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Re: POEMS Syndrome
Hi,
I've been diagnosed with osteosclerotic myeloma - seemingly another name for POEMS when polyneuropathy is not present. I don't have enlarged organs or obvious endocrine problems either. I am hoping that I won't develop the neuropathy as time goes on. I do have numerous small sclerotic lesions, but no lytic lesions, which at first baffled the doctors, because this is not typical of myeloma. Since there is damage to the bone, it is prompting me to have an autologous stem cell transplant.
My M-spike is low (0.39 g/dL = 3.9 g/L) after 4 rounds of CyBorD (Velcade, cyclophosphamide, dexamethasone), but it was never very high. I think originally it was at 0.49 g/dL. My bone marrow biopsy originally showed 25% plasma cells, and after 4 rounds it is now down to 1%. So, there has been a response.
Recently, I sometimes feel a very slight itch on my foot that seems like it might be the start of athlete's foot. So, I have been using that medication as a preventative; it seems to go away, but then occasionally returns, so now I will use the cream religiously to notice if it stays away. I am hoping this isn't the beginning of some form of neuropathy.
Anyway, my transplant is scheduled with the high-dose melphalan for March 16, re-infusion of stem cells to follow on March 18. POEMS syndrome seems to have a better prognosis with overall survival than typical myeloma, I'm hoping that my transplant will prevent further symptoms and contribute to a longer remission and, hopefully, less painful progression.
I've been diagnosed with osteosclerotic myeloma - seemingly another name for POEMS when polyneuropathy is not present. I don't have enlarged organs or obvious endocrine problems either. I am hoping that I won't develop the neuropathy as time goes on. I do have numerous small sclerotic lesions, but no lytic lesions, which at first baffled the doctors, because this is not typical of myeloma. Since there is damage to the bone, it is prompting me to have an autologous stem cell transplant.
My M-spike is low (0.39 g/dL = 3.9 g/L) after 4 rounds of CyBorD (Velcade, cyclophosphamide, dexamethasone), but it was never very high. I think originally it was at 0.49 g/dL. My bone marrow biopsy originally showed 25% plasma cells, and after 4 rounds it is now down to 1%. So, there has been a response.
Recently, I sometimes feel a very slight itch on my foot that seems like it might be the start of athlete's foot. So, I have been using that medication as a preventative; it seems to go away, but then occasionally returns, so now I will use the cream religiously to notice if it stays away. I am hoping this isn't the beginning of some form of neuropathy.
Anyway, my transplant is scheduled with the high-dose melphalan for March 16, re-infusion of stem cells to follow on March 18. POEMS syndrome seems to have a better prognosis with overall survival than typical myeloma, I'm hoping that my transplant will prevent further symptoms and contribute to a longer remission and, hopefully, less painful progression.
Re: POEMS Syndrome
I too have been reading up on POEMS and wonder if I have it.
I had unbearable itchy / burning shoulders for years (I was told it was in my head!). I found out my neck facet joints were damaged and in my case it caused this itch instead of pain. I have since had successful treatment for it. So for years I constantly put ice on my shoulders to stop the itching. I then ended up with a reaction to cold called cold urticaria (because of the ice), my blood was tested because there is a connection with myeloma and I have 3 g/l (0.3 g/dL) IgG lambda. I was diagnosed with MGUS.
All this was in the past 18 months. My ESR is high, I tested positive for autoimmune, and I am low on bicarbonate. Kidneys 71
I now have pain like toothache in my legs and its now 70% of the time, my legs give way and wobble occasionally, I get restless legs too and they swell a bit. I have now started getting some pain in my hands. I get pain in my eyes too but only occasionally.
I am having an MRI on my brain next week to check for MS, I know its not that.
I am in the UK so things are a bit different here.
I would like to know what specialist to see for these symptoms, I know something is wrong, but I am just given pain killers from the doctor, and she doesn't know who to send me to!.
Any one with ideas?
