POEMS Syndrome

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POEMS Syndrome

by Tookie on Fri Nov 02, 2007 12:00 AM

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Has anyone heard of POEMS Syndrome - a rare blood disorder often mistakenly diagnosed as smoldering MM?  (it is not cancer, however, as I understand though with similar, but not as many, markers)  Ours we think has now been diagnosed as POEMS, and I'd like stories from people with this diagnosis

RE: POEMS Syndrome

by roadrunner on Fri Nov 02, 2007 12:00 AM

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Hi.  The IMF in California knows all about POEMS.  When I called to request a packet of information from them several months ago, they asked about my symptoms, etc., and said that I could have POEMS.  They said that most doctors have never heard of POEMS and that it is only treated at the Mayo Clinic.  They also said that it is treated the same as Myeloma.  You can contact them at myeloma.org.  It must be very RARE since you are the first person to post here.   Do you have high levels of plasma cells in your bone marrow and high serum freelight test results?

 Good luck with the diagnosis.

 -Sue

 

 

 

 

 

RE: POEMS Syndrome

by Rose__Neil on Sat Nov 03, 2007 12:00 AM

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Hi Tookie,
My husband has POEMS Syndrome and was mis-diagnosed for a year. Since it's rare, the doctor thought it was CIDP due to the same symptoms. He had plasmapheresis, IVIG which didn't help at all until he started to take prednisone. We found a doctor in San Francisco who diagnosed him with POEMS. He had a lesion in his neck that confirmed plasmacytoma which is one of the symtoms of POEMS. He also had onset diabetes, M-Proteins, enlarged spleen and skin changes. He basically has all the symptoms. The lesion in his neck was radiated and he's had 7 chemo treatments and unfortunately he relapse 2 months agon. We saw a doctor in Stanford who treats people with this disease and he recommended a chemo pill called Revlimid and he will start this Tuesday. Once he's strong enough he also recommended to do a stem cell transplant. That's where were at now. It's been over 2.5 years now and we're hoping and praying this Revlimid will work. Let me know if you have questions. Take care and God Bless....

RE: POEMS Syndrome

by Tookie on Sun Nov 04, 2007 12:00 AM

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Thanks for the posts re POEMS syndrome. My hubby has the spike in M-protein I dont know enuf about the numbers to really discuss them. He has no other symptoms. His main and really bad symptomm is extremely weak legs and just feeling so awful. Is that a symptom of anyone else? Is neuropathy (weakness) the main symptom for anyone else? GUess we're fortunate our hema/oncologist in VA. found it. He was already on prednisone for something else-haven't decided on other drugs yet

RE: POEMS Syndrome

by roadrunner on Tue Nov 06, 2007 12:00 AM

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Yes, I have had the neuropathy in my hands, legs, and feet for the past 4 years, plus weakness, and numerous symptoms. I am thinking that I have POEMS as opposed to Myeloma. Getting diagnosed with POEMS is obviously very difficult. It is good that somebody started this POEMS topic. Thanks.

RE: POEMS Syndrome

by vermonter on Wed Nov 07, 2007 12:00 AM

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We are headed to the mayo in Mn on Sunday.We have a 15 yr old son with a possible diagnoses of Poems syndrome. Does any one know of any one else this young with this syndrome.He has been sick for over a year with no diagnoses.He now has hyperpigmentation,thyroid elevated ,high andostrone levels and extreme fatigue.He used to play hockey and soccer now he is pretty much bed ridden.He has been to childrens in boston,brigham and womens,dartmouth .we finally found Dr trentham at beth Isreal in boston who seems to have put it together.we are hoping for a firm diagnoses next week and hopefully treatment.does anyone with poems also have vertigo?

RE: POEMS Syndrome

by Rose__Neil on Fri Nov 09, 2007 12:00 AM

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First of all, I am so sorry to hear about your son. It does sound like he has POEMS and going to the Mayo Clinic is the best thing to do because that's the place where they treat people with this diagnose. I wanted to take my husband there but it's too far for him to travel so I was grateful that there's a doctor here in Stanford CA who are treating patients with this disease. My husband started Revlimid (25mg) 3 days ago and had bad side effects. We see his oncologist today. We think the dose is too high for him so we're going to suggest to take a lower dose and see what she says. This is a new drug and from what I've read, it does help. I hope your son will get better soon. God Bless and Take care!

RE: POEMS Syndrome

by Tookie on Sat Nov 24, 2007 12:00 AM

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Well, it turns out my hubby does not have MM, SMM or Poems, but something akin to MGUS as he "passed" all the tests for all of the above diseases, But instead of it being "undetermined significance-US) his monoclonal cells attacked the nerves in his legs.  Extreme leg weaknes and general overall weakness are his only symptoms.  He has taken one round of cyctoxan for 5 days and off 3 weeks, and will repeat several times.  He is no better.  WIll someone tell me how to interpret the M-spike and what a normal # is for that.  I can't find a website to help me to interpret the IGA, calcium serum or whatever, and everyone I read about seems to know what the numbers mean. 

RE: POEMS Syndrome

by Tookie on Sat Dec 15, 2007 12:00 AM

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On 11/9/2007 Rose & Neil wrote:

First of all, I am so sorry to hear about your son. It does sound like he has POEMS and going to the Mayo Clinic is the best thing to do because that's the place where they treat people with this diagnose. I wanted to take my husband there but it's too far for him to travel so I was grateful that there's a doctor here in Stanford CA who are treating patients with this disease. My husband started Revlimid (25mg) 3 days ago and had bad side effects. We see his oncologist today. We think the dose is too high for him so we're going to suggest to take a lower dose and see what she says. This is a new drug and from what I've read, it does help. I hope your son will get better soon. God Bless and Take care!

I was interested in hearing how your husband is now.  Is he still taking the Revlimid?  What are his symptoms with POEMS?  My husband also has it we think, and is taking cytoxan (chemo) 5 days and off 3 weeks.  He is feeling very bad all the time. 

RE: POEMS Syndrome

by VALEON on Thu Jan 24, 2008 12:00 AM

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I have had POEMS for two years
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