Hello,
I am Judi. I have been lurking for about a month. 52-year-old female confirmed by bone biopsy of L1 spinal lesion on January 18. Blood work does not show proteins. Biopsy strongly positive for CD136 multiple myeloma.
Here's how we got to this point....
(I'm including everything over the last few years, in case anyone had similar experiences)
Long-term history of herniated disks and bone spurs at cervical, that were constant pain; and a herniation of lumbar that causes occasional flareups of sciatica. Chronic migraine. 10 years ago, I was diagnosed with fibromyalgia. I have been seeing a neurologist / pain specialist for around 10 years.
About 2 years ago, I started getting weaker and fatigued. I had severe neuropathy in my hands and feet. Started having night sweats.
About 1 1/2 years ago, I started having episodes of severe headache, high BP (200/100), and profuse sweating and dizziness. I ended up in the hospital for 3 days because they thought it was my heart. I failed the stress test and had a heart catherization; no blockages found.
These episodes have continued off and on, sometimes severe. They've been attributed to migraine.
Close to a year ago,the pain in my lower back changed and became more severe. I started stumbling frequently. I would wake in the middle of the night with severe leg pain. It was intermittent for months, and has been constant for about 6 months now. I became weaker but was still working full time.
At pain management, they didn't take the pain change seriously :/ I had stumbled / fell down the steps and hurt my right arm causing pain and swelling, but the doctor that examined it said that it was carpal tunnel.
Somewhere in here I became urine incontinent.
Finally October 31, I had a lumbar MRI. 2 osteolytic lesions were found. I had a bone scan that was negative and the radiologist argued with my doctor that he was sure it wasn't anything because the bone scan was negative. (I looked up negative bone scan and multiple myeloma pops right up.)
I had a CT scan, and it confirmed the lesions were osteolytic. At this point, it's mid December, and I am sent to an oncologist. He ordered blood work that is fairly normal, and CTs. Thoracic CT finds another lesion on T10, pleural thickening, and a small thyroid tumor. Pelvic CT shows the osteolytic lesions on L1 and S2 and multiple small renal lesions that are likely cysts. Also, I now have herniations in T4, 5 and from T10 -S1.
On January 3, that oncologist said that he was sure it wasn't multiple myeloma because of the lab results, He wasn't aware of thyroid and kidney lesions, and admitted he only read the MRI/CT summaries. He said he wasn't sure if the lesions were just degenerative disk disease, and that I don't "look sick". Still he orders a bone biopsy.
On January 16, the bone surgeon is greatly concerned about appearance of the lesions. January 18, I have the biopsy. I had severe pain a few days after and was sent to ER to be evaluated for infection. MRIs of thoracic and lumbar show that lesions have again increased in size.
Thoracic MRI makes note of T2 hyperintensity along the superior margin of the right eighth rib measuring 11 x 18 millimeter in size respectively that was seen on previous MRI several years ago (that I had due to severe pain in thoracic region)
When I went for the follow-up with the surgeon, he was sad to tell me that the biopsy says that it is definitely multiple myeloma. I was somewhat relieved in that I had feared it was spinal metastases from an unknown primary. Multiple myeloma sucks, but at least there are treatments. :/
The next day (January 31), I see the oncologist, He matter of factly says multiple myeloma and that he is going to do a bone marrow biopsy to plan treatment as well as a PET scan. No apology or admittance. :/ My daughter asks if the bone marrow is to stage and he says no, this is stage 3 and he wants to start treatment next week. Yesterday I had the biopsy, and I am waiting for the PET to be scheduled. At least the oncologist changed my pain medication, because what I was on hadn't been effective for months. I am not going to start treatment without a 2nd opinion.
I am doctor shopping because this man has my life in his hands and I do not trust him.
