My kappa free light chain myeloma is now in complete response, as measured by the free light chain test.
And yet, my worst symptom by far, excruciating bone pain, has not improved. I have also had two kyphoplasty procedures and have been on Zometa for over a year.
I finally convinced my oncologist to do a PET/CT scan, and the radiologist confirmed activity in my bones, but could not determine whether the activity was osteoblastic healing or active myeloma, although my oncologist assures me that it could not be myeloma due to what the free light chain test shows,
This is all very discouraging, especially since I have read multiple posts on the forum, by both myeloma experts and patients, that successful treatment with chemotherapy and bisphosphonates generally reduces bone pain.
In my case, that has not happened. I need to spend most of my time in bed, just as I did when I was first diagnosed over a year ago. I can't drive, and I can't walk more than 1/2 miles before the intense pain stops me. Even just standing or sitting for more than a few minutes is intolerably painful.
I am also using 125 mcgs of Fentanyl patches every 72 hours, and 15 mg tablets of Oxycodone for breakthrough pain. Today I am off to see a pain specialist because even these powerful meds do not help very much.
What is the point of obtaining a complete response, if the symptoms of the disease, especially the ones that have ruined your quality of life, do not improve? It makes no sense to me!
Forums
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: Persistent bone pain despite complete response
Spud:
You know, I really hate steroids. I detest them. Side effects make them extremely difficult to take. Such that, despite doctor's suggestion, I don't take them until the pain and inflammation is intolerable.
Revlimid and furosemide (Lasix) are wiping out my potassium stores. Supplements weren't keeping up. Potassium-sparing diuretic prescribed (short course). Amazing relief from pain and inflammation.
Visit with your doc?
Good luck.
You know, I really hate steroids. I detest them. Side effects make them extremely difficult to take. Such that, despite doctor's suggestion, I don't take them until the pain and inflammation is intolerable.
Revlimid and furosemide (Lasix) are wiping out my potassium stores. Supplements weren't keeping up. Potassium-sparing diuretic prescribed (short course). Amazing relief from pain and inflammation.
Visit with your doc?
Good luck.
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Rneb
Re: Persistent bone pain despite complete response
Thank you, Rneb.
I saw the pain doc and he is planning on doing an epidural injection to block the main source of my pain -- lower back. He did mention steroids as another possibility, and I have been taking 20 mg of dexamethasone along with each of my twice weekly Kyprolis infusions.
Problem is, I have been on steroids at higher doses -- prednisone, specifically, and it did not help much for whatever reason.
I will post the results of the epidural. Turns out I need to have a fresh MRI of the area to rule out the possibility of a plasmacytoma first, since injecting into one of those increases the risk of bleeding from the injection, which is something to avoid.
The pain doc also rattled off other options, so I feel more hopeful about finally getting on top of this pain.
Thanks again for the suggestion.
I saw the pain doc and he is planning on doing an epidural injection to block the main source of my pain -- lower back. He did mention steroids as another possibility, and I have been taking 20 mg of dexamethasone along with each of my twice weekly Kyprolis infusions.
Problem is, I have been on steroids at higher doses -- prednisone, specifically, and it did not help much for whatever reason.
I will post the results of the epidural. Turns out I need to have a fresh MRI of the area to rule out the possibility of a plasmacytoma first, since injecting into one of those increases the risk of bleeding from the injection, which is something to avoid.
The pain doc also rattled off other options, so I feel more hopeful about finally getting on top of this pain.
Thanks again for the suggestion.
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: Persistent bone pain despite complete response
Hi, Patricia here! 
My pain management doctor has me currently on a morphine extended release and Norco every 6 hours as needed for breakthrough pain. Perhaps you might find one or both of those more helpful to you?
I was wondering about the fentanyl though, I have noticed that as the months have gone by, the morphine is just not cutting it for me.
Of course, it was administered way back before the shoulders became affected and added to the party. *sigh* 
I hope that whatever happens, your docs get you some relief! God bless you and give you just a moment of this day in an absolute pain free place. xoxo Love!!
My pain management doctor has me currently on a morphine extended release and Norco every 6 hours as needed for breakthrough pain. Perhaps you might find one or both of those more helpful to you?
I was wondering about the fentanyl though, I have noticed that as the months have gone by, the morphine is just not cutting it for me.
Of course, it was administered way back before the shoulders became affected and added to the party. *sigh* I hope that whatever happens, your docs get you some relief! God bless you and give you just a moment of this day in an absolute pain free place. xoxo Love!!
Re: Persistent bone pain despite complete response
Thank you very much, Patricia, for your suggestion and your kind words.
I may try morphine or other medications now that I am under the care of a doctor who specializes in pain management. He told me that he feels confident that he will be able to address my persistent pain issue, and that in itself has made me feel better.
The bone pain is really my most bothersome symptom by far, and the fact that it continues at a high level despite blood tests that show a complete response to my current therapy, and despite over a year on Zometa, is very frustrating.
