re:poems syndrome

I was diagnosed with POEMS syndrome in Feb. 2005, in Arizona, U.S. I had peripheral blood stem cell transplant in Dec. 2005. Since then I have greatly improved. As to your husband drinking alcohol: my Dr. says an occasional drink is okay, but I find that my neoropathy increases with alcohol, and really seems to be sensitive to lots of sugar, either in sweets OR alcohol.I still take the Gabapentin, as well, though decreased lots since PBSCT. I go to the Gym now, and can walk for miles, even though I had to wear leg braces to walk at all before, and they said I would be in wheelchair eventually. Now they call it \"CR\", complete remission, and hope to call it cured at the 5 year mark. Good luck to you both,

Where did you receive your stem cell transplant? My daughter, who has not been able to walk or stand since July 2007, was diagnosed with POEMS in November, and Mayo is suggesting the same. She hasn't responded to six weeks of radiation (ended Jan.). I would so appreciate any information on your experiences. Thank you so much.

I recieved my PBSCT(transplant) at University Medical Center in Tucson,AZ. I was treated through the Arizona Cancer Center, and cannot say enough about how awesome their program is. The Bone and Marrow Transplant program there is rated very highly, everywhere I could find information. Dr. Michael Carroll was my Oncologist, though he has since moved to Sutter Medical Center in Sacramento, CA. He was agressive with my treatment, which I am quite grateful for. POEMS is tough, because most Dr.s' lump the patient in with the multiple myeloma patients, and it is really quite different. I would be happy to talk with you further, just let me know what I can do to help you both,

Dear PAULOSZ -

Thank you for your response. I am the mother whose daughter has POEMS and I would indeed like to know more about your experience!

Would you mind writing to **** with POEMS on the subject line?

Appreciately,

Wanda

*I'm having problems joining this site. The image on the registration page does not come up for me.

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Dear PAULOSZ,

I'm the mother of the 35 year old daughter who has POEMS. A hematologist at Mayo Clinic (MN) recommended SCT, or at the very least, to harvest her stem cells.

I'm so happy you are healthy. My daughter wants to know (if you don't mind): Did you have cancer cells in your bone marrow? Did you undergo radiation? What were your symptoms? How long did it take to receive the diagnosis?

Thank you also for your earlier response. Please write me on this site

Gratefully,

Wanda

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Hi Wanda...I was diagnosed in 1996 with Poems at the age of 43yrs,it took 18mths to get the diagnosis.I was bedridden for a year,unable to carry my own weight.Since my stemcell I have just got better and better....I am in my 11th post transplant year and hope to have many more :lol: I still use a cane and cannot walk long distances,but can enjoy life.....I hope your daughter improves soon......best wishes to all ...Sandra

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Dear Sandra,

Thank you for your response. We are so happy to hear that you are doing well after 11 years, but mainly that you sound so well!

My daughter asks what the impetus was behind the stem cell transplant. Had you already received radiation, chemo, bone marrow biopsy...? What factors led to the decision to proceed to your transplant?

Are you on medication?

Would you mind writing me at ****? We appreciate your willingness to encourage others. Good health!

Wanda

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Hi all.....My stemcell transplant was done after 6 chemo sessions.....I had 4 parts of Poems I think...Skin changes,polyneuropathy,enlarged spleen and endocrine changes........I had 3 bone marrow biopsy's all together...My plasma cells were big apparently and not enough of them...

I was told the transplant was the best chance of survival for me (my doctor said I was very lucky to survive at all as I was so dreadfully ill) it feels a lifetime away now.......

Whilst I was in hospital (6 mths)I had most of my chemo,then after the harvest of my stemcells I had the main chemo session, before the stemcells were given back to me.......I was expected to be in hospital for 6wks with the transplant but was out in 3wks..Only problem was an allergy to some tablets which was soon sorted.

Another problem I had during all this was the weight loss,which took some time to recover from,but it has been really stable for the last few years

The only medication I am on now is thyriod medication and Vitamin B.

Hi Sandra

I have gone through your experience. Well done. My husband also have POEMS as mentioned in the previous experience. He is doing fine. He had stem cell transplant in 2005.It will be 4 years in Oct 09. He is perfectly ok except neuropathy and still on Gabapentin and Amitryptiline. You dont have any neuro pathic problems? If so very good.Take care.

Jancy