Back in mid December, I contacted the cancer center at Cleveland Clinic about these lesions, and they scheduled me with a spinal surgeon for a biopsy. The appointment was almost a month away. Two days before that appointment, I get a call that they had reviewed the MRIs and CTs and I was scheduled with the wrong doctor, and that they were giving me another appointment 2 weeks out. I went to that appointment Tuesday and it was a pain specialist that said I need to stop smoking and lose weight. Because, you know, that would make the myeloma pain go away. :/ She was very nice once she read my biopsy report.
While I was there, we walked over to the cancer center and talked to their schedulers about myeloma doctors, and gave them copies of all the labs and reports. Now I am waiting for my doctor to get the referral completed so I can get scheduled with him.
So that's where I am.
Forums
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judimcbry - Name: Judi
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Jan 2017 delayed
- Age at diagnosis: 52
Re: Coming late to the party
Judi,
Welcome to the forum, but as it is always said, I'm sorry you are here. So sorry you've such a terrible experience, but you'll find it is not uncommon for many multiple myeloma patients.
I will offer two comments you may have already read here many, many times.
1) Find a myeloma specialist to handle your care if you can. If that is not possible because of cost or distance, at least get a second opinion from a specialist. Multiple myeloma is simply too rare and too much is happening in research to guarantee a general oncologist or hematologist will be up to speed.
2) "Staging" is not as meaningful for prognosis or length of survival in multiple myeloma like it is in some other cancers. As I understand it, it is more telling about the amount of disease burden and involvement of other organs and systems, but generally has little to do with how well you might respond to treatment or how long your response might last.
Good luck. You've found a great place to learn and get support.
Welcome to the forum, but as it is always said, I'm sorry you are here. So sorry you've such a terrible experience, but you'll find it is not uncommon for many multiple myeloma patients.
I will offer two comments you may have already read here many, many times.
1) Find a myeloma specialist to handle your care if you can. If that is not possible because of cost or distance, at least get a second opinion from a specialist. Multiple myeloma is simply too rare and too much is happening in research to guarantee a general oncologist or hematologist will be up to speed.
2) "Staging" is not as meaningful for prognosis or length of survival in multiple myeloma like it is in some other cancers. As I understand it, it is more telling about the amount of disease burden and involvement of other organs and systems, but generally has little to do with how well you might respond to treatment or how long your response might last.
Good luck. You've found a great place to learn and get support.
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Mark Pouley - Name: Mark
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 53
Re: Coming late to the party
I'm sorry things have been so bad for you. I think you will find great comfort in the knowledge, compassion, and understating of this forum. Please keep us updated and let us know how things go!
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countrygirl - Name: Countrygirl
- Who do you know with myeloma?: IgG MGUS
- When were you/they diagnosed?: September 2016
- Age at diagnosis: 35
Re: Coming late to the party
Judi,
Argggh! What a frustrating journey so far.
Mark's comments were spot on. But I would add that the biopsy is good in that it will 100% confim a diagnosis of myeloma and it also gives you a benchmark for disease burden (your clonal bone marrow plasma cell percentage) that you can use in the future to see how well you are responding to treatment. It also identifies any key cytogenetic information (genetic mutations) that is useful when it comes to selecting the best drug treatment and/or indicating how aggressive your disease might be (low, medium or high risk disease).
I'm also surprised that you got misdirected to the completely wrong kind of specialist when you went to the Cleveland clinic. Dr. Jason Valent of the Cleveland Clinic is a contributing meyloma specialist on this forum, so you might want to try getting on his calendar. Dr. Matt Kalaycio is also a well-respected myeloma specialist at the Cleveland clinic.
If you let us know what city you are in, folks on this site can also recommend other facilities. However, the Cleveland Clinic does have a very good reputation in myeloma circles.
Argggh! What a frustrating journey so far.
