Hello all,
I am from England and follow this site a lot and find it extremely useful as I am still trying to understand this illness. I have posted once before and people were very helpful. Something else has happened now and I wondered if anybody has any thoughts.
My wife was diagnosed with MGUS last March and, at that time, had a skeletal survey which was clear and her bone marrow biopsy (BMB) was 4%. Her M spike was IgG and was 1.4 g/dL (14 g/l). All her other blood tests were normal except creatinine, but this has been slightly high for at least 8 years it seems from her records.
Since then, all her blood tests have been normal at her 3 monthly checks and her M spike has been from the original 1.4 g/dl, then 1.2, then 1.6 and last one again 1.6 in December. She had a FLC test done in December which was abnormal at 8.2.
My wife has now told me that she has been having a pain in one spot on the left side on her lowest rib which does not hurt until she touches it, but which is very tender when she touches it. The pain also bothers her at night when she is lying down, but not necessarily lying on it or moving. In fact, movement does not seem to make it hurt -- only touching it.
She had not told me of the pain before and she did not tell the consultant in December as she said she was hoping it was nothing. I think she was scared to admit to it as it worried her.
Now I am worried and I have been trying to find out if you can get a lytic lesion if all the other tests she is having are staying stable and her BMB is only 4%, or is it possible to get a lytic lesion whatever all the other results are saying?.
I have also been trying to find out without success what the pain is like from a lytic lesion? .To see if it is the sort of pain she has, but the only description I can find is a "dull aching pain," which, as I have said, is not the pain she has, as hers is a sharp pain when touched.
Obviously we will ask the consultant about the pain when we see him in April. but If any one can answer either of these questions it would be very much appreciated.
Sorry for the long winded post.
Many Thanks Dell.
Forums
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Re: Rib pain - sign of lytic lesion?
Hi Dell,
First off, most of what I know about lytic lesions is from what I've read on this forum, not from personal experience. And I'm not a doctor. So, take what I say with a grain of salt.
My understanding is that one can develop lytic lesions even if one's blood markers are relatively stable. This is one of the reasons many doctors recommend routine imaging for monitoring multiple myeloma patients.
As I understand it, some lytic lesions can either be non-painful (and you may never know you have one until you get imaged), or they can be painful to the touch, or the pain can be ever-present, or the pain can occur only when there is movement that affects the area in question. I think I would be playing it safe and I would be be asking to get evaluated to see if this is truly a lytic lesion or perhaps just a passing muscular ache.
Do you really have to wait till April to talk to a local professional about this?
First off, most of what I know about lytic lesions is from what I've read on this forum, not from personal experience. And I'm not a doctor. So, take what I say with a grain of salt.
My understanding is that one can develop lytic lesions even if one's blood markers are relatively stable. This is one of the reasons many doctors recommend routine imaging for monitoring multiple myeloma patients.
As I understand it, some lytic lesions can either be non-painful (and you may never know you have one until you get imaged), or they can be painful to the touch, or the pain can be ever-present, or the pain can occur only when there is movement that affects the area in question. I think I would be playing it safe and I would be be asking to get evaluated to see if this is truly a lytic lesion or perhaps just a passing muscular ache.
Do you really have to wait till April to talk to a local professional about this?
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Rib pain - sign of lytic lesion?
Hi Dell, Since your wife does have other signs of MGUS, or even myeloma, it's probably too much of a coincidence that the rib pain is occurring now. I agree with Multibilly that she should get checked out for this. If you cannot get in to see your oncologist, could you let your GP check this out? I had lots of rib pain before my diagnosis, but did not recognize it as being cancer.
Hope you will get back to us and let us know how everything is going, too. Best wishes to you and your wife.
Hope you will get back to us and let us know how everything is going, too. Best wishes to you and your wife.
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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: Rib pain - sign of lytic lesion?
Hello Dell,
I started my induction chemo on December 17, 2014. My multiple myeloma was completely asymptomatic and was discovered through a routine urine test. My blood tests were all normal since all my IgG was leaking through the kidneys.
