Poems Syndrome - Rare Variant Of Multiple Myeloma

Has anyone who has POEMS Syndrome tried Revlimid?  My husband took it only for 3 days and was admitted to the hospital for 4 days due to bad side effects.  He became dehydrated, had shortness of breath, very fatigued, legs/hands felt stiff (feeling is like over-working out) and a lot of numbness.  It's been 11 days now since he was discharged from the hospital and he still has a lot of stiffness in hands/legs, some neuropathy but not bad all the time.  He's going to try taking only 5mg vs. 25mg with 45mg of prednisone and hopefully the side effects doesn't get worst.  We truly had high hopes for this but now we're scared to even take the lower dose.  His oncologist isn't familiar with POEMS but because of the neuropathy she doesn't want him to take it.  She left it up to us to decide because the Standford oncologist that we saw for a second opinion uses it for his patients that have POEMS.  I know everyone's body is different so it's sooooo hard to decide.  Any thoughts anyone?????

It's very interesting to find another POEMS patient on this board as we are such an exclusive little group. We need to stick together and help each other! I was diagnosed last year with symptoms of moderately severe peripheral neuropathy in my feet and hands, paraprotein of 5g/l (last time after treatment down to 2g/l) and widespread sclerotic bone lesions. I had a stem cell transplant in July this year but unfortunately, other than a minimal decrease in my paraprotein from 3g/l to 2g/l, I have yet to notice any improvement in my neuropathy at 4 and a half months out. Some days it seems worse than ever, although fortunately I can still walk normally but uncomfortably. I have been wondering about Revlimid as a follow-up treatment so I am very interested in your experience. How is it going now? Dr Angela Dispenzieri of the Mayo Clinic, Rochester, Minnesota is considered the world expert in POEMS syndrome. She published a paper recently on a patient she treated with Revlimid, and there was substantial improvement. It sounds like that patient was in a very bad way and the idea was to get him well enough to have a stem cell transplant. What I want to know is, what is the next step for me if the stem cell transplant didn't work? I was thinking maybe Revlimid, but after hearing of your reaction I'm a little discouraged. Dr Dispenzieri is happy to give advice to patients by email and I can send you her email details by personal message if you would like so you can contact her. I would be interested in the contact details of your Stanford doctor so I could find out more about the cases he/she has treated with Revlimid. Hope you're doing better and I look forward to hearing from you soon.

I'm sorry to hear you haven't truly benefited from the stem cell transplant.  What did the doctors think?  Is it possible that it will eventually get better?  That's discouraging because Dr. Coutre (Stanford University Medical Center in CA http://cancer.stanfordhospital.com/FindAPhysician/Search/doc ) suggested for my husband to do a stem cell transplant once he gets stronger.  I know about another POEMS patient from Florida who did the transplant and he's in remission now.  Unfortunately the outcome of these treatments aren't the same for everyone which I don't understand at all.  Anyway, I'm glad to hear you're still able to walk without any assistance.  As for the 5mg of revlimid that my husband started yesterday, today he will discontinue it.  He didn't feel good at all when he took it and it lasted all through the night.  He didn't sleep, had upset stomach, a lot of tremors, chest pain, hard to breathe and he can still smell and taste it.  Although it's a lower dose, it's still too strong for him.  I don't know if it's the combination of the prednisone or his body just can't tolerate it.  It doesn't mean yours can't.  I would suggest it to your doctor and see what he/she thinks.  I've read from clinical trials that it does work but again not for everyone.  I've emailed Dr. Disperienza in the past because we were disperate to hear from a doctor who actually treats people with POEMS but it was hard to do email with her.  She wanted us to go see her but my husband is not in the condition to fly and it's too far.  If she's in Arizona then we would go there.  Our advocate nurse found Dr. Coutre from Stanford hospital so we had a consultation appt with him.  Unfortunately we can't go back to him because our insurance doesn't cover it but my husband's oncologist is keeping him informed.  I think the next treatment is Avastin.  We'll know next week.  I hope you'll be able to find another treatment soon.  Stay positive and don't give up.  God Bless!  Rose

 

 

 

On 11/29/2007 ladyfifi wrote:

It's very interesting to find another POEMS patient on this board as we are such an exclusive little group. We need to stick together and help each other! I was diagnosed last year with symptoms of moderately severe peripheral neuropathy in my feet and hands, paraprotein of 5g/l (last time after treatment down to 2g/l) and widespread sclerotic bone lesions. I had a stem cell transplant in July this year but unfortunately, other than a minimal decrease in my paraprotein from 3g/l to 2g/l, I have yet to notice any improvement in my neuropathy at 4 and a half months out. Some days it seems worse than ever, although fortunately I can still walk normally but uncomfortably. I have been wondering about Revlimid as a follow-up treatment so I am very interested in your experience. How is it going now? Dr Angela Dispenzieri of the Mayo Clinic, Rochester, Minnesota is considered the world expert in POEMS syndrome. She published a paper recently on a patient she treated with Revlimid, and there was substantial improvement. It sounds like that patient was in a very bad way and the idea was to get him well enough to have a stem cell transplant. What I want to know is, what is the next step for me if the stem cell transplant didn't work? I was thinking maybe Revlimid, but after hearing of your reaction I'm a little discouraged. Dr Dispenzieri is happy to give advice to patients by email and I can send you her email details by personal message if you would like so you can contact her. I would be interested in the contact details of your Stanford doctor so I could find out more about the cases he/she has treated with Revlimid. Hope you're doing better and I look forward to hearing from you soon.