Mark's comments were spot on. But I would add that the biopsy is good in that it will 100% confim a diagnosis of myeloma and it also gives you a benchmark for disease burden (your clonal bone marrow plasma cell percentage) that you can use in the future to see how well you are responding to treatment. It also identifies any key cytogenetic information (genetic mutations) that is useful when it comes to selecting the best drug treatment and/or indicating how aggressive your disease might be (low, medium or high risk disease).
I'm also surprised that you got misdirected to the completely wrong kind of specialist when you went to the Cleveland clinic. Dr. Jason Valent of the Cleveland Clinic is a contributing meyloma specialist on this forum, so you might want to try getting on his calendar. Dr. Matt Kalaycio is also a well-respected myeloma specialist at the Cleveland clinic.
If you let us know what city you are in, folks on this site can also recommend other facilities. However, the Cleveland Clinic does have a very good reputation in myeloma circles.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Coming late to the party
Thank you everyone. I am so thankful to this site because it has helped with education.
I also was absolutely shocked about how I was misdirected. Imagine if the day after you were diagnosed you saw a doctor that lectured you on how you need to handle your pain better by exercise?
Everything the last months has just drug out. 2 weeks to get each test scheduled. Back and forth on what this is. It scares me how much I have declined in the last 6 months.
Sorry for the rants
The latest conversation with the Cleveland Clinic was that I should wait for my oncologist here to give me the marrow results and upload everything to them, and then they will schedule me.
I also was absolutely shocked about how I was misdirected. Imagine if the day after you were diagnosed you saw a doctor that lectured you on how you need to handle your pain better by exercise?
Everything the last months has just drug out. 2 weeks to get each test scheduled. Back and forth on what this is. It scares me how much I have declined in the last 6 months.
Sorry for the rants
The latest conversation with the Cleveland Clinic was that I should wait for my oncologist here to give me the marrow results and upload everything to them, and then they will schedule me.
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judimcbry - Name: Judi
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Jan 2017 delayed
- Age at diagnosis: 52
Re: Coming late to the party
Hi Judy,
If I were in your position with obvious myeloma-related bone damage, the results of a lesion biopsy and a stage-3 diagnosis, I would be more assertive with the Cleveland Clinic on getting scheduled ASAP. Getting all the bone marrow biopsy results back will take some time, probably at least 10-14 days, if not longer. So, you could try to get something scheduled in the next two weeks in anticipation of them having the bone marrow biopsy results in hand at that time. Otherwise, you might be looking at waiting around at least another two weeks and then who knows how much longer to get an appointment with a specialist?
Also, your current oncologist's office should know how long it will take to get the bone marrow biopsy results back, so you may want to ask them as you sort all this out. Note that some bone marrow biopsy tests take longer to run than others, so make sure you ask when you can expect to have ALL of the results back.
I would also suggest asking for one of the doctors I recommend above or one that is recommended by others on this forum that go to the Cleveland Clinic (be clear that I don't have any personal experience with the Cleveland Clinic). It sounds like you are instead leaving the choice of doctors up to the Cleveland Clinic scheduling team? I know that the Cleveland Clinic has quite a few qualified multiple myeloma specialists and chances are you will be seen by a competent and experienced multiple myeloma specialist that's up on all the latest treatments and myriad nuances of multiple myeloma – but why leave that to chance?
Just my two cents ...
If I were in your position with obvious myeloma-related bone damage, the results of a lesion biopsy and a stage-3 diagnosis, I would be more assertive with the Cleveland Clinic on getting scheduled ASAP. Getting all the bone marrow biopsy results back will take some time, probably at least 10-14 days, if not longer. So, you could try to get something scheduled in the next two weeks in anticipation of them having the bone marrow biopsy results in hand at that time. Otherwise, you might be looking at waiting around at least another two weeks and then who knows how much longer to get an appointment with a specialist?
Also, your current oncologist's office should know how long it will take to get the bone marrow biopsy results back, so you may want to ask them as you sort all this out. Note that some bone marrow biopsy tests take longer to run than others, so make sure you ask when you can expect to have ALL of the results back.
