I officially started my journey in June of 2016 (I was 30 at the time of diagnosis). Had an annual physical and was planning for a second child when my life was turned upside down. My family doctor noticed elevated protein in my blood work and had me do a lot of follow-up testing. Then had an oncologist tell me that I had smoldering myeloma and referred me to a university hospital. There I have been seeing a specialist and doing blood work every 6 weeks since August 2016, bone marrow biopsy every 3 months, and in January 2017 started Zometa every 3 months as well.
I have the t4:14 IgG kappa version of this thing and it terrifies me. We ended up doing away with the idea of more children. I have one son that is now 4 (he was 3 at the time of my diagnosis). I have been on such a roller coaster thinking I am going to leave my wonderful husband and son to live the rest of their lives on their own. Looking for some ways to keep hope alive in my life, but at 31, it stinks to think that my future and the future of my family has been ripped away from us.
I saw the news report about the CAR-T therapy recently, which brought me some encouragement for a while, but that has since faded as I found out that it could take up to 10 years for that to become standard care. I may not make it that long. I am in a pretty dark place right now. I am seeing a counselor every other week. It helps some. I am really looking for other ways to hold on to hope.
I am glad that I am still smoldering, but I worry every day about every little pain and how it might be a sign that things are going downhill.
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Olie53 - Name: Olie53
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: August 2016 - Smoldering Myeloma
- Age at diagnosis: 30
Re: 31 years old with smoldering myeloma
Hi Olie,
Welcome to the forum, but sorry to hear about your diagnosis at such a young age and that you are feeling so much angst.
Are you really getting a bone marrow biopsy every 3 months with a diagnosis of smoldering myeloma? Why so frequently?
Also, were you experiencing any bone loss that caused your specialist to put you on Zometa? It's not uncommon for smoldering patients to be put on Zometa if they have some bone loss, but it isn't typically used otherwise on smoldering patients.
Also, do you mind saying where you live? I ask because folks on this site might also be able to recommend some specialists that would help put your mind more at ease with better understanding the risk of progression of smoldering myeloma and just how well some of the newer treatments that are currently FDA approved work.
Lastly, if I were 30 when I had my diagnosis of smoldering myeloma (I'm currently smoldering and 60), I might have considered looking into an allogeneic stem cell transplant (a stem cell transplant using a donor's stem cells) at the time I progressed to symptomatic myeloma. Note that not every myeloma specialist would be on board with the allo approach, but it can offer the hope of a potential cure or a very long remission. This also isn't to say that I would necessarily choose the allo route, but I would have investigated the option rigorously at your age. Just some food for thought.
Good luck and I hope that this forum can help you feel more hopeful about your prognosis.
Welcome to the forum, but sorry to hear about your diagnosis at such a young age and that you are feeling so much angst.
Are you really getting a bone marrow biopsy every 3 months with a diagnosis of smoldering myeloma? Why so frequently?
Also, were you experiencing any bone loss that caused your specialist to put you on Zometa? It's not uncommon for smoldering patients to be put on Zometa if they have some bone loss, but it isn't typically used otherwise on smoldering patients.
Also, do you mind saying where you live? I ask because folks on this site might also be able to recommend some specialists that would help put your mind more at ease with better understanding the risk of progression of smoldering myeloma and just how well some of the newer treatments that are currently FDA approved work.
Lastly, if I were 30 when I had my diagnosis of smoldering myeloma (I'm currently smoldering and 60), I might have considered looking into an allogeneic stem cell transplant (a stem cell transplant using a donor's stem cells) at the time I progressed to symptomatic myeloma. Note that not every myeloma specialist would be on board with the allo approach, but it can offer the hope of a potential cure or a very long remission. This also isn't to say that I would necessarily choose the allo route, but I would have investigated the option rigorously at your age. Just some food for thought.
Good luck and I hope that this forum can help you feel more hopeful about your prognosis.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: 31 years old with smoldering myeloma
Sorry to welcome you here Ollie. I know how it feels to hear about this diagnosis. My mother was diagnosed in May at the age of 64 and I still cannot get over it. You are young and have lots of treatment options open. Go through the forum and you can see so many members who are in complete remission for 10-20 years.
Don't lose hope. I just read Libby's post yesterday and she was diagnosed in 2009. There are many such stories. I don't go through anything negative here, maybe I am weak to read it. Eat good food, take care of yourself and your little one. You are going to stay strong to see your son graduate, get married and have kids. Stay strong.
Lots of love ❤️
Don't lose hope. I just read Libby's post yesterday and she was diagnosed in 2009. There are many such stories. I don't go through anything negative here, maybe I am weak to read it. Eat good food, take care of yourself and your little one. You are going to stay strong to see your son graduate, get married and have kids. Stay strong.
Lots of love ❤️
Re: 31 years old with smoldering myeloma
I am in eastern Iowa, my local oncologist referred me to the University of Iowa and I had been seeing Dr. Tricot, but he retired this summer. So, I will be seeing Dr. Jethava, but I have not met him yet.
As far as I know, I have not had any bone loss. I had my last PET scan in late June and was told no lesions yet. Dr. Tricot is the one that ordered the regular bone marrow biopsy, I am assuming because of the t4:14 and my age. I had my 4th biopsy when I did the PET in June and things are staying pretty consistent between 15-20% plasma cells. It sounded like he wanted to do the tandem transplant as soon as possible while I was still in good heath otherwise, so I assume he had some threshold he was waiting for before we proceeded down that path, but I don't really know. He did always say he was passionate about giving his patients the longest possible time of quality life. I hope that Jethava will have the same passion.
I had considered asking about the allo transplant, but with the higher risks, I don't know that I want to lose any time I might have with my son. Whereas, if I go with the auto, it may buy more time and I believe I can still try the allo after the auto if need be, but I am certainly no expert.
