I have posted to this site a couple of times over the years. I have had smoldering myeloma since I was 41. I’m am 67 now, thank God.
My first myeloma specialist told me that I had smoldering myeloma but he was not totally certain because he did not see chain linking. I have managed by the grace of God to have stayed at my current level for 26 years. For many years I did not go to a oncologist. Then my wife insisted that I find a doctor and resume getting checkups. I found a very good doctor and I continued to go to him for many years, but he changed hospitals and one day he just not at the new hospital anymore. I don’t know what happened and have not had my blood tested in 4 years. But I finally found his new office.
I don’t have a deep knowledge of my illness due to an almost paralyzing fear. Well for years, I have had MRI,s which show multiple disc herniations. Now I’m have occasional bad pain in the thoracic part of my spine, worse when I get up in the morning and sometimes when I move wrong.
I’m paralyzed with fear (I’m a coward). I’m afraid it’s the myeloma rearing it’s ugly head.
I’m so afraid to die. I don’t have many friends anymore and I’m retired. To tell the truth, I sit in a room all day and try not to be an annoyance to my wife and son, who both work very hard.
I’m writing now because I don’t have anyone to express my concerns to. Thank you all for your time.
Forums
Re: Smoldering for 16 years, but paralyzed with fear
Wow, 16 years of smoldering. If it were me, I would head back to the specialist and get my tests done. Could be you're still smoldering and your pain is from something else entirely. If the pain is the myeloma, the sooner you start treatment, the better the outcome. Not sure you follow all the new developments, but new drugs and combinations are being used. Don’t get me wrong, I get scared too, but I would like to be around for a whole lot longer.
Good Luck
Good Luck
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Smittie - Age at diagnosis: 54
Re: Smoldering for 16 years, but paralyzed with fear
Hi Ragtop.
My name is Susie. I read your post earlier today and it really touched my heart. I was diagnosed with MGUS in 2005. Just this week my doctor bumped me up to smoldering myeloma. I always knew it was a possibility, but for some reason, hearing those words felt like a punch in the gut that just about took my breath away. My emotions have been all over the place the past few days, but today was a pretty good day! I want to thank you for sharing your story because it gave me hope! You are truly blessed that your health has been stable for 26 years! Since 2014, my disease activity has decided to speed up, and I'd be thrilled if it would shift into park, or better yet reverse!
I believe each one of us will walk through our journeys in unique ways, but I also believe that we all probably share some of the emotions you wrote about. I don't know if I'd say I'm afraid to die, but I certainly have no desire to! I have 2 grandkids, and a new baby coming in September, so I want to stick around and watch them grow. Being a grandparent is important business!
I firmly believe that we are only given grace for one day. No one is promised tomorrow, with or without health issues. We get each new day as a gift, so I want to encourage you to live out loud and don't let this disease steal your joy. We may "have" this disease but it doesn't "have" us unless we give it permission to. Don't give it permission! Speak life!
I will say a prayer for you. I wanted you to know that I heard you today, and you are not alone. I hope you have a wonderful weekend coming up!
Susie (in Ohio)
My name is Susie. I read your post earlier today and it really touched my heart. I was diagnosed with MGUS in 2005. Just this week my doctor bumped me up to smoldering myeloma. I always knew it was a possibility, but for some reason, hearing those words felt like a punch in the gut that just about took my breath away. My emotions have been all over the place the past few days, but today was a pretty good day! I want to thank you for sharing your story because it gave me hope! You are truly blessed that your health has been stable for 26 years! Since 2014, my disease activity has decided to speed up, and I'd be thrilled if it would shift into park, or better yet reverse!
I believe each one of us will walk through our journeys in unique ways, but I also believe that we all probably share some of the emotions you wrote about. I don't know if I'd say I'm afraid to die, but I certainly have no desire to! I have 2 grandkids, and a new baby coming in September, so I want to stick around and watch them grow. Being a grandparent is important business!
I firmly believe that we are only given grace for one day. No one is promised tomorrow, with or without health issues. We get each new day as a gift, so I want to encourage you to live out loud and don't let this disease steal your joy. We may "have" this disease but it doesn't "have" us unless we give it permission to. Don't give it permission! Speak life!
I will say a prayer for you. I wanted you to know that I heard you today, and you are not alone. I hope you have a wonderful weekend coming up!
Susie (in Ohio)
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sgridley - Who do you know with myeloma?: Me
- When were you/they diagnosed?: MGUS 2005, Smoldering 2018
- Age at diagnosis: 41
Re: Smoldering for 16 years, but paralyzed with fear
God Bless You Susie. I pray for you to have a long happy life with much happiness.
