Good afternoon everyone, Justin here.
I was diagnosed with multiple myeloma on February 14th, 2015. I went to the ER at my wife's request due to my back hurting so bad I couldn't walk. When they did a feeling test on my feet, we found that I had lost all feeling in the lower half of my body. They did an MRI, and found a large tumor at the base of my spine that had crushed my nerve endings and eaten my lower spine. At that point, they told me that it looked like I had cancer, and I would need surgery to remove the tumor and rebuild my spine. They told me that I would probably not ever walk again due to the damage to my spine and nerves.
They found I had blood clots that had formed in my legs, and installed an IVC filter into me, and put me on a some pretty heavy medicines to help break them up, and put me on dexamethasone per the request of my newly hired oncologist. He ordered a bone marrow biopsy, and for the next 5 days it felt like my whole world had shattered around me. My girlfriend (now wife) at the time didn't know what to say or do. We finally looked at each other, said we loved each other, and that if we stuck together, we could get through anything.
On February 22nd, 2015 I went in for a 12-hour surgery on my spine to remove the tumor and rebuild my spine. That was phase 1, phase 2 was 24 days of radiation treatment of 3 different areas of my body. Each treatment due to having to treat 3 different areas required about an hour of time. My other 2 rounds treated 1 spot each and took about 15 minutes, and were only 15 treatments each.
Today marks 3.5 years since my original diagnosis. Two weeks ago, I met with my radiation doctor and my oncologist. We determined that my myeloma is throughout my entire bone structure in some form, and that a different treatment method should be discussed. Last week I went for my second bone marrow biopsy, and this coming Friday will meet with my oncologist to discuss the treatment plan, as we settled on Velcade, cyclophosphamide, and dexamethasone. Once I have completed that treatment I will update on another of this site's topic forum for how it went.
I feel blessed that I found this site, as it helped me make some decisions about the above treatment that I am going to be starting, so thank you to ALL who discussed that particular one, and for all the other topics discussed as well.
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JWOE43 - Name: Justin
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2015
- Age at diagnosis: 40
Re: Greetings from St. Paul, Minnesota
Welcome to the forum, Justin. I am sorry that you have to be here though! I have always found the Beacon to be a helpful site too.
I hope that the next treatments of CyBorD (cyclophosphamide, bortezomib, dexamethasone) work well for you.
It sounds like you had a lot of radiation treatments, and that must have been tiring. I had radiation treatments due to having another cancer, besides myeloma. The process was not as bad as I thought it would be, fortunately.
Best wishes on your treatments, and let us know how everything is going.
I hope that the next treatments of CyBorD (cyclophosphamide, bortezomib, dexamethasone) work well for you.
It sounds like you had a lot of radiation treatments, and that must have been tiring. I had radiation treatments due to having another cancer, besides myeloma. The process was not as bad as I thought it would be, fortunately.
Best wishes on your treatments, and 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: Greetings from St. Paul, Minnesota
Welcome to the forum, Justin. Sorry you have to be here, but I'm glad you're finding the forum helpful.
I thought it might be helpful if you could clarify something. You say that you were diagnosed with multiple myeloma in February 2015. However, from this recent post that you made, https://myelomabeacon.org/forum/post55752.html#p55752, it seems that you have not received any drug treatments for the disease until just recently (or you'll soon be starting such treatments). That makes me wonder if your diagnosis was actually a solitary plasmacytoma, which can evolve into multiple myeloma (as it apparently has in your case), but doesn't progress in all patients.
Am I correct that you haven't had any drug treatments for your disease so far, and that all you've had is radiation treatments?
I thought it might be helpful if you could clarify something. You say that you were diagnosed with multiple myeloma in February 2015. However, from this recent post that you made, https://myelomabeacon.org/forum/post55752.html#p55752, it seems that you have not received any drug treatments for the disease until just recently (or you'll soon be starting such treatments). That makes me wonder if your diagnosis was actually a solitary plasmacytoma, which can evolve into multiple myeloma (as it apparently has in your case), but doesn't progress in all patients.
Am I correct that you haven't had any drug treatments for your disease so far, and that all you've had is radiation treatments?
Re: Greetings from St. Paul, Minnesota
Hi Terry,
I was very concerned with doing any type of drug treatment at the beginning of my journey, so I was on a every 3 month regimen of PET scans and blood work with my oncologist. I had lesions throughout my body, but my initial bone marrow biopsy that was performed back in February of 2015 showed that it wasn't in my marrow. As the years progressed, my M-spike progressively increased, but my scans would show stable one time, and mild progression at another. I started talking a year ago with my oncologist about starting Zometa, as it was to help strengthen my bones, so I began that in January of 2017. It helped keep it stable for a few scans, but then I ended up in the hospital about 4 weeks ago with severe hip pain. Fortunately, we found that my hip had popped out of place, and when it went back in, the pain went away.
While in the hospital, they performed a CT, x-rays, and another PET scan as I was due for one anyway. In those 3 different scans, it showed that I had lesions throughout my entire body. I met with my radiation doctor and my oncologist who specializes in myeloma, and both suggested that we do another bone marrow biopsy to see where we are at. I had that done last Friday, and got the results yesterday. It showed 50% saturation in my marrow.
We are starting the CyBorD treatments this coming Friday. I will be doing 16 treatments. 1 injection and pill every Friday. Once that is done, I am sure we will be doing another biopsy to see how that worked, along with blood work throughout my treatment.