I would also suggest asking for one of the doctors I recommend above or one that is recommended by others on this forum that go to the Cleveland Clinic (be clear that I don't have any personal experience with the Cleveland Clinic). It sounds like you are instead leaving the choice of doctors up to the Cleveland Clinic scheduling team? I know that the Cleveland Clinic has quite a few qualified multiple myeloma specialists and chances are you will be seen by a competent and experienced multiple myeloma specialist that's up on all the latest treatments and myriad nuances of multiple myeloma – but why leave that to chance?
Just my two cents ...
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Coming late to the party
Thank you so much. I am going to try to get an appointment with Dr Valent today. I see my PCP this afternoon, so if I need to send a referral, she can do that then.
The preliminary results for the bone marrow are up in mychart. Even though I have a nurse background, I know nothing about any of this. Most is Greek to me. It does say 95% kappa.
Thank you so much for the advice and support. This site is the only place I have found to get real information.
The preliminary results for the bone marrow are up in mychart. Even though I have a nurse background, I know nothing about any of this. Most is Greek to me. It does say 95% kappa.
Thank you so much for the advice and support. This site is the only place I have found to get real information.
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judimcbry - Name: Judi
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Jan 2017 delayed
- Age at diagnosis: 52
Re: Coming late to the party
Wonderful update. I have an appointment with Dr. Valent on Thursday afternoon!
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judimcbry - Name: Judi
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Jan 2017 delayed
- Age at diagnosis: 52
Re: Coming late to the party
That's great news Judy! Here are some tips on what to do at your appointment:
You definitely want to walk away from your appointment with copies of all your lab reports. You also specifically want to know the following lab values, so be sure to ask Dr. Valent what these values are (including the units of measure). These are the key markers you will want to personally understand and track over time:
- M-spike (aka paraprotein, M-protein, abnormal protein band, etc)
- Serum lambda and kappa free light chain values, including the ratio
- Immunoglobulin levels (IgG, IgA, IgM)
- Hemoglobin and red blood cell levels, creatinine and calcium levels.
You want to know what kind of myeloma "istoype" you have (IgG kappa, IgA lambda, etc). This shows up on what is called a serum immunofixation test.
Have Dr. Valent explain the meaning behind any of your lab values that are out of range.
If Dr. Valent has the results of the bone marrow biopsy, ask him to explain the key findings (clonal bone marrow plasma cell percentage, key cytogenetics, etc). These reports are very difficult for a layman to interpret, but knowing this information is important.
Ask him specifically which drugs he is recommending for treatment and what their likely side effects will be.
Given your bone damage to date, is he recommending a bisphosphonate such as Zometa to treat your bones and to prevent further damage?
If Dr. Valent suggests an autologous transplant as part of your treatment plan, ask him why he wants to do one upfront and have a discussion about the tradeoffs of not doing one and/or delaying the transplant until relapse so that you understand all of your options and can make an informed decision about a transplant.
Lastly, I would write down all of your questions beforehand and take a smartphone or other recording device (or friend) to record your meeting. You will likely get bombarded with a lot of info and will get sidetracked and won't likely remember all of the points that the doctor makes. Most everyone feels like "Bambi in the headlights" at these appointments .
Let us know how things go and good luck!
You definitely want to walk away from your appointment with copies of all your lab reports. You also specifically want to know the following lab values, so be sure to ask Dr. Valent what these values are (including the units of measure). These are the key markers you will want to personally understand and track over time:
- M-spike (aka paraprotein, M-protein, abnormal protein band, etc)
- Serum lambda and kappa free light chain values, including the ratio
- Immunoglobulin levels (IgG, IgA, IgM)
- Hemoglobin and red blood cell levels, creatinine and calcium levels.
You want to know what kind of myeloma "istoype" you have (IgG kappa, IgA lambda, etc). This shows up on what is called a serum immunofixation test.
