During a business trip to Seattle in December, I was in the process of preparing for my return trip at 3 a.m. for an early flight back to Florida when I experienced the worst muscle spasms ever that knocked me back into the tub at a Hilton on the 28th floor. The spasms were so bad that I could not move after falling back into the tub. After throwing myself out of the tub, I crawled two hours with my elbows to the bed to call 911.
After calling 911, the ambulance with little training came and said my back was ok and it was just muscle spasms and used a sheet to bend me still with spasms. I was taken to the hospital that just tried to give me meds and FORCE me to walk even though I could not walk. No MRI, no xray, no nothing. I had to call my insurance company to force them to admit me to the doctor. After finally being admitted I spent five days in the hospital with continued threats from the physical therapist to walk or else. After five days they forced me to leave the hospital even though I could not walk without extreme pain and I was wheeled out of the hospital in a gurney because the pain when even sitting. They released me still without any diagnostic test or prognosis.
After flying back to Florida after having a friend hold me all the way to the airport, I went to a chiropractor who referred me for an MRI. The MRI showed a mass at L3 that ended up being myeloma. I had back surgery on December 24th and then in the first part of January started seeing a myeloma specialist at Cleveland Clinic in South Florida. It's still hard to believe I spent a week in the hospital in Seattle with no test being conducted and with physical therapist threatening and forcing me to try to work. I am thankful for good care in Florida because already my back pain is a past event and I was able to walk without pain in January for 5+ miles per days.
All my blood numbers have been good but my kappa light numbers were 1028 at the end of January. I was told I was in stage one under both criteria since my albumin and B numbers were good. I was also told I have a standard risk with my genetics. I have had three weeks of Velcade, dex, and Revlimid so far. After one week, my kappa light number had decreased by half. It was suggested that because of my age I should have the stem cell transplant after four cycles of weeks weeks of therapy. In the middle of January I had PET scan which showed no other problems.
Last week, my ALT numbers were elevated to 68 which scared me and I hope these numbers go down. So far on the therapy I have had severe shaking and bone pain but I will take these side effects if my cancer numbers decrease.
Some of the questions I have is just what can I expect going forward? It appears from all my reading that someone with myeloma can be in really good shape one moment and then go downhill with organ failure the next. This is what has me the most worried.
Note: I am very thankful I had the back surgery where they filled my L3 that had a 90% compression fracture. I read where people do not have the surgery. I cannot imagine not having the surgery back in December. I know that the surgery in large part has to do with the doctor who performs the surgery, but I highly recommend anyone considering the surgery to repair a compression fracture to have the surgery and not wait.
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Aclinkboca - Name: AC
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Dec 2015
- Age at diagnosis: 46
Re: Newly diagnosed while traveling
Holy cow, what a story! I'm so sorry you suffered like that in Seattle. How horrible!
I'm not sure if you have the time or energy for this, but you should consider letting the doctors in Seattle know what happened. Being a doctor, I can say that it's really important for doctors to have feedback about the outcome of their "cases" in order to improve their diagnostic acumen. And by this, I don't mean, "You treated me horribly, and you're an awful doctor", as a lot of people would say (not necessarily you, but a lot of people would). Without knowing the particulars, it does seem they treated you horribly. But this is a terribly simplified version of things, and doesn't do anything to improve things for the future.
What I DO mean is that I'm sure those doctors didn't WANT to miss a lumbar cancer mass. They were careless, or really pressed for time, or didn't know better (given the particular circumstances), or a thousand other reasons. Again, I don't know the particulars of your circumstances, but in general, it's really quite difficult to decide who should get imaging for back pain/ spasms and who doesn't need it. The differences between people with "benign" back pain (i.e. back pain that just goes away on its own and does not need any intervention in order to do so) and people with "pathologic" back pain (back pain due to some other process that will not resolve on its own, which can get worse and result in disability, and which needs to be diagnosed now in order to begin treatment and limit the resulting disability) are surprisingly subtle. It's not easy. But clearly they missed some sign, symptom or physical exam finding that indicated that your back pain might be pathologic.
So they should know that right after you came home you had an MRI and it turns out you had a myeloma mass at L3 with compression fracture. They should know that your back pain turned out to be the pathologic kind. I can bet you they will review in their minds every aspect of your case, and re-evaluate your symptoms and physical exam findings in that light. They will be able to refine their understanding of both myeloma, and back pain. They will learn from this, and I can bet you that they won't miss that kind of thing ever again in their careers. They'll be better doctors for it. And their future patients will also be better for it.
