CancerCompass message board discussion started by royalcrimson4u on 4/8/2008 http://www.cancercompass.com/message-board/message/all,22818,0.htm Mon, 08 Sep 2008 00:00:00 GMT Mon, 08 Sep 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I have had symptoms of POEMS for several years and no doctor has every been able to figure out what was wrong with me.  Finally after a month and a half my new neurologist diagnosed me with POEMS.  I do have all 5 of the categories.  I was concerned about this being passed on to my children.  She said this is not hereditary.  I am going to see a neurosurgeon on Thursday to see about a lesion that is in going into my spinal cord.  Has stem cell transplants been successful for anyone?  Is mayo the only place doing research on POEMS?  Is anyone have a research studies on it? royalcrimson4u Tue, 08 Apr 2008 00:00:00 GMT Are you still seeking information regarding the treatment of POEM's?My husband had a successful stem cell transplant in August 2006 and I would be happy to share "our" experience with you.   Just let me know.  caregiver08 Thu, 22 May 2008 00:00:00 GMT Yes!  I tried recently to get a tumor out of my spine and it got cancelled before I went into the OR.  My sugar readings were to high.  I have not been able to control my diabetes for a couple of years.  I am wondering if I can get stem cell treatments with my diabetes unable to be under control.  In the past few month I have lost about 80 pounds and it has made no difference with my poems or diabetes.  I would like any help or suggestions. Thank you. royalcrimson4u Wed, 04 Jun 2008 00:00:00 GMT I'm sorry to hear of your complications.  First question, where are you being treated?  Is there anyway you can get to the Mayo Clinic in Rochester, MN?  Dr, Dispenzieri is an expert hemotologist in POEM's research and treatment.  caregiver08 Tue, 10 Jun 2008 00:00:00 GMT  On 4/8/2008 royalcrimson4u wrote:I have had symptoms of POEMS for several years and no doctor has every been able to figure out what was wrong with me.  Finally after a month and a half my new neurologist diagnosed me with POEMS.  I do have all 5 of the categories.  I was concerned about this being passed on to my children.  She said this is not hereditary.  I am going to see a neurosurgeon on Thursday to see about a lesion that is in going into my spinal cord.  Has stem cell transplants been successful for anyone?  Is mayo the only place doing research on POEMS?  Is anyone have a research studies on it?I have a friend who just returned from having a Stem Cell Replacement,at the Mayo Clinic in Rochester. If your looking for more information on POEMS there is also another site that has 45 some odd patients who post to it on POEMS,many date back many years of living it. The "expert"on the subject seems to be Dr.Dispenzieri. Poems takes a "whole team" of doctors working together to treat. The site is:http://www.acor.org  it may take a while to load,I find late at night,or early morning the easiest. You should find most anything you want to know posted there.If you have a question about POEMS,they will be more than happy to help.  Their support and insite is remarkable.  sunkuz Sat, 26 Jul 2008 00:00:00 GMT