I wish you all well
I had unbearable itchy / burning shoulders for years (I was told it was in my head!). I found out my neck facet joints were damaged and in my case it caused this itch instead of pain. I have since had successful treatment for it. So for years I constantly put ice on my shoulders to stop the itching. I then ended up with a reaction to cold called cold urticaria (because of the ice), my blood was tested because there is a connection with myeloma and I have 3 g/l (0.3 g/dL) IgG lambda. I was diagnosed with MGUS.
All this was in the past 18 months. My ESR is high, I tested positive for autoimmune, and I am low on bicarbonate. Kidneys 71
I now have pain like toothache in my legs and its now 70% of the time, my legs give way and wobble occasionally, I get restless legs too and they swell a bit. I have now started getting some pain in my hands. I get pain in my eyes too but only occasionally.
I am having an MRI on my brain next week to check for MS, I know its not that.
I am in the UK so things are a bit different here.
I would like to know what specialist to see for these symptoms, I know something is wrong, but I am just given pain killers from the doctor, and she doesn't know who to send me to!.
Any one with ideas?
I wish you all well
-
vix66 - Name: Vicki
- Who do you know with myeloma?: I have MGUS
- When were you/they diagnosed?: October 2015
- Age at diagnosis: 48
Re: POEMS Syndrome
Hello Vixx:
My wife was asymptomatic MGUS and smoldering for almost 10 years. In our case, once the level of M-spike got to about 3.0 g/dL (30 g/L), then it started to move up quickly (it took almost 10 years to get from about 1.8 to 3.1). You may be different, but from my reading, not only of our case but of other cases, when you get to about at 3.0 g/dL M-spike, you need to start to be very vigilant. The three level is more a rule of thumb, and not a hard and fast number. Some people go up to 5, and are still smoldering (I think that is on the rare side, however).
I know we have several forum participants form the UK. The country overall is a major center of research recognized world wide, and particularly has many good doctor originating in Scotland. At this stage, you need to hook up with one of the better multiple myeloma specialists. You could potentially have a local onc who sees you several times a year, but you should have a myeloma specialist on the team who you see twice a year (or so) with overall input on treatment philosophy and approach.
Good luck to you.
My wife was asymptomatic MGUS and smoldering for almost 10 years. In our case, once the level of M-spike got to about 3.0 g/dL (30 g/L), then it started to move up quickly (it took almost 10 years to get from about 1.8 to 3.1). You may be different, but from my reading, not only of our case but of other cases, when you get to about at 3.0 g/dL M-spike, you need to start to be very vigilant. The three level is more a rule of thumb, and not a hard and fast number. Some people go up to 5, and are still smoldering (I think that is on the rare side, however).
I know we have several forum participants form the UK. The country overall is a major center of research recognized world wide, and particularly has many good doctor originating in Scotland. At this stage, you need to hook up with one of the better multiple myeloma specialists. You could potentially have a local onc who sees you several times a year, but you should have a myeloma specialist on the team who you see twice a year (or so) with overall input on treatment philosophy and approach.
Good luck to you.
-
JPC - Name: JPC
Re: POEMS Syndrome
Thank you, JPC, for your answer.
I was told by the haematologist that he didn't want to see me until it reached 10.
I stopped the pain patches a few weeks ago and I actually feel better. The pain in my legs feels better, but I have good and bad days.
What symptoms did your wife have in the beginning? I have a few but not all of them. The two main ones, leg pain and strange sensations and IgG and my hands, are occasionally doing the same now. I get sharp pain in my eyes, my legs swell a bit and my skin reacts with anything, but I am not sure I have enough of the symptoms for POEMS. I have asked for an MRI on my legs because of the risk of bone lesions, but I was told no, I didn't need one and was given more pain killers.
In the UK, our NHS is a great thing, but they are overstretched and underfunded. I won't get private healthcare now as I have obvious signs that something is wrong and insurance companies won't touch me now. Hindsight is a great thing.