Ragtop
Ragtop
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RagtopSL - Who do you know with myeloma?: Me
- When were you/they diagnosed?: 1991
- Age at diagnosis: 41
Re: Smoldering for 16 years, but paralyzed with fear
I have been in a smoldering state for 26 years. I am now 67 years old. It is 3:41 a.m., another sleepless night due to back pain and my cowardly anxiety. God has given me more time than I am entitled to.
Many people would have been very thankful for the time I have been given, and I am so very thankful. I’m afraid to die because I’m a coward. In my 26 years I have put my head in the sand instead leaving everything to God and my doctor never bothering to learn about my blood levels and what they mean. Each visit I’d ask the same stupid question, “Doc, will it ever become myeloma, is it going to kill me?”. The doctor always gave me the same answer: If you live long enough, it will become myeloma.
For the last 15 years my MRI shows I have degenerative disc disease, with cervical herniations, thoracic herniations, and lumbar herniations. For the last month I have been getting pain in the thoracic region of my spine, with pain radiating to my chest, abdominal area, and my ribs. The pain is worst in the morning when I arise. The pain goes down the back of my legs and doesn’t go away until I have been up for an hour. For the remainder of the day, I get a sharp pain when I move wrong.
I’m afraid to go to the orthopedic doctor because I’m fearful of this pain coming from myeloma and not a disc issue. I told my wife it’s the myeloma becoming active and I’m going to die soon. At which point she yells at me and says with me the glass is always half empty. She seems to think it’s just a disc issue.
I’m so afraid I can’t sleep, I can’t eat. I’m getting crazy thoughts. I imagine myself lying in a coffin and I can hear the dirt being thrown on me. I use to be a rational, hard-working man, 29 years in the same job. I enjoyed helping people. Now I’m crying out (like a coward), begging for someone to care and help me out of this mess.
I thank everyone here for the opportunity to express my thoughts. God Bless You All.
Many people would have been very thankful for the time I have been given, and I am so very thankful. I’m afraid to die because I’m a coward. In my 26 years I have put my head in the sand instead leaving everything to God and my doctor never bothering to learn about my blood levels and what they mean. Each visit I’d ask the same stupid question, “Doc, will it ever become myeloma, is it going to kill me?”. The doctor always gave me the same answer: If you live long enough, it will become myeloma.
For the last 15 years my MRI shows I have degenerative disc disease, with cervical herniations, thoracic herniations, and lumbar herniations. For the last month I have been getting pain in the thoracic region of my spine, with pain radiating to my chest, abdominal area, and my ribs. The pain is worst in the morning when I arise. The pain goes down the back of my legs and doesn’t go away until I have been up for an hour. For the remainder of the day, I get a sharp pain when I move wrong.
I’m afraid to go to the orthopedic doctor because I’m fearful of this pain coming from myeloma and not a disc issue. I told my wife it’s the myeloma becoming active and I’m going to die soon. At which point she yells at me and says with me the glass is always half empty. She seems to think it’s just a disc issue.
I’m so afraid I can’t sleep, I can’t eat. I’m getting crazy thoughts. I imagine myself lying in a coffin and I can hear the dirt being thrown on me. I use to be a rational, hard-working man, 29 years in the same job. I enjoyed helping people. Now I’m crying out (like a coward), begging for someone to care and help me out of this mess.
I thank everyone here for the opportunity to express my thoughts. God Bless You All.
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RagtopSL - Who do you know with myeloma?: Me
- When were you/they diagnosed?: 1991
- Age at diagnosis: 41
Re: Smoldering for 16 years, but paralyzed with fear
Hello RagtopSL,
I can understand about your worries concerning progressing from smoldering to active myeloma, but I think that you owe it to yourself to get checked out regarding that. Also, it might help to discuss your anxieties with your family physician, who may be able to help you with that. You might be surprised to find out that if you need treatment for myeloma, that could actually decrease the pain you are suffering now. With a combination of myeloma treatment to decrease the mutant plasma cells that can destroy bone, and bone building medications to encourage the restoration of damaged bone, you might feel a lot better.
When I was first diagnosed with myeloma, I was in terrible pain from having vertebral fractures. The treatments I took helped me so much that I don't have that pain anymore, and have enjoyed already nine years since diagnosis. That is how good and effective the cancer treatments can be.
Even if you have an appointment with a hematological oncologist to sort out these problems, it only gives you more knowledge about your condition. You would still have choices as to what treatment to take, if any. We patients like to say 'Knowledge is Power'. Hope that you will follow through with medical appointments and advice!