 

Sorry to hear that Revlimid was not successful for you. Don't be put off by my experience with the stem cell transplant. It is possible that I may still get some improvement. Literature I have read by Dr Angela Dispenzieri states improvement in peripheral neuropathy in 3 to 6 months and I am currently 4 and a half months out. Also, as you mentioned, everyone seems to react differently to treatments. Many of the people in the POEMS literature seem to enjoy dramatic, almost miraculous improvements from a stem cell transplant. I am also part of a POEMS acor listserv group on the internet and a number of members have had good results from a stem cell transplant. My own doctor here in Perth, Western Australia says that although we were hoping for significant improvements, if we have stabilised the disease then that's a good thing in itself. I am lucky that my mobility is better than many of the POEMS cases I have read about. I can function pretty much normally, albeit with some pain and discomfort. But, of course, I worry that my disease could progress. What is your situation? What are your symptoms and general state of health? I think the most difficult thing about having such a rare disease is that the doctors have so little experience. My doctor is a lovely guy but I am the only POEMS patient he has ever treated and I don't think he really knows what to do with me. They call these rare afflictions orphan diseases, and sometimes I feel very much the orphan.

 

On 11/30/2007 ladyfifi wrote:

Sorry to hear that Revlimid was not successful for you. Don't be put off by my experience with the stem cell transplant. It is possible that I may still get some improvement. Literature I have read by Dr Angela Dispenzieri states improvement in peripheral neuropathy in 3 to 6 months and I am currently 4 and a half months out. Also, as you mentioned, everyone seems to react differently to treatments. Many of the people in the POEMS literature seem to enjoy dramatic, almost miraculous improvements from a stem cell transplant. I am also part of a POEMS acor listserv group on the internet and a number of members have had good results from a stem cell transplant. My own doctor here in Perth, Western Australia says that although we were hoping for significant improvements, if we have stabilised the disease then that's a good thing in itself. I am lucky that my mobility is better than many of the POEMS cases I have read about. I can function pretty much normally, albeit with some pain and discomfort. But, of course, I worry that my disease could progress. What is your situation? What are your symptoms and general state of health? I think the most difficult thing about having such a rare disease is that the doctors have so little experience. My doctor is a lovely guy but I am the only POEMS patient he has ever treated and I don't think he really knows what to do with me. They call these rare afflictions orphan diseases, and sometimes I feel very much the orphan.

The most important is to stabilize the disease.  His diaphragms are weaker and that's scary because it's our breathing muscle.  He can't move his foot or toes but still able to walk with a crutch or a walker.   It doesn't matter whether or not it his feet comes back as long as the disease is gone.  His oncologist isn't familiar with the disease either but she does have someone to contact who knows about it.  We have to keep trying other meds that are out there until we find the right one and pray to be in remission.  Anyway, take care and keep me posted. 

 

I can't believe I found a POEM's patient and caregiver on this board! My husband was treated by Dr, Angela Dispenzieri at the Mayo in August 2006 for a stem cell transplant.  Many of his symptoms have totally disappeared but he still suffers from the neuropathy.  The quality of his life has vastly improved since the transplant, but we, too, wish we could find a cure for the neuropathy.  He is taking pain meds daily and neurontin and they help him manage the pain, but it's still a BIG part of his life.  I haven't heard of this new drug but I'm going to do some research on it.

 

On 5/21/2008 caregiver08 wrote:

I can't believe I found a POEM's patient and caregiver on this board! My husband was treated by Dr, Angela Dispenzieri at the Mayo in August 2006 for a stem cell transplant.  Many of his symptoms have totally disappeared but he still suffers from the neuropathy.  The quality of his life has vastly improved since the transplant, but we, too, wish we could find a cure for the neuropathy.  He is taking pain meds daily and neurontin and they help him manage the pain, but it's still a BIG part of his life.  I haven't heard of this new drug but I'm going to do some research on it.

I'm happy to hear your husband's stem cell transplant was successfull.  I'm assuming he's in remission?  My husband is taking Lyrica which helps a lot with the neuropathy.  For some reason, the neurontin made him feel weird. 

Did your husband try chemo at all?  How did this disease afffect him besides the neuropathy?  What was his health like going into the transplantation?  My husband can't do this right now because he's not strong enough.  He's taking Melphalan and Prednