I was diagnosed with smoldering myeloma 4 days ago, and at my appointment was given a pack all about myeloma. We (my husband and I) were told that at some point, whenever that may be, the myeloma will progress to symptomatic myeloma, and regarding children, it's advisable we have them sooner rather than later because of the myeloma treatment I probably will need to receive at some point.
I am currently 32. Lots to take in!
Since then I have told quite a few close family and friends of my diagnosis, but it seems to me that most people are being very dismissive of my diagnosis, telling me I'll be fine and not to worry, and as long as I feel ok and am being monitored, then that's good. Thanks guys!
My husband is under the impression that I don't have myeloma as I'm not symptomatic, and that I'll probably be fine and never develop symptoms.
I am so confused! It seems like I don't fit in to any of the 'groups' of people that have myeloma, if I actually do have it at all. I'm not male, not old, not black, not symptomatic, not MGUS. I just don't know where I fit in here. There is so little evidence on younger people having myeloma, and what the prognosis is.
Is this an unusual experience after being diagnosed with smoldering myeloma?
I feel like I've been given this life changing diagnosis but then told to go away, not worry about it, and anyway 'you'll be fine'.
Forums
Re: No one seems to take my smoldering myeloma seriously
Hi Cathryn,
I don't know why the people around you seem to be dismissive of your situation. Perhaps it is because it is very stressful and threatening for them, and they are in some kind of denial or something. However, here in this forum, we all have a better feeling for what this means to you, and you can count on just about everyone here for support, understanding, and useful information.
When my MGUS first turned into multiple myeloma and I had to begin treatment, it was far more difficult for my wife to deal with than it was for me. I was fortunate that she was supportive and not in denial, but I could tell she was quite stressed by it. She had her own way of trying to deal with it; if anything it was the opposite of your situation, with her being too worried, too concerned, and too "protective". Of course I don't know your friends and family, but this seeming lack of concern may perhaps be their way of dealing with their own sadness and fear about the diagnosis.
In any case, hopefully they will come around if and when you have to begin treatment. And as perhaps you have read in this forum, treatment can be extremely successful, although not without side effects and other discomforts from time to time. Despite these, your future may indeed be bright. And it is my impression that many people can be "smoldering" and not require treatment for a long time.
Many people have gone down the road that you are going, and please feel free to look for concern and lots of useful information in this forum. I'm sure everyone here wishes you the best of luck, and understands.
bodumene
I don't know why the people around you seem to be dismissive of your situation. Perhaps it is because it is very stressful and threatening for them, and they are in some kind of denial or something. However, here in this forum, we all have a better feeling for what this means to you, and you can count on just about everyone here for support, understanding, and useful information.
When my MGUS first turned into multiple myeloma and I had to begin treatment, it was far more difficult for my wife to deal with than it was for me. I was fortunate that she was supportive and not in denial, but I could tell she was quite stressed by it. She had her own way of trying to deal with it; if anything it was the opposite of your situation, with her being too worried, too concerned, and too "protective". Of course I don't know your friends and family, but this seeming lack of concern may perhaps be their way of dealing with their own sadness and fear about the diagnosis.
In any case, hopefully they will come around if and when you have to begin treatment. And as perhaps you have read in this forum, treatment can be extremely successful, although not without side effects and other discomforts from time to time. Despite these, your future may indeed be bright. And it is my impression that many people can be "smoldering" and not require treatment for a long time.
Many people have gone down the road that you are going, and please feel free to look for concern and lots of useful information in this forum. I'm sure everyone here wishes you the best of luck, and understands.
bodumene
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bodumene - Name: bodumene
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: January, 2017
Re: No one seems to take my smoldering myeloma seriously
Hi bodumene,
Thank you for your speedy reply and supportive words. I think that because I appear to be taking things well, people think everything is fine, and maybe don’t realise the implications of the diagnosis. I don’t want a load of sympathy from people but just some recognition that they understand the gravity of what I’ve been told. My husband is a pragmatist and an optimist, so I do understand where he’s coming from because in his mind, in the long term, I will be okay what with all the new treatments coming out, but it feels like he’s overlooking the not so good bit in the middle.
Thanks again.
Thank you for your speedy reply and supportive words. I think that because I appear to be taking things well, people think everything is fine, and maybe don’t realise the implications of the diagnosis. I don’t want a load of sympathy from people but just some recognition that they understand the gravity of what I’ve been told. My husband is a pragmatist and an optimist, so I do understand where he’s coming from because in his mind, in the long term, I will be okay what with all the new treatments coming out, but it feels like he’s overlooking the not so good bit in the middle.
Thanks again.
Re: No one seems to take my smoldering myeloma seriously
Hi Cathryn33,
Though I have been following this forum since my diagnosis 4 years ago with smoldering multiple myeloma at age 43, I had not registered until now. I felt compelled to respond to your post in hopes of helping you feel heard.
I remember feeling overwhelmed, scared, and alone, even though I had good support from family and the close friends I told. When I read about your family reactions, I wondered if your family may recognize your distress and may be trying to help you without realizing their responses make you feel unheard. Also, my sense is myeloma oncologists want to promote hopefulness in us, and also, rightly, see us as the least in need of their services. This “you’re fine” approach, while meant to be optimistic, can feel invalidating. We are no longer at the wondering stage, we know we have myeloma, but there is nothing to be done.
You are just beginning your journey, and I am not sure how much you have read, but there has been a lot of great progress in myeloma research and treatments. This forum is a wonderful resources and a great place to turn for specific questions or just read and know you are not alone in your experience. There are a lot of great people here.
Good luck in your journey.
Though I have been following this forum since my diagnosis 4 years ago with smoldering multiple myeloma at age 43, I had not registered until now. I felt compelled to respond to your post in hopes of helping you feel heard.
I remember feeling overwhelmed, scared, and alone, even though I had good support from family and the close friends I told. When I read about your family reactions, I wondered if your family may recognize your distress and may be trying to help you without realizing their responses make you feel unheard. Also, my sense is myeloma oncologists want to promote hopefulness in us, and also, rightly, see us as the least in need of their services. This “you’re fine” approach, while meant to be optimistic, can feel invalidating. We are no longer at the wondering stage, we know we have myeloma, but there is nothing to be done.
You are just beginning your journey, and I am not sure how much you have read, but there has been a lot of great progress in myeloma research and treatments. This forum is a wonderful resources and a great place to turn for specific questions or just read and know you are not alone in your experience. There are a lot of great people here.
Good luck in your journey.
Re: No one seems to take my smoldering myeloma seriously
Hi MyeLens,
Thanks for replying to my post. I think my diagnosis is slowly sinking in and I’m learning that people are trying to help as best they can, and that it is hard to know what to say to someone who has been given this diagnosis. I’m feeling more positive and am grateful to be in touch with others who are in the same boat.
I wish you all the best for your journey too!
Thanks for replying to my post. I think my diagnosis is slowly sinking in and I’m learning that people are trying to help as best they can, and that it is hard to know what to say to someone who has been given this diagnosis. I’m feeling more positive and am grateful to be in touch with others who are in the same boat.
I wish you all the best for your journey too!
Re: No one seems to take my smoldering myeloma seriously
Hi Cathryn,
I can really relate to your story as I too was diagnosed with smoldering myeloma last November at the age of 39.
When I felt my surrounding doesn't get the gravity of things, I explained to them that with a solid tumor, when its being recognized, it's being removed, while in smoldering myeloma the tumor is there, but we are waiting for it to affect other organs before starting treating it.
As for your comments on children, if it helps, I twice gave birth under this condition since looking at my past blood test I had a jump in total protein in 2007 (before, run rate was in the range of 7.7 in 2007 jumped to 8.4 and stayed high in range of 8.4-9 till now, both myeloma specialist I went to think I have this condition for long time).
Both pregnancy and birth went really well and I was completely unaware to my condition.
Currently I am just focusing on how can I linger this stage for as long as I can, I have started diet, eating healthy, taking 4 mg curcumin a day, I have also scheduled an appointment with a naturopath which is also a physician, trying to reduced stress as much as I can and eliminate any negative factors in my life.
