New POEMS patient

I'm posting in two different places with the hope that I'll hear from someone.  Accept my apologies for the repetitiveness.

Am I happy to find a site with people who know what I'm going through.  I was just diagnosed last week with POEMS.  I started having neuropathy several months ago that has progressively gotten worse.  Now I'm wearing two ankle braces and using a cane.  I have every symptom (enlarged liver, hormonal issues, skin changes, MGUS, edema, enlarged abdomen, more platelets) except for the bony lesions.  My mother-in-law keeps saying that if I don't have the lesions, maybe I don't have POEMS.  My husband thinks that maybe we just caught it early enough before the lesions started.  I don't know.  My hematologist did a lot of research before making the final diagnosis and even talked to Dr. Dispenzieri at the Mayo Clinic.  He has suggested that I get a stem cell transplant.  I'm supposed to get a dose of chemo as well during my stay at the hospital (Univ. of PA).  I have a meeting with the transplant team next week, where I'll find out when everything starts.  I imagine it will be by the end of June or early July.  There's still much I don't know though.  Ralph, or anyone else, I would love to know how your transplant went.

On 6/10/2009 mrsbrandis wrote:

I'm posting in two different places with the hope that I'll hear from someone.  Accept my apologies for the repetitiveness.

Am I happy to find a site with people who know what I'm going through.  I was just diagnosed last week with POEMS.  I started having neuropathy several months ago that has progressively gotten worse.  Now I'm wearing two ankle braces and using a cane.  I have every symptom (enlarged liver, hormonal issues, skin changes, MGUS, edema, enlarged abdomen, more platelets) except for the bony lesions.  My mother-in-law keeps saying that if I don't have the lesions, maybe I don't have POEMS.  My husband thinks that maybe we just caught it early enough before the lesions started.  I don't know.  My hematologist did a lot of research before making the final diagnosis and even talked to Dr. Dispenzieri at the Mayo Clinic.  He has suggested that I get a stem cell transplant.  I'm supposed to get a dose of chemo as well during my stay at the hospital (Univ. of PA).  I have a meeting with the transplant team next week, where I'll find out when everything starts.  I imagine it will be by the end of June or early July.  There's still much I don't know though.  Ralph, or anyone else, I would love to know how your transplant went.

I just read your message on September 3.  Have you had the transplant yet?  I am happy to answer your questions.   My husband had a successful SCT in August 2006 and his health has improved dramatically.

Hello,

I just got out of the hospital on August 19 after receiving my stem cell transplant.  It seems like everything went fine.  Unfortunately, I now am in rehab because it took a little while to get it and now I have to learn to walk again.  My muscles are very atrophied and I can tell that I have a long way to go.  At this point I'd be happy to upgrade to a walker.  I wish that someone could tell me how long it takes for you to get over the peripheral neuropathy.  I know that everyone's case is different.  How long was it before your loved one was able to walk again? 

That is wonderful news to hear your SCT went well!  I'm sure you are relieved and also anxious to see some progress.  You are absolutely correct that everyone's case is different so it is hard to predict your future.  My husband never lost the use of his legs despite having neuropathy.   But he was in a wheelchair for a month or so due to severe weakness during the SCT process. He slowly gained back his strength and his ability to walk on his own.   Over the past three years, his stamina has continued to improve, his neuropathy issues lessened, and just a few months ago he came off all the pain meds he was taking.  He still takes neurontin but finally was able to come off the oxycontin.   That was a BIG DEAL for him!  I wish you the best in the weeks, months, and years to come!   At times, it may feel like you aren't seeing any changes, but hang in there because you'll begin to notice slight differences over the course of time, and then those slight differences begin to build into bigger changes.  Be patient.   

Carole 

ut then you'll realize you are starting to do something you couldn't do before.  So be patient.  What hospital are you in?