I experienced almost identical symptoms, a very localized pain under my left, second or third from the bottom rib in my rib cage. Initially the pain could be felt only if I touched this spot.
I had my skeletal x-rays that had shown fairly small lesions on the skull and on the other long and bigger bones. None were serious enough to hurt or in any danger of any fracture, and I have been cleared to play active sports like tennis or golf. I have been playing golf almost every week since my treatment began. I am not sure if I have pulled a muscle or if this is a lytic lesion, like you suspect in your wife's case.
When I first my asked my oncologist if this area should be x-rayed, he told me that the x-ray would not show anything, but that I should let him know if the pain persists. I just informed him this morning that the pain has not gone away and now I can feel a slight acute pain in that area every time I get up from a chair or when I have to burp. I have been taking ranitidine (Zantac) (Protonix [pantoprazole] has too many side effects) for my acidosis and other gastric problems, but this pain certainly feels like there is a problem in this one-inch (2.5 cm) square area.
I will post any new information, advice, or treatment I get from my oncologist or my PCP.
K_Shash
I started my induction chemo on December 17, 2014. My multiple myeloma was completely asymptomatic and was discovered through a routine urine test. My blood tests were all normal since all my IgG was leaking through the kidneys.
I experienced almost identical symptoms, a very localized pain under my left, second or third from the bottom rib in my rib cage. Initially the pain could be felt only if I touched this spot.
I had my skeletal x-rays that had shown fairly small lesions on the skull and on the other long and bigger bones. None were serious enough to hurt or in any danger of any fracture, and I have been cleared to play active sports like tennis or golf. I have been playing golf almost every week since my treatment began. I am not sure if I have pulled a muscle or if this is a lytic lesion, like you suspect in your wife's case.
When I first my asked my oncologist if this area should be x-rayed, he told me that the x-ray would not show anything, but that I should let him know if the pain persists. I just informed him this morning that the pain has not gone away and now I can feel a slight acute pain in that area every time I get up from a chair or when I have to burp. I have been taking ranitidine (Zantac) (Protonix [pantoprazole] has too many side effects) for my acidosis and other gastric problems, but this pain certainly feels like there is a problem in this one-inch (2.5 cm) square area.
I will post any new information, advice, or treatment I get from my oncologist or my PCP.
K_Shash
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K_Shash - Name: K_Shash
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 67
Re: Rib pain - sign of lytic lesion?
I'm also from the UK and have MGUS. I think it's worth mentioning this to the consultant, but, at the same time, this might not be anything to worry about. With MGUS, it is very easy to get fixated on every little ache and pain and to worry about it. It could be related to something else. Hopefully that is the case, and your consultant is able to reassure you!
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Anonymous
Re: Rib pain - sign of lytic lesion?
Hello all,
Thank you all for your replies. It is nice to know people are so willing to take time to reply to try and help and send their good wishes. Especially you, Multibilly, who I have noticed by reading these forums over the last year, that you very selflessly spend a lot of time answering people, drawing on all the immense knowledge you have found on this subject.
After reading your reply, Multibilly, I followed your advice and got my wife to phone her GP this morning and get an appointment to see him this morning, which she did. He has sent a letter to her consultant to explain the symptoms and ask for guidance on whether to do any tests or whether the consultant wants to see her. So we should have an answer in the next few days on what to do.
I must admit that, when my wife told me of the pain, it really worried me and I had that terrible worried feeling in my stomach although I did not let on to her that it worried me excessively, as I knew this would worry her. But, reading all your replies, I realise that I might well be looking on the black side and should do as you all say and get it checked out and keep hoping for the best. So thank you all again for your replies, and I will keep my fingers crossed for a good outcome.
K Shash, I hope your pain turns out to be nothing to worry about.
Dell
Thank you all for your replies. It is nice to know people are so willing to take time to reply to try and help and send their good wishes. Especially you, Multibilly, who I have noticed by reading these forums over the last year, that you very selflessly spend a lot of time answering people, drawing on all the immense knowledge you have found on this subject.
