Meaning of POEMS Syndrome

Praise the Lord is right!!  I have asked several close friends to pray for you too.  They will be so happy to hear that your transplant has been approved.  I just couldn't understand how they could do that.  Well, now you can get started.  I am sorry to hear that neuropahty has progressed the way it has.  Just believe that the transplant will completely change that.  You will play ring around the rosie with you little girl some day soon.  We are in the process of setting up a page on caringbridge.  I will let you know what the user name and password is so you can see how Ralph is doing with his transplant.  We are so relieved, Ralph has been so upset since i told him what was going on with you.  We will continue to pray for you as you start your process.  Please keep in touch.

Ralph & Rebecca

Please thank your friends for me for their prayers.  I got my new dates today.  I start the Neupogen next Friday, with my collection the next week.  I'll enter the hospital on Aug. 4 for the 'main event'.  It's amazing how we'll be going through this at about the same time.  We'll be able to compare notes as we notice the progress afterwards.  I'm looking forward to the day that I can wiggle my toes again.  That's when I'll feel like I'm truly on the road to recovery.

What level of mobility/neuropathy does your husband currently have? 

Sorry it took so long to reply.  I need to check the posting more often.  So, they will start the Neupogen on the 24th and you will begin the "main event" on the 4th.   We will be really close.  If possible, please try to let us know how you are doing or maybe your caregiver can post.  I have a friend (one that has been praying for you) that set up a page on caringbridge.  The link is http://www.caringbridge.org/visit/ralphmarino.  There's  not much there now, but we plan to post pictures and try to post his progress every day. We will not be going to MD until August 9th, so we won't have much to post until then.  Where are you having your transplant?  Ralph's sisters are going to stay with him some while he recieves his Neupogen and stem cells are collected.  Once the chemo and transplnat starts, i will be there. I don't have 2 months of leave and i just got a promotion.   They are completely behind me and tell me take all the time i need, but we need my pay check and i cannot go on leave without pay.  Anyway, he has good family and all will work out fine.  I have five weeks of leave and that should cover most of it. 

So, in the meantime, take good care of yourself and eat plently of protien.  That will assits in stem cell produciton. 

Please let us know how you are doing and visit Ralph's web page.

 TTYL  Rebecca

I forgot!  Ralph's neurophathy is not as severe as most POEMS patients.  In fact, he is A typical because his neuropathy is not as severe but, his kidneys are in very bad shape.  POEMS patients may have some reneal insuffiency, but Ralph's is extreme.  So while his is unable to climbe stairs, stoop, or walk any distance, he may need a kidney transplant in the future. 

Anyway, I too hope that you will be able to wiggle your toes very soon:)

On May 01, 2009 12:00 AM leaf10 wrote:

Hi, thank you for responding. I am glad to talk to you.

I have had POEMS for four years. I was diagnosed four years ago with symptoms of nsevere peripheral neuropathy in my feet and hands, fatigue, a lot of numbness and edema in my legs.  I had even had diabetes.

 At first, I had tried chemo therapy, but it didn't work at all. At that time, I was desperate to know what POEMS syndrome is and how to find a cure for poems syndrome.

Forturntely I had a chance to contect with a mam whose wife had poems syndrome. He said that his wife had had two options in hospital. One was stem cell transplant and the other was Velcade(bortezomib). She had decided to take valcade therapy. After she had two cycles of valcade, she felt her symptoms got better.

 I was encouraged by the news. So I consulted with my doctor and he agreeded me to have Velcade therapy.
 
Most doctors think that velcade can't be a good therapy for poems syndrome. Because velcade has side effect of peripheral neuropathy. Poems patients already have that symptoms. So they think velcade make peripheral neuropath worse.

My doctor and I were also worried about that. But we decided to have five cycles of Velcade therapy and I have dramatically recovered from all symptoms. Before I had the therapy, I couldn't run, jump. Walking was not easy for me too. But now I can run, jumb. I can climb a mountain.  For last three years I have never taken any pain meds like neurontin.

Now I think Valcade is as good as stem cell transplant. 

PS.  "I am fine." was a wrong expression. I ment to say "I am cured."

 

 

I have had POEMS for some years, but only diagnosed recently. I felt the swollen lymph node in my neck, but no one was concerned until recently. They knew about the PN, and edema and hypothyroidism, but not the Castleman's and stuff until I lost a lot of weight after getting the mercury out of my teeth, (which I believe to have caused at least the polyneuropathy). Then my torso was huge while my arms, legs and neck were tiny. Catscan revealed the enlarged lymph nodes all over.

I read your posting here about Velcade, and wonder how I find a doctor who has used Velcade or any other treatment to successfully treat POEMS. Can you help me? I'm not having any luck getting a good discussion about it going with my hematologist, and all I can find online is your statement about its effectiveness.

Thank you!