I hope to have better news to report soon.
Given my experience, I would encourage anyone suffering from unrelieved pain to consult a pain specialist as soon as possible if your oncologist or primary care doctor has not been successful in helping you find relief. I regret waiting as long as I did before contacting one. I kept hoping that, as my free kappa light chain numbers decreased and my time on Zometa increased, the bone pain would improve. It just didn't happen.
In the USA, medical doctors can be certified in pain management by the American Board of Pain Medicine, or by other specialty boards -- for example, the American Board of Anesthesiology. I would also make sure that any pain doctor one chooses has experience with cancer pain, and more specifically, myeloma bone pain, if possible.
I may try morphine or other medications now that I am under the care of a doctor who specializes in pain management. He told me that he feels confident that he will be able to address my persistent pain issue, and that in itself has made me feel better.
The bone pain is really my most bothersome symptom by far, and the fact that it continues at a high level despite blood tests that show a complete response to my current therapy, and despite over a year on Zometa, is very frustrating.
I hope to have better news to report soon.
Given my experience, I would encourage anyone suffering from unrelieved pain to consult a pain specialist as soon as possible if your oncologist or primary care doctor has not been successful in helping you find relief. I regret waiting as long as I did before contacting one. I kept hoping that, as my free kappa light chain numbers decreased and my time on Zometa increased, the bone pain would improve. It just didn't happen.
In the USA, medical doctors can be certified in pain management by the American Board of Pain Medicine, or by other specialty boards -- for example, the American Board of Anesthesiology. I would also make sure that any pain doctor one chooses has experience with cancer pain, and more specifically, myeloma bone pain, if possible.
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: Persistent bone pain despite complete response
Hello,
I don't want to be a negative Nelly, but your doctor's assertion that you can't have activity with your light chains as they are is false.
ALL of my husband's markers have been "normal" since his stem cell transplant 4 years ago, but that hasn't stopped him from having more than 2 dozen plasmacytomas (including bone involvement) - several of which were biopsied, so we know they're myeloma - since then.
I'm not trying to say your bone pain is active myeloma - just that it shouldn't be completely dismissed based on your blood tests.
Wishing you the best.
I don't want to be a negative Nelly, but your doctor's assertion that you can't have activity with your light chains as they are is false.
ALL of my husband's markers have been "normal" since his stem cell transplant 4 years ago, but that hasn't stopped him from having more than 2 dozen plasmacytomas (including bone involvement) - several of which were biopsied, so we know they're myeloma - since then.
I'm not trying to say your bone pain is active myeloma - just that it shouldn't be completely dismissed based on your blood tests.
Wishing you the best.
Re: Persistent bone pain despite complete response
Thank you, Ladyaero.
First of all, I am so sorry to hear about your husband's development of plasmacytomas, and I hope he is getting effective treatment for them. Please accept my best wishes for his full recovery.
May I ask you a few follow-up questions, because I am actually very concerned that the continuing bone pain means my myeloma is also still active, despite the results of the light chain assays.
Once the plasmacytomas were discovered, how did your husband's oncologist explain their presence despite what the blood markers showed?
You mentioned in an earlier post that he has developed a completely non-secretory myeloma clone. Does his doctor think this non-secretory variant was there all along, or that it emerged after the transplant?
Finally, what type of myeloma was he initially diagnosed with, and what kinds of tests (markers) were used to monitor it during treatment?
Thank you again so much for sharing, and all the best to you and to your husband.
First of all, I am so sorry to hear about your husband's development of plasmacytomas, and I hope he is getting effective treatment for them. Please accept my best wishes for his full recovery.
May I ask you a few follow-up questions, because I am actually very concerned that the continuing bone pain means my myeloma is also still active, despite the results of the light chain assays.
Once the plasmacytomas were discovered, how did your husband's oncologist explain their presence despite what the blood markers showed?
You mentioned in an earlier post that he has developed a completely non-secretory myeloma clone. Does his doctor think this non-secretory variant was there all along, or that it emerged after the transplant?
Finally, what type of myeloma was he initially diagnosed with, and what kinds of tests (markers) were used to monitor it during treatment?
Thank you again so much for sharing, and all the best to you and to your husband.
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: Persistent bone pain despite complete response
Mr. Potatohead,
You have posed very important questions. I have been wondering about these issues myself. My doctors have advised me that there would be something in the blood work that would raise flags, and yet several times I have read here in the Beacon of instances where plasmacytomas appeared when the blood work all seemed fine.
I hope that Ladyaero will read your posting and respond very thoroughly because there must be a few others besides you and myself who are interested.
You have posed very important questions. I have been wondering about these issues myself. My doctors have advised me that there would be something in the blood work that would raise flags, and yet several times I have read here in the Beacon of instances where plasmacytomas appeared when the blood work all seemed fine.
I hope that Ladyaero will read your posting and respond very thoroughly because there must be a few others besides you and myself who are interested.