I can understand about your worries concerning progressing from smoldering to active myeloma, but I think that you owe it to yourself to get checked out regarding that. Also, it might help to discuss your anxieties with your family physician, who may be able to help you with that. You might be surprised to find out that if you need treatment for myeloma, that could actually decrease the pain you are suffering now. With a combination of myeloma treatment to decrease the mutant plasma cells that can destroy bone, and bone building medications to encourage the restoration of damaged bone, you might feel a lot better.
When I was first diagnosed with myeloma, I was in terrible pain from having vertebral fractures. The treatments I took helped me so much that I don't have that pain anymore, and have enjoyed already nine years since diagnosis. That is how good and effective the cancer treatments can be.
Even if you have an appointment with a hematological oncologist to sort out these problems, it only gives you more knowledge about your condition. You would still have choices as to what treatment to take, if any. We patients like to say 'Knowledge is Power'. Hope that you will follow through with medical appointments and advice!
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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: Smoldering for 16 years, but paralyzed with fear
I’m writing today because I’m in a bad place; I’m confused and scared and I have no place to go. I need your help and understanding. I have written here before and found this I kind place to be.
Let me start by telling you I am a terrible coward. I was told I had smoldering myeloma in 1991, I was 41 years old. My original oncologist referred me to a specialist. I went to him and he was very knowledgeable and kind. When he viewed my bone marrow aspiration, he said he did not see something he referred to as chain linking. My protein levels were higher and I was slightly anemic.
At this point let me explain because of my stupidity and fear I have never researched myeloma (I put my head in the sand like a stupid coward). He said I may have smoldering myeloma, but due to my morbid obesity I should be more concerned about dying from something other than myeloma. Unfortunately I could not continue with this specialist for insurance reasons, so for several years after that I did not see an oncologist. Then finally my wife found another myeloma program here in New York City. I would go every six months for blood tests but no treatment was recommended. But my fear and cowardice was affecting me somewhat psychologically. I went to a psychologist, but it didn’t help, and I was getting worried about money because it was costing a lot and I’m only a working man. So I stopped going.
When they closed down the myeloma center I was going to, my doctor transferred to another center. He stayed there for several years and he suddenly left and I did not know where he went. I got a letter he was at another center in the area. By the time I responded he was no longer there. Then I got a letter that he was at another practice. Again by the time I responded he was no longer there. Then I searched the internet and he was at a cancer center in California. Well now I’m without an oncologist and it’s been this way for the last 4 years. It takes me a while to trust a doctor.
I’m psychologically paralyzed with fear. My life has been this way for the last 27 years. I know people say I should be thankful for all the time I’ve been given, and I truly thank God every day of my life. But my cowardice and fear have hurt my relationship with my wife and my son.
I’m retired now and sit in a 10’ by 12’ room thing about death. I sometimes thing about what it will be like when I’m in my coffin, what it will feel like when I can’t breathe, or being in my coffin with dirt being thrown on me. I have become very morbid.
I have never expressed myself this way before, but I’m alone and scared. I want to live. I’ve never had a vacation, never traveled. I’ve hurt my fantastic wife and great son’s lives. I love them so much.
Please help me. I need some guidance.
Let me start by telling you I am a terrible coward. I was told I had smoldering myeloma in 1991, I was 41 years old. My original oncologist referred me to a specialist. I went to him and he was very knowledgeable and kind. When he viewed my bone marrow aspiration, he said he did not see something he referred to as chain linking. My protein levels were higher and I was slightly anemic.
At this point let me explain because of my stupidity and fear I have never researched myeloma (I put my head in the sand like a stupid coward). He said I may have smoldering myeloma, but due to my morbid obesity I should be more concerned about dying from something other than myeloma. Unfortunately I could not continue with this specialist for insurance reasons, so for several years after that I did not see an oncologist. Then finally my wife found another myeloma program here in New York City. I would go every six months for blood tests but no treatment was recommended. But my fear and cowardice was affecting me somewhat psychologically. I went to a psychologist, but it didn’t help, and I was getting worried about money because it was costing a lot and I’m only a working man. So I stopped going.
When they closed down the myeloma center I was going to, my doctor transferred to another center. He stayed there for several years and he suddenly left and I did not know where he went. I got a letter he was at another center in the area. By the time I responded he was no longer there. Then I got a letter that he was at another practice. Again by the time I responded he was no longer there. Then I searched the internet and he was at a cancer center in California. Well now I’m without an oncologist and it’s been this way for the last 4 years. It takes me a while to trust a doctor.