I appreciate the encouragement from everyone on this forum. I have been reading it for a long time, but decided that it was time to get involved to see if it would help my emotional state.
As far as I know, I have not had any bone loss. I had my last PET scan in late June and was told no lesions yet. Dr. Tricot is the one that ordered the regular bone marrow biopsy, I am assuming because of the t4:14 and my age. I had my 4th biopsy when I did the PET in June and things are staying pretty consistent between 15-20% plasma cells. It sounded like he wanted to do the tandem transplant as soon as possible while I was still in good heath otherwise, so I assume he had some threshold he was waiting for before we proceeded down that path, but I don't really know. He did always say he was passionate about giving his patients the longest possible time of quality life. I hope that Jethava will have the same passion.
I had considered asking about the allo transplant, but with the higher risks, I don't know that I want to lose any time I might have with my son. Whereas, if I go with the auto, it may buy more time and I believe I can still try the allo after the auto if need be, but I am certainly no expert.
I appreciate the encouragement from everyone on this forum. I have been reading it for a long time, but decided that it was time to get involved to see if it would help my emotional state.
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Olie53 - Name: Olie53
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: August 2016 - Smoldering Myeloma
- Age at diagnosis: 30
Re: 31 years old with smoldering myeloma
Hi Ollie,
I have multiple myeloma with t(4:14). At 42, I was diagnosed with stage 4. My M-protein count was 109. Four crushed vertebrae. Severely anemic. As a result, in a very dark place myself.
My world changed, for the better!
With a good support system including my family, my partner, my oncologist/hematologist, and countless nurses and support staff, I began to see that this disease will not not crush and defeat me.
I'm now 48. In complete remission. My therapy included cyclophosphamide, Velcade, and dexamethasone (CyBorD), followed up by 2 autologous stem cell transplants back to back. Maintenance therapy with Velcade for 2 years. Now I am on Ninlaro.
Being young at the time had its advantages. As I was saying for the better, I went on a ski trip between transplants. Celebrated new year's with a new sense of hope like never before. Went on a golf trip in the south. Played the best I've ever played. Enjoyed the largest lobster I've ever seen in Providence on a weekend road trip. Camp my beautiful province of Ontario. All this within 6 months post transplant. It gave me the courage to try new things. Completed a renovation of my beautiful new condo. I do things I love most that give me fulfillment.
What I'm trying to say is that all these adventures as well as as seeing the sun rise and set every day is a miracle in itself. Enjoy life. Do the things you always thought about! Say the things you truly want to say! Live life like you've always wanted to live It!
I have multiple myeloma with t(4:14). At 42, I was diagnosed with stage 4. My M-protein count was 109. Four crushed vertebrae. Severely anemic. As a result, in a very dark place myself.
My world changed, for the better!
With a good support system including my family, my partner, my oncologist/hematologist, and countless nurses and support staff, I began to see that this disease will not not crush and defeat me.
I'm now 48. In complete remission. My therapy included cyclophosphamide, Velcade, and dexamethasone (CyBorD), followed up by 2 autologous stem cell transplants back to back. Maintenance therapy with Velcade for 2 years. Now I am on Ninlaro.
Being young at the time had its advantages. As I was saying for the better, I went on a ski trip between transplants. Celebrated new year's with a new sense of hope like never before. Went on a golf trip in the south. Played the best I've ever played. Enjoyed the largest lobster I've ever seen in Providence on a weekend road trip. Camp my beautiful province of Ontario. All this within 6 months post transplant. It gave me the courage to try new things. Completed a renovation of my beautiful new condo. I do things I love most that give me fulfillment.
What I'm trying to say is that all these adventures as well as as seeing the sun rise and set every day is a miracle in itself. Enjoy life. Do the things you always thought about! Say the things you truly want to say! Live life like you've always wanted to live It!
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Colleen
Re: 31 years old with smoldering myeloma
You can manage this! Get a myeloma specialist, ask a lot of questions, and take the reins. You are stronger than you think. Blessings to you for strength and healing.
You will have many friends here to push you along, encourage you, and share their experiences. I learned more from this group than my doctor. It is an amazing site of information and hands-on experience. And you get a group of cheerleaders.
You will have many friends here to push you along, encourage you, and share their experiences. I learned more from this group than my doctor. It is an amazing site of information and hands-on experience. And you get a group of cheerleaders.
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Hopeful1 - Name: Hopeful1
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: March 2016
- Age at diagnosis: 56
Re: 31 years old with smoldering myeloma
I am so sorry, Olie, that you are going through this. Your story is so similar to mine. I went in for a regular physical and blood work last December, found elevated protein levels, and was formally diagnosed in January. I went through induction rounds of Kyprolis, Revlimid, and dexamethasone and had a stem cell transplant in June. Now I am going through consolidation therapy with Ninlaro, Revlimid, and dex. My plasma is in normal range, my light chains are good, and my m-spike, which started at 4.0 g/dL (40 g/l) is creeping down slowly and is currently at a 0.4 g/dL. I am hoping to get to the magic 0.0 in the future.
I would encourage you to seek out a myeloma specialist. I started with a "regular" oncologist, and he was lovely to work with, but quickly decided that I needed to take control of my own care, so found a myeloma specialist in the city where I live.
Good luck with your journey and treatment!
I would encourage you to seek out a myeloma specialist. I started with a "regular" oncologist, and he was lovely to work with, but quickly decided that I needed to take control of my own care, so found a myeloma specialist in the city where I live.
Good luck with your journey and treatment!
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krispy620 - Name: krispy620
- Who do you know with myeloma?: self
- When were you/they diagnosed?: January, 2017
- Age at diagnosis: 46
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