Wish us too linger forever.
All the best,
Anna
I can really relate to your story as I too was diagnosed with smoldering myeloma last November at the age of 39.
When I felt my surrounding doesn't get the gravity of things, I explained to them that with a solid tumor, when its being recognized, it's being removed, while in smoldering myeloma the tumor is there, but we are waiting for it to affect other organs before starting treating it.
As for your comments on children, if it helps, I twice gave birth under this condition since looking at my past blood test I had a jump in total protein in 2007 (before, run rate was in the range of 7.7 in 2007 jumped to 8.4 and stayed high in range of 8.4-9 till now, both myeloma specialist I went to think I have this condition for long time).
Both pregnancy and birth went really well and I was completely unaware to my condition.
Currently I am just focusing on how can I linger this stage for as long as I can, I have started diet, eating healthy, taking 4 mg curcumin a day, I have also scheduled an appointment with a naturopath which is also a physician, trying to reduced stress as much as I can and eliminate any negative factors in my life.
Wish us too linger forever.
All the best,
Anna
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Anna721 - Name: Anna
- Who do you know with myeloma?: I
- When were you/they diagnosed?: Nov, 2017
- Age at diagnosis: 40
Re: No one seems to take my smoldering myeloma seriously
Hi Cathryn,
I completely understand how you feel. I was diagnosed with smoldering myeloma in October of last year and, as I was told I was "high risk," I was expected to have to begin treatment early this year. So far, I am completely asymptomatic except for borderline osteoporosis, which is probably related to multiple myeloma. My free light chain ratios fluctuate between 70 and 100 which is, of course, worrisome. But no need for intervention just yet and maybe never? We just don't know how this will play out.
I made the choice to tell people on a "need to know" basis specifically because of what you're experiencing. I've told less than 10 people what's going on. With no outward evidence of having a life changing event, I figured the news might be regarded as "attention seeking" or else folks would look at me with fear and pity, which isn't helpful and not what I want. It's difficult, since we both know that this is life-changing and will always be a part of our story. For now at least, I'm not telling my full story. I don't know if it's a good or bad decision, but for me, it's working.
At first, I was being tested monthly, now I go for labs every 12 weeks. In the midst, I'm doing my best to live a healthy lifestyle, eating mostly "superfoods", 8 grams curcumin per day, exercise, etc (I was doing this before diagnosis anyhow, minus the large curcumin dosage; the worst thing is for us to think we caused this by doing / not doing something right in our lives, but that's not the case!) I just figure it won't hurt to be as healthy as possible whether or not this progresses into something and it helps me to focus on my good health instead of the bad that I can't see or feel.
I wish you the best of everything and, however you choose to manage information about your diagnosis, please know you're not alone.You're part of a community where knowledge is power.
I completely understand how you feel. I was diagnosed with smoldering myeloma in October of last year and, as I was told I was "high risk," I was expected to have to begin treatment early this year. So far, I am completely asymptomatic except for borderline osteoporosis, which is probably related to multiple myeloma. My free light chain ratios fluctuate between 70 and 100 which is, of course, worrisome. But no need for intervention just yet and maybe never? We just don't know how this will play out.
I made the choice to tell people on a "need to know" basis specifically because of what you're experiencing. I've told less than 10 people what's going on. With no outward evidence of having a life changing event, I figured the news might be regarded as "attention seeking" or else folks would look at me with fear and pity, which isn't helpful and not what I want. It's difficult, since we both know that this is life-changing and will always be a part of our story. For now at least, I'm not telling my full story. I don't know if it's a good or bad decision, but for me, it's working.
At first, I was being tested monthly, now I go for labs every 12 weeks. In the midst, I'm doing my best to live a healthy lifestyle, eating mostly "superfoods", 8 grams curcumin per day, exercise, etc (I was doing this before diagnosis anyhow, minus the large curcumin dosage; the worst thing is for us to think we caused this by doing / not doing something right in our lives, but that's not the case!) I just figure it won't hurt to be as healthy as possible whether or not this progresses into something and it helps me to focus on my good health instead of the bad that I can't see or feel.