I have an MRI on my head next week, and I am sure they won't find anything (she is looking for MS), so it will be "next please" and move on to next specialist that my doctor can think to send me.
When I next see her, I will ask, but the nurse at my doctor's is a close friend and she is going to talk to the doctor about POEMS for me so maybe she will listen.
Thanks again.
I was told by the haematologist that he didn't want to see me until it reached 10.
I stopped the pain patches a few weeks ago and I actually feel better. The pain in my legs feels better, but I have good and bad days.
What symptoms did your wife have in the beginning? I have a few but not all of them. The two main ones, leg pain and strange sensations and IgG and my hands, are occasionally doing the same now. I get sharp pain in my eyes, my legs swell a bit and my skin reacts with anything, but I am not sure I have enough of the symptoms for POEMS. I have asked for an MRI on my legs because of the risk of bone lesions, but I was told no, I didn't need one and was given more pain killers.
In the UK, our NHS is a great thing, but they are overstretched and underfunded. I won't get private healthcare now as I have obvious signs that something is wrong and insurance companies won't touch me now. Hindsight is a great thing.
I have an MRI on my head next week, and I am sure they won't find anything (she is looking for MS), so it will be "next please" and move on to next specialist that my doctor can think to send me.
When I next see her, I will ask, but the nurse at my doctor's is a close friend and she is going to talk to the doctor about POEMS for me so maybe she will listen.
Thanks again.
-
vix66 - Name: Vicki
- Who do you know with myeloma?: I have MGUS
- When were you/they diagnosed?: October 2015
- Age at diagnosis: 48
Re: POEMS Syndrome
Well, I went through my autologous stem cell transplant in March after my diagnosis of osteosclerotic myeloma. I didn't have a very rough time with that, all in all. You can read my stem cell journal in a different thread. But, now I am at day 84 post-transplant, feeling great – biking 6-10 miles per day, walking, seeing my family, but still wearing my mask.
Anyway, each morning – even prior to my transplant – I noticed a mild tingling and numbness in my fingers when I was typing. I would stop for a bit, hold my warm coffee mug, wait for the numbness to go away, and then return to what I was doing. I just attributed this to poor sleeping posture and the typing (maybe a mild form of carpal tunnel or something like that).
Last week, I noticed this numbness in the middle of the night. Two times in the past week, I woke with more of a numbness, burning, pins and needles sensation in my hands that went away after a few minutes. I am noticing that this slight numbness is becoming more frequent, but still subtle.
I have the M-spike, I have the sclerotic lesions, and - now - this seemingly beginning of neuropathy. I see my doctor this week, but I already know that this diagnosis will be changed to POEMS.
I am so scared that I will lose the use of my hands and feet as time goes on. I am hoping that the transplant is still working its affect and that this neuropathy will begin to fade with time and not progress!
Any other POEMS people out there? Anyone have all of the criteria and go through the transplant and see resolution of your neuropathy?
Anyway, each morning – even prior to my transplant – I noticed a mild tingling and numbness in my fingers when I was typing. I would stop for a bit, hold my warm coffee mug, wait for the numbness to go away, and then return to what I was doing. I just attributed this to poor sleeping posture and the typing (maybe a mild form of carpal tunnel or something like that).
Last week, I noticed this numbness in the middle of the night. Two times in the past week, I woke with more of a numbness, burning, pins and needles sensation in my hands that went away after a few minutes. I am noticing that this slight numbness is becoming more frequent, but still subtle.
I have the M-spike, I have the sclerotic lesions, and - now - this seemingly beginning of neuropathy. I see my doctor this week, but I already know that this diagnosis will be changed to POEMS.
I am so scared that I will lose the use of my hands and feet as time goes on. I am hoping that the transplant is still working its affect and that this neuropathy will begin to fade with time and not progress!
Any other POEMS people out there? Anyone have all of the criteria and go through the transplant and see resolution of your neuropathy?
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