I’m psychologically paralyzed with fear. My life has been this way for the last 27 years. I know people say I should be thankful for all the time I’ve been given, and I truly thank God every day of my life. But my cowardice and fear have hurt my relationship with my wife and my son.
I’m retired now and sit in a 10’ by 12’ room thing about death. I sometimes thing about what it will be like when I’m in my coffin, what it will feel like when I can’t breathe, or being in my coffin with dirt being thrown on me. I have become very morbid.
I have never expressed myself this way before, but I’m alone and scared. I want to live. I’ve never had a vacation, never traveled. I’ve hurt my fantastic wife and great son’s lives. I love them so much.
Please help me. I need some guidance.
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RagtopSL - Who do you know with myeloma?: Me
- When were you/they diagnosed?: 1991
- Age at diagnosis: 41
Re: Smoldering for 16 years, but paralyzed with fear
Ragtop,
In my non-professional opinion, your problem isn’t cowardice (we are all cowards when facing tough decisions), it’s depression. And depression is very treatable. You need to see someone who deals with this stuff and can prescribe you anti-depression medications. In a matter of a few weeks, they usually help a lot. You will likely feel much better, and then can deal with the myeloma issue.
Myeloma like yours (and mine) doesn’t have to be debilitating. But untreated depression is.
You are not alone in this challenge. Lots of have been through it, and with treatment, you’ll feel better.
If you take steps to a solution, please let us know your progress. Your example can help others.
Good luck
David
In my non-professional opinion, your problem isn’t cowardice (we are all cowards when facing tough decisions), it’s depression. And depression is very treatable. You need to see someone who deals with this stuff and can prescribe you anti-depression medications. In a matter of a few weeks, they usually help a lot. You will likely feel much better, and then can deal with the myeloma issue.
Myeloma like yours (and mine) doesn’t have to be debilitating. But untreated depression is.
You are not alone in this challenge. Lots of have been through it, and with treatment, you’ll feel better.
If you take steps to a solution, please let us know your progress. Your example can help others.
Good luck
David
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Arizonan - Name: Arizonan
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2010
- Age at diagnosis: 54
Re: Smoldering for 16 years, but paralyzed with fear
Hello Ragtop,
I think that David gave you very good advice, and you should seek treatment for your depression right now. Also, going four years without checking on your smoldering myeloma is too long, so you need to find another oncologist. I have found that all of the hematologists I have met are kind people. They want to help people to get better, and that is what makes them tick. There are many more treatments available now than there were when you were diagnosed. So good luck with everything and please let us know how everything is going.
I think that David gave you very good advice, and you should seek treatment for your depression right now. Also, going four years without checking on your smoldering myeloma is too long, so you need to find another oncologist. I have found that all of the hematologists I have met are kind people. They want to help people to get better, and that is what makes them tick. There are many more treatments available now than there were when you were diagnosed. So good luck with everything and please let us know how everything is going.
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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: Smoldering for 16 years, but paralyzed with fear
Dear Ragtop,
I just came across your post and I appreciate your honesty about your fears. Sometimes I feel like the only person with myeloma who has such fears and I feel guilty that I am not appreciating the extra time that a stem cell transplant has given me. Myeloma or the fear of it really messes with your thoughts. I don't want to die either because I have a daughter that is my best friend, still young, and I fear missing her marriage and children.
My worst problem is lack of motivation. I work freelance in a room about the size of yours and that is where I want to stay. I don't respond to friends' messages and that is not like me. I had a multitude of interests before myeloma but I have lost all motivation for them. I don't want to go too far into this so that you're discouraged. I just want you to know that you are not alone in your fears.
I am taking antidepressants, which do help, and I have started to see a therapist. I want to fight not only for my life but for a good life. Please, update us on your feelings and how you are doing.
My best to you,
Elise
I just came across your post and I appreciate your honesty about your fears. Sometimes I feel like the only person with myeloma who has such fears and I feel guilty that I am not appreciating the extra time that a stem cell transplant has given me. Myeloma or the fear of it really messes with your thoughts. I don't want to die either because I have a daughter that is my best friend, still young, and I fear missing her marriage and children.
My worst problem is lack of motivation. I work freelance in a room about the size of yours and that is where I want to stay. I don't respond to friends' messages and that is not like me. I had a multitude of interests before myeloma but I have lost all motivation for them. I don't want to go too far into this so that you're discouraged. I just want you to know that you are not alone in your fears.
I am taking antidepressants, which do help, and I have started to see a therapist. I want to fight not only for my life but for a good life. Please, update us on your feelings and how you are doing.
My best to you,
Elise
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