I'm so glad you are improved and are feeling better now. What a relief. I hope you get good results from you treatments. Let us know how things go.
I'm not sure if you have the time or energy for this, but you should consider letting the doctors in Seattle know what happened. Being a doctor, I can say that it's really important for doctors to have feedback about the outcome of their "cases" in order to improve their diagnostic acumen. And by this, I don't mean, "You treated me horribly, and you're an awful doctor", as a lot of people would say (not necessarily you, but a lot of people would). Without knowing the particulars, it does seem they treated you horribly. But this is a terribly simplified version of things, and doesn't do anything to improve things for the future.
What I DO mean is that I'm sure those doctors didn't WANT to miss a lumbar cancer mass. They were careless, or really pressed for time, or didn't know better (given the particular circumstances), or a thousand other reasons. Again, I don't know the particulars of your circumstances, but in general, it's really quite difficult to decide who should get imaging for back pain/ spasms and who doesn't need it. The differences between people with "benign" back pain (i.e. back pain that just goes away on its own and does not need any intervention in order to do so) and people with "pathologic" back pain (back pain due to some other process that will not resolve on its own, which can get worse and result in disability, and which needs to be diagnosed now in order to begin treatment and limit the resulting disability) are surprisingly subtle. It's not easy. But clearly they missed some sign, symptom or physical exam finding that indicated that your back pain might be pathologic.
So they should know that right after you came home you had an MRI and it turns out you had a myeloma mass at L3 with compression fracture. They should know that your back pain turned out to be the pathologic kind. I can bet you they will review in their minds every aspect of your case, and re-evaluate your symptoms and physical exam findings in that light. They will be able to refine their understanding of both myeloma, and back pain. They will learn from this, and I can bet you that they won't miss that kind of thing ever again in their careers. They'll be better doctors for it. And their future patients will also be better for it.
I'm so glad you are improved and are feeling better now. What a relief. I hope you get good results from you treatments. Let us know how things go.
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Tracy J - Name: Tracy Jalbuena
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2014
- Age at diagnosis: 42
Re: Newly diagnosed while traveling
Welcome to the forum Boca,
It seems some plasmacytoma cases are diagnosed as sciatica or back strain until the patient returns a few times and finally an MRI is done – especially when there is no renal or anemia involvement.
It seems some plasmacytoma cases are diagnosed as sciatica or back strain until the patient returns a few times and finally an MRI is done – especially when there is no renal or anemia involvement.
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: Newly diagnosed while traveling
Hi Aclinkboca ,
Leapin' lizards! What a story. Glad it ended up working out OK.
I wanted to comment on your statement "It appears from all my reading that someone with myeloma can be in really good shape one moment and then go downhill with organ failure the next. This is what has me the most worried".
I'm smoldering and therefore clearly haven't experienced organ failure myself. However, I'm obviously on the lookout for organ failure (CRAB). I think you can see usually see organ damage coming if you are routinely getting periodic lab tests (testing frequency depends on your particular situation), routinely imaged and are graphing your key markers. I believe that any catastrophic follow-on organ damage (the likes of which you experienced in Seattle) shouldn't hit you out of the blue if you are being routinely monitored/screened. I would love to hear from anybody that has experienced otherwise while being routinely screened after diagnosis.
Leapin' lizards! What a story. Glad it ended up working out OK.
I wanted to comment on your statement "It appears from all my reading that someone with myeloma can be in really good shape one moment and then go downhill with organ failure the next. This is what has me the most worried".
I'm smoldering and therefore clearly haven't experienced organ failure myself. However, I'm obviously on the lookout for organ failure (CRAB). I think you can see usually see organ damage coming if you are routinely getting periodic lab tests (testing frequency depends on your particular situation), routinely imaged and are graphing your key markers. I believe that any catastrophic follow-on organ damage (the likes of which you experienced in Seattle) shouldn't hit you out of the blue if you are being routinely monitored/screened. I would love to hear from anybody that has experienced otherwise while being routinely screened after diagnosis.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Newly diagnosed while traveling
I agree. If your myeloma specialist is watching your lab numbers, you can usually see organ failure coming.