I wish you the best of everything and, however you choose to manage information about your diagnosis, please know you're not alone.You're part of a community where knowledge is power.
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Defcon Dragon - Name: Defcon Dragon
- Who do you know with myeloma?: myself, smoldering
- When were you/they diagnosed?: October 2017
- Age at diagnosis: 55
Re: No one seems to take my smoldering myeloma seriously
Hi Cathryn,
You have definitely found the right place to learn and share information. I was diagnosed this past September 2017, which for me was the start of the school year, and I have two boys 14 and 12 years old. Typically I am very active in the Parent Teacher Association (PTA) and volunteer at the school and church quite a bit.
My husband and I decided to limit who we shared my diagnosis with to our immediate family (not our boys) and a handful of close friends. Similar to Defcon Dragon, we didn't want to have people look at me with pity in their eyes, and I also didn't want them to ask me how I was every time I saw them, considering "nothing new" is happening.
In addition to keeping the information private, I have also chosen to scale back on almost all of my volunteering to give me time to focus on myself and our family. For the first 6 months, I was going for vitamin C infusions 2x / week, which limited my availability anyway.
I'm not going to lie, it is hard to see the folks I used to say "yes I can help" and now have to politely decline without giving a reason. I imagine they must be thinking something is up, but I am not focusing my energy on that. We also take frequent family trips. I take 8 grams of curcumin and some other supplements and try to eat healthy and walk as much as I can. I'm hoping to do whatever I can to keep my numbers stable as they started pretty high.
The initial couple of months are going to be the hardest, at least they were for me. Everything became emotional, is this my last "normal" Thanksgiving, Christmas, etc. As you hopefully stay healthy and fall back into a rhythm, you may actually be able to push the diagnosis to the back of your mind and live in the present as much as you can. Some days I'm better at that than others.
Be at peace with whatever you decide on sharing with others. Stay well. Eileen
You have definitely found the right place to learn and share information. I was diagnosed this past September 2017, which for me was the start of the school year, and I have two boys 14 and 12 years old. Typically I am very active in the Parent Teacher Association (PTA) and volunteer at the school and church quite a bit.
My husband and I decided to limit who we shared my diagnosis with to our immediate family (not our boys) and a handful of close friends. Similar to Defcon Dragon, we didn't want to have people look at me with pity in their eyes, and I also didn't want them to ask me how I was every time I saw them, considering "nothing new" is happening.
In addition to keeping the information private, I have also chosen to scale back on almost all of my volunteering to give me time to focus on myself and our family. For the first 6 months, I was going for vitamin C infusions 2x / week, which limited my availability anyway.
I'm not going to lie, it is hard to see the folks I used to say "yes I can help" and now have to politely decline without giving a reason. I imagine they must be thinking something is up, but I am not focusing my energy on that. We also take frequent family trips. I take 8 grams of curcumin and some other supplements and try to eat healthy and walk as much as I can. I'm hoping to do whatever I can to keep my numbers stable as they started pretty high.
The initial couple of months are going to be the hardest, at least they were for me. Everything became emotional, is this my last "normal" Thanksgiving, Christmas, etc. As you hopefully stay healthy and fall back into a rhythm, you may actually be able to push the diagnosis to the back of your mind and live in the present as much as you can. Some days I'm better at that than others.
Be at peace with whatever you decide on sharing with others. Stay well. Eileen
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Eileenk - Name: Eileen
- Who do you know with myeloma?: me
- When were you/they diagnosed?: Smoldering, September 2017
- Age at diagnosis: 49
Re: No one seems to take my smoldering myeloma seriously
Hi Cathryn,
I am 63, diagnosed 4 years ago with multiple myeloma. The first few months are the hardest, as you adjust to your "new normal." Hopefully, you will not progress to multiple myeloma at all, and if you do, there are excellent treatment options now, even more than when I was diagnosed. FYI, after induction therapy (I worked full time through that) and a stem cell transplant, I am on maintenance therapy and doing well.