Thank you for asking for clarification.
Justin
I was very concerned with doing any type of drug treatment at the beginning of my journey, so I was on a every 3 month regimen of PET scans and blood work with my oncologist. I had lesions throughout my body, but my initial bone marrow biopsy that was performed back in February of 2015 showed that it wasn't in my marrow. As the years progressed, my M-spike progressively increased, but my scans would show stable one time, and mild progression at another. I started talking a year ago with my oncologist about starting Zometa, as it was to help strengthen my bones, so I began that in January of 2017. It helped keep it stable for a few scans, but then I ended up in the hospital about 4 weeks ago with severe hip pain. Fortunately, we found that my hip had popped out of place, and when it went back in, the pain went away.
While in the hospital, they performed a CT, x-rays, and another PET scan as I was due for one anyway. In those 3 different scans, it showed that I had lesions throughout my entire body. I met with my radiation doctor and my oncologist who specializes in myeloma, and both suggested that we do another bone marrow biopsy to see where we are at. I had that done last Friday, and got the results yesterday. It showed 50% saturation in my marrow.
We are starting the CyBorD treatments this coming Friday. I will be doing 16 treatments. 1 injection and pill every Friday. Once that is done, I am sure we will be doing another biopsy to see how that worked, along with blood work throughout my treatment.
Thank you for asking for clarification.
Justin
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JWOE43 - Name: Justin
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2015
- Age at diagnosis: 40
Re: Greetings from St. Paul, Minnesota
Thanks, Justin, for those additional details of your diagnosis and what's happened since then. You've certainly gone an interesting path so far.
Do you recall what sort of M-spike and free light chain results you had at diagnosis? I would think their levels would have played a role in the decision to hold off on treatment for a while.
I find it interesting that there seems to have been a sudden change in the nature of your lesions, given the difference between your most recent PET and CT scans and your previous ones (which I assume were not too long ago). It's my impression that changes are usually more gradual, particularly in cases such as yours where the disease is in its earlier stages.
Take care,
Terry
Do you recall what sort of M-spike and free light chain results you had at diagnosis? I would think their levels would have played a role in the decision to hold off on treatment for a while.
I find it interesting that there seems to have been a sudden change in the nature of your lesions, given the difference between your most recent PET and CT scans and your previous ones (which I assume were not too long ago). It's my impression that changes are usually more gradual, particularly in cases such as yours where the disease is in its earlier stages.
Take care,
Terry
Re: Greetings from St. Paul, Minnesota
Honestly, I do not recall what they were at the initial diagnosis. I was so focused on the softball- sized tumor that had eaten my lower spine away, and the fact that it had to be surgically removed, that there were things I wasn't paying as much attention to at the time. Then there was the fact that I may never walk again that was being told to me due to the seriousness of the nerve damage that the tumor had created.
I was so focused on physical therapy after surgery, and then just working on my motor skills after that, that I was more interested in only doing radiation if necessary to treat any lesion that was high risk for fracture. My oncologist has wanted me to start drug treatment from day one; I was the one who put it on the back burner, and only treated with radiation.
I do not regret the decision I made, but now that time has passed, and I have had a lot of time to research different treatments, and am back to walking with only a cane, it was time to move forward and do more in way of treatment. My oncologist has always been supportive of my decisions, and has not pushed, which I appreciate, but he was quite pleased that I finally had come to a decision to do a treatment that he believes will be successful in my case.
As far as the lesions go, I have had many of them since the beginning, and my scans have been up and down over the past 3 years as far as progression. That being said, we have treated with radiation the ones that were of concern, but most of the lesions have not changed in size or depth on the bone, they have kinda just been hanging out so to speak. So, that is why we never targeted them for radiation. My hope now is that by doing the CyBorD treatment, we can treat the entire body, without me having to do infusion-based treatment, which is why I had refused to to start drug treatment in the past. I will be doing the injection once a week for 16 weeks. Plus, no PET scan now until after treatment is complete, so it gives me a break, as I have already had 4 PET scans this year.
I was so focused on physical therapy after surgery, and then just working on my motor skills after that, that I was more interested in only doing radiation if necessary to treat any lesion that was high risk for fracture. My oncologist has wanted me to start drug treatment from day one; I was the one who put it on the back burner, and only treated with radiation.
I do not regret the decision I made, but now that time has passed, and I have had a lot of time to research different treatments, and am back to walking with only a cane, it was time to move forward and do more in way of treatment. My oncologist has always been supportive of my decisions, and has not pushed, which I appreciate, but he was quite pleased that I finally had come to a decision to do a treatment that he believes will be successful in my case.
As far as the lesions go, I have had many of them since the beginning, and my scans have been up and down over the past 3 years as far as progression. That being said, we have treated with radiation the ones that were of concern, but most of the lesions have not changed in size or depth on the bone, they have kinda just been hanging out so to speak. So, that is why we never targeted them for radiation. My hope now is that by doing the CyBorD treatment, we can treat the entire body, without me having to do infusion-based treatment, which is why I had refused to to start drug treatment in the past. I will be doing the injection once a week for 16 weeks. Plus, no PET scan now until after treatment is complete, so it gives me a break, as I have already had 4 PET scans this year.
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JWOE43 - Name: Justin
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2015
- Age at diagnosis: 40
6 posts
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