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dogmom - Who do you know with myeloma?: husband
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 58
Re: Newly diagnosed while traveling
Tracy,
Thank you for your reply and info. In the middle of January, I called the hospital to let them know what happened. I even signed off so the Seattle hospital could receive all my medical and imaging from Florida so they could conduct a review.
I truly hope the doctors and physical therapist learn from my case with their future patients.
Thank you for your reply and info. In the middle of January, I called the hospital to let them know what happened. I even signed off so the Seattle hospital could receive all my medical and imaging from Florida so they could conduct a review.
I truly hope the doctors and physical therapist learn from my case with their future patients.
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Aclinkboca - Name: AC
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Dec 2015
- Age at diagnosis: 46
Re: Newly diagnosed while traveling
Wow! What a remarkable story! I am glad you followed it up with the doctors in Seattle. Like with my sister, I feel that even the medical profession and even some oncologists do not know enough about multiple myeloma to recognize the signs. I hope you treatment goes well.
Can I ask who is your specialist in Cleveland clinic? I am also in South Florida. Though my sister is abroad, it is good to know which specialists can be consulted locally in case we choose to have a second opinion.
Can I ask who is your specialist in Cleveland clinic? I am also in South Florida. Though my sister is abroad, it is good to know which specialists can be consulted locally in case we choose to have a second opinion.
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Gala - Name: Gala
- Who do you know with myeloma?: sister, LgA-k
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 48
Re: Newly diagnosed while traveling
Gala,
At Cleveland Clinic, I see Chakra Chaulagain, MD. I do not have enough good things to say about Dr. C.
Sorry to hear about your sister in Russia. I hear more and more about cases where doctors misdiagnose the patient like what happened to myself and your little sister. I heard this week from a doctor about a patient who went to multiple doctors and even an oncologist that did not properly diagnose the patient with myeloma until it was at the stage where your sister was diagnosed. This patient this week was told he was in complete remission.
I am interested in your other post on why your sister was ruled out from the stem cell transplant. I am 46 and already talking with the transplant team at University of Miami. I know patients who are going to Moffit who even have to have a stem cell transplant and liver transplant, which Moffit will do. You might inquire to see if the answer was specific to Russia or if there is a medical reason. From your information that it is your younger sister, she should be a good candidate to use her own stem cells for the transplant instead of using match.
I wish your sister the best of luck recovering.
AC
At Cleveland Clinic, I see Chakra Chaulagain, MD. I do not have enough good things to say about Dr. C.
Sorry to hear about your sister in Russia. I hear more and more about cases where doctors misdiagnose the patient like what happened to myself and your little sister. I heard this week from a doctor about a patient who went to multiple doctors and even an oncologist that did not properly diagnose the patient with myeloma until it was at the stage where your sister was diagnosed. This patient this week was told he was in complete remission.
I am interested in your other post on why your sister was ruled out from the stem cell transplant. I am 46 and already talking with the transplant team at University of Miami. I know patients who are going to Moffit who even have to have a stem cell transplant and liver transplant, which Moffit will do. You might inquire to see if the answer was specific to Russia or if there is a medical reason. From your information that it is your younger sister, she should be a good candidate to use her own stem cells for the transplant instead of using match.
I wish your sister the best of luck recovering.
AC
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Aclinkboca - Name: AC
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Dec 2015
- Age at diagnosis: 46
Re: Newly diagnosed while traveling
Anthony, thank you very much for your comment. It is good to know that your treatment is progressing well and you are talking to the transplant team. I hope it is successful. It is also reassuring to hear about the patient who achieved remission following a delayed diagnosis.
Yes, I am also concerned about my sister's transplant situation and will try and get more information. From what I know at this point, my family was told that they would not be able to collect her stem cells considering her advanced cancer. I am not convinced, as I read patients stories who had auto transplants with advanced myeloma. I suspect, the chemo she is getting is too aggressive. I will keep pushing for more information and inform my family about what I know, so that they could advocate for her.
Yes, I am also concerned about my sister's transplant situation and will try and get more information. From what I know at this point, my family was told that they would not be able to collect her stem cells considering her advanced cancer. I am not convinced, as I read patients stories who had auto transplants with advanced myeloma. I suspect, the chemo she is getting is too aggressive. I will keep pushing for more information and inform my family about what I know, so that they could advocate for her.
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Gala - Name: Gala
- Who do you know with myeloma?: sister, LgA-k
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 48
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