After reading your reply, Multibilly, I followed your advice and got my wife to phone her GP this morning and get an appointment to see him this morning, which she did. He has sent a letter to her consultant to explain the symptoms and ask for guidance on whether to do any tests or whether the consultant wants to see her. So we should have an answer in the next few days on what to do.
I must admit that, when my wife told me of the pain, it really worried me and I had that terrible worried feeling in my stomach although I did not let on to her that it worried me excessively, as I knew this would worry her. But, reading all your replies, I realise that I might well be looking on the black side and should do as you all say and get it checked out and keep hoping for the best. So thank you all again for your replies, and I will keep my fingers crossed for a good outcome.
K Shash, I hope your pain turns out to be nothing to worry about.
Dell
Re: Rib pain - sign of lytic lesion?
Hi,
I'm in the UK too. I was diagnosed with MGUS after suffering from rib pain for months. Unfortunately, I was also diagnosed with MS at the same time, so I put my rib pain down to that. I had a skeletal survey which showed a lytic lesion on the skull, but the ribs must have been fine, I assume.
Anyway, I have been suffering with shoulder / arm pain for months and eventually my consultant told me to get it x-rayed. I haven't heard anything so I assume it's ok.
My point is that in the UK it seems we have to lead our care / testing, so I think you've done the right thing seeing your GP. So hopefully the consultant will request an x-ray and it will put your mind at rest. Good luck
P.S I forgot to say that my bloods are stable but I still have a lytic lesion, which is not a worry to the docs.
I'm in the UK too. I was diagnosed with MGUS after suffering from rib pain for months. Unfortunately, I was also diagnosed with MS at the same time, so I put my rib pain down to that. I had a skeletal survey which showed a lytic lesion on the skull, but the ribs must have been fine, I assume.
Anyway, I have been suffering with shoulder / arm pain for months and eventually my consultant told me to get it x-rayed. I haven't heard anything so I assume it's ok.
My point is that in the UK it seems we have to lead our care / testing, so I think you've done the right thing seeing your GP. So hopefully the consultant will request an x-ray and it will put your mind at rest. Good luck
P.S I forgot to say that my bloods are stable but I still have a lytic lesion, which is not a worry to the docs.
Re: Rib pain - sign of lytic lesion?
Hi angieevangelou,
Apologies for the tardy reply to your post, but we have been away and had no access to a computer. Many thanks for your reply.
We have not had a reply from GP yet about the letter he sent to the hospital, so we will chase this up on Monday.
I think you are correct in saying that here in England you do need to keep chasing things to get anything done quickly. It is just unfortunate we have been away and have not been able to chase this yet.
Thanks for your good wishes.
Dell.
Apologies for the tardy reply to your post, but we have been away and had no access to a computer. Many thanks for your reply.
We have not had a reply from GP yet about the letter he sent to the hospital, so we will chase this up on Monday.
I think you are correct in saying that here in England you do need to keep chasing things to get anything done quickly. It is just unfortunate we have been away and have not been able to chase this yet.
Thanks for your good wishes.
Dell.
Re: Rib pain - sign of lytic lesion?
Hi All,
I thought I would post this update to let you know what happened with the rib pain my wife had, in case it helps anyone else.
My wife had the X-rays done up the hospital and we have now had the results back. They came back clear of any lesions. So we are very happy. My wife still has the rib pain, but it must be something else, muscular maybe?
So thank you all again for your advice and concern.
Dell.
I thought I would post this update to let you know what happened with the rib pain my wife had, in case it helps anyone else.
My wife had the X-rays done up the hospital and we have now had the results back. They came back clear of any lesions. So we are very happy. My wife still has the rib pain, but it must be something else, muscular maybe?
So thank you all again for your advice and concern.
Dell.
Re: Rib pain - sign of lytic lesion?
That is very good news, Dell, quite reassuring. I'm so glad you posted the follow-up as well. What you share helps us all to understand MGUS a little better.
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Toni - Name: Toni
- Who do you know with myeloma?: self - MGUS
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 51
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