had were what was the norm ten years ago, and may have changed since then. I had an Velcade plus dexamethasone induction therapy. The Velcade was given by IV infusion; now it is typically by subcutaneous injection. After that, I had an autologous stem cell transplant. I have been on and off treatment for a decade, due to my own journey through this. My age was 58 at diagnosis, so I am the same age as you also.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Hello from Queensland, Australia
It's good that treatments are improving. What made me originally refuse treatment was when I read the stories of the multiple myeloma people and what they went through. Like you Nancy, you must have felt bad. It is a sad road, but from what I can read on this forum, it is getting better.
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Henriette - Name: Henriette
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: January 2019
- Age at diagnosis: 68
Re: Hello from Queensland, Australia
Dear Henriette,
I got the VCD (Velcade, cyclophosphamide, and dexamethasone) treatment you mention here, with nearly no side effects. And then the autologous stem cell transplant, which had the expected side effects (!!!). But after another 3 months I was back and at work again.
I am not in a position to give advice; each person has to follow their heart and make their own decisions. But I never regretted my choice.
I got the VCD (Velcade, cyclophosphamide, and dexamethasone) treatment you mention here, with nearly no side effects. And then the autologous stem cell transplant, which had the expected side effects (!!!). But after another 3 months I was back and at work again.
I am not in a position to give advice; each person has to follow their heart and make their own decisions. But I never regretted my choice.
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Lev - Name: Lev
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: June 2014
- Age at diagnosis: 57
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