Re: Persistent bone pain despite complete response
Mr Potatohead,
I could have written your exact post.
I'm so frustrated that I don't feel better than I do. I have severe pain in my joints and back. I can still drive, but I don't unless it is reasonably close to the house. I can't take my pain pills on the day I have to drive. Since I take 120 mg of long lasting morphine along with 30 mg of immediate acting morphine three times a day, with very little relief, it really bums me out that I still have to be in bed or lying down a lot of the time. My feet and hands have so much arthritis pain by dinner time, I can barely stand or sit. Some of that pain is due to the fact that I have diabetes also, thusly, the nerve damage is compounded and the gabapentin I take has never done anything for it.
I think it is a cruel and misleading thing to go through so much pain and illness during chemo, only to basically still have all the same issues physically at time of complete remission (CR).
Don't get me wrong, I'm happy to be alive, 99% of the time.
I've had the shots and they don't do anything for me. I'm going through the series of shots again because I was just sent back to the pain management doctor I had prior to my multiple myeloma diagnosis. My onc had taken over pain management when he first started treating me. Since I'm only seeing him every 3 months now, he turned me back to the pain doc.
They did X-rays and CT and said they could see problems in my back, but it was nothing that was bad enough to do surgery. It's great that they can say that while I'm standing there in gradually worsening pain every day. I understand they have to see it to try to fix it. But it's as if they're saying, "we don't see it, so there is nothing there "and your pain must be from a strain or something. No doctor has ever said that to me, but you know what I mean.
I pray you find relief and relay it to us and we all live pain free ever after!
Amen
Joe
I could have written your exact post.
I'm so frustrated that I don't feel better than I do. I have severe pain in my joints and back. I can still drive, but I don't unless it is reasonably close to the house. I can't take my pain pills on the day I have to drive. Since I take 120 mg of long lasting morphine along with 30 mg of immediate acting morphine three times a day, with very little relief, it really bums me out that I still have to be in bed or lying down a lot of the time. My feet and hands have so much arthritis pain by dinner time, I can barely stand or sit. Some of that pain is due to the fact that I have diabetes also, thusly, the nerve damage is compounded and the gabapentin I take has never done anything for it.
I think it is a cruel and misleading thing to go through so much pain and illness during chemo, only to basically still have all the same issues physically at time of complete remission (CR).
Don't get me wrong, I'm happy to be alive, 99% of the time.
I've had the shots and they don't do anything for me. I'm going through the series of shots again because I was just sent back to the pain management doctor I had prior to my multiple myeloma diagnosis. My onc had taken over pain management when he first started treating me. Since I'm only seeing him every 3 months now, he turned me back to the pain doc.
They did X-rays and CT and said they could see problems in my back, but it was nothing that was bad enough to do surgery. It's great that they can say that while I'm standing there in gradually worsening pain every day. I understand they have to see it to try to fix it. But it's as if they're saying, "we don't see it, so there is nothing there "and your pain must be from a strain or something. No doctor has ever said that to me, but you know what I mean.
I pray you find relief and relay it to us and we all live pain free ever after!
Amen
Joe
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JoeS - Name: Joe
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Sept. 2013
- Age at diagnosis: 56
Re: Persistent bone pain despite complete respo
Hi Joe,
Yes, bummer is the word for this situation. Like you, I'm grateful for the complete response I have achieved. Much better to be around to enjoy this beautiful world and my friends and family. But the pain sure does exact its pound of flesh, detracting from everything.
I just keep hoping I'll find the answer. If the shots don't work (and sorry to hear they didn't for you), there's got to be other things to try.
In my case, there are days when the pain abates a bit; I just don't know why, nor do I know how to sustain the relief when it does come.
I have had two kyphoplasty procedures, and they have helped a bit, but the magic button eludes me. As in your case, the orthopedic guys can't find anything specific enough to go after and content themselves with pointing out how much damage there is.
I will keep posting to this thread about my results with my pain doctor's bag of tricks. Perhaps something will work.
Prayers are always worth the effort. Thanks for yours, and know that you are in mine as well.
Amen, indeed, Joe.
Yes, bummer is the word for this situation. Like you, I'm grateful for the complete response I have achieved. Much better to be around to enjoy this beautiful world and my friends and family. But the pain sure does exact its pound of flesh, detracting from everything.
I just keep hoping I'll find the answer. If the shots don't work (and sorry to hear they didn't for you), there's got to be other things to try.
In my case, there are days when the pain abates a bit; I just don't know why, nor do I know how to sustain the relief when it does come.
I have had two kyphoplasty procedures, and they have helped a bit, but the magic button eludes me. As in your case, the orthopedic guys can't find anything specific enough to go after and content themselves with pointing out how much damage there is.
I will keep posting to this thread about my results with my pain doctor's bag of tricks. Perhaps something will work.
Prayers are always worth the effort. Thanks for yours, and know that you are in mine as well.
Amen, indeed, Joe.
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
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