Have Dr. Valent explain the meaning behind any of your lab values that are out of range.
If Dr. Valent has the results of the bone marrow biopsy, ask him to explain the key findings (clonal bone marrow plasma cell percentage, key cytogenetics, etc). These reports are very difficult for a layman to interpret, but knowing this information is important.
Ask him specifically which drugs he is recommending for treatment and what their likely side effects will be.
Given your bone damage to date, is he recommending a bisphosphonate such as Zometa to treat your bones and to prevent further damage?
If Dr. Valent suggests an autologous transplant as part of your treatment plan, ask him why he wants to do one upfront and have a discussion about the tradeoffs of not doing one and/or delaying the transplant until relapse so that you understand all of your options and can make an informed decision about a transplant.
Lastly, I would write down all of your questions beforehand and take a smartphone or other recording device (or friend) to record your meeting. You will likely get bombarded with a lot of info and will get sidetracked and won't likely remember all of the points that the doctor makes. Most everyone feels like "Bambi in the headlights" at these appointments .
Let us know how things go and good luck!
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Coming late to the party
Thank you so much for the suggestions!
My daughter is trying to create a binder to keep track of everything. I've been collecting the disks and reports for each test I have had so far. I haven't started treatment, and already buried in paper.
My blood labs are mostly normal. Appears I am a nonsecretor? The only place the multiple myeloma is showing is in the biopsies
The extended light chain test shows a kappa ratio of 214%. The 24-hour urine protein was doubled and creatinine was 155, with kappa light chains. :/ I can't make heads or tails out of the marrow biopsy, hopefully will gain some understanding there.
More than a little concerned about my kidneys – multiple small lesions were found on CT and MRI. I have been passing trace amounts of blood for several years. I have also been having occasional traces of blood rectally very randomly but colonoscopy was OK.
As for the bone lesions, the one on S2 is most concerning. Recent MRI notes that it has reached the posterior edge. If that vertebra goes, I'm in trouble. Hopefully they'll be able to fixate it.
I don't know. I'll wait to see what Dr Valent says. Is this multiple myeloma, light chain deposition disease (LCDD), both, or something else?
It seems something in these recent labs triggered the appointment being scheduled so quickly. I got a call from the local oncologist's office that they were referring me and had just sent reports to the cancer center. I called (half expecting another run around) and was able to get scheduled. The scheduler was surprised that Dr. Valent had an opening that soon and hurried to snag it for me.
Need to trust God's timing and not my own.
My daughter is trying to create a binder to keep track of everything. I've been collecting the disks and reports for each test I have had so far. I haven't started treatment, and already buried in paper.
My blood labs are mostly normal. Appears I am a nonsecretor? The only place the multiple myeloma is showing is in the biopsies
The extended light chain test shows a kappa ratio of 214%. The 24-hour urine protein was doubled and creatinine was 155, with kappa light chains. :/ I can't make heads or tails out of the marrow biopsy, hopefully will gain some understanding there.
More than a little concerned about my kidneys – multiple small lesions were found on CT and MRI. I have been passing trace amounts of blood for several years. I have also been having occasional traces of blood rectally very randomly but colonoscopy was OK.
As for the bone lesions, the one on S2 is most concerning. Recent MRI notes that it has reached the posterior edge. If that vertebra goes, I'm in trouble. Hopefully they'll be able to fixate it.
I don't know. I'll wait to see what Dr Valent says. Is this multiple myeloma, light chain deposition disease (LCDD), both, or something else?
It seems something in these recent labs triggered the appointment being scheduled so quickly. I got a call from the local oncologist's office that they were referring me and had just sent reports to the cancer center. I called (half expecting another run around) and was able to get scheduled. The scheduler was surprised that Dr. Valent had an opening that soon and hurried to snag it for me.
Need to trust God's timing and not my own.
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judimcbry - Name: Judi
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Jan 2017 delayed
- Age at diagnosis: 52
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