My advice to you is to make sure you get the support and understanding you need. If you prefer, and you have insurance that will cover therapy, I encourage to explore that option, as well. No need to be brave 24/7. A "pre-cancer" or cancer diagnosis is difficult to face. It takes time to accept the situation and cope with the various daily aspects this life-changing event presents. It's good to be strong, but showing vulnerability, leaning on someone, or many people, is a good thing, and will enable you to better handle things for yourself and your family. It doesn't happen overnight.
I am thankful that you are being following in the smoldering stage; that ensures that if and when there are any changes they will be detected quickly. Getting a jump on things is a definite benefit.
Good luck, and keep reaching out to the Beacon. We are all here for you!
Ellen Goldstein-Harris
I am 63, diagnosed 4 years ago with multiple myeloma. The first few months are the hardest, as you adjust to your "new normal." Hopefully, you will not progress to multiple myeloma at all, and if you do, there are excellent treatment options now, even more than when I was diagnosed. FYI, after induction therapy (I worked full time through that) and a stem cell transplant, I am on maintenance therapy and doing well.
My advice to you is to make sure you get the support and understanding you need. If you prefer, and you have insurance that will cover therapy, I encourage to explore that option, as well. No need to be brave 24/7. A "pre-cancer" or cancer diagnosis is difficult to face. It takes time to accept the situation and cope with the various daily aspects this life-changing event presents. It's good to be strong, but showing vulnerability, leaning on someone, or many people, is a good thing, and will enable you to better handle things for yourself and your family. It doesn't happen overnight.
I am thankful that you are being following in the smoldering stage; that ensures that if and when there are any changes they will be detected quickly. Getting a jump on things is a definite benefit.
Good luck, and keep reaching out to the Beacon. We are all here for you!
Ellen Goldstein-Harris
Re: No one seems to take my smoldering myeloma seriously
Hi Cathryn,
I was diagnosed with smoldering when I was 64. I am now 79 and have been stable for the past 15 years. My only treatment was a regimen of Aredia (a bisphosphonate to strengthen the bones against myeloma attack) twice in the beginning for about a year each time. I stopped each time when my creatinine level got too high and could damage my kidneys.
I go for blood and urine tests now every 6 months at a hospital in New York and another in Boston. For the first 10 years I did these visits and tests every 3 months and then was told that twice a year would be OK.
At each visit I ask my prognosis and am told "we don't know how long before you may progress to full myeloma, but after remaining stable for 15 years, you will probably die of something else."
You may also be fortunate to go for many years without progression. When I was first diagnosed one myeloma specialist I went to bluntly told me I "had 2-4 years to live." Another specialist, when asked the same question, said "I don't know how long you have to live but there are new drugs and treatment regimens coming out every day and you may live a long time" I stayed with the second specialist Statistically, your chance of disease progression goes down after 5 and 10 years.
I also pray a lot and thank God frequently. I wish you the best.
Bob Romanoff
I was diagnosed with smoldering when I was 64. I am now 79 and have been stable for the past 15 years. My only treatment was a regimen of Aredia (a bisphosphonate to strengthen the bones against myeloma attack) twice in the beginning for about a year each time. I stopped each time when my creatinine level got too high and could damage my kidneys.
I go for blood and urine tests now every 6 months at a hospital in New York and another in Boston. For the first 10 years I did these visits and tests every 3 months and then was told that twice a year would be OK.
At each visit I ask my prognosis and am told "we don't know how long before you may progress to full myeloma, but after remaining stable for 15 years, you will probably die of something else."
You may also be fortunate to go for many years without progression. When I was first diagnosed one myeloma specialist I went to bluntly told me I "had 2-4 years to live." Another specialist, when asked the same question, said "I don't know how long you have to live but there are new drugs and treatment regimens coming out every day and you may live a long time" I stayed with the second specialist Statistically, your chance of disease progression goes down after 5 and 10 years.
I also pray a lot and thank God frequently. I wish you the best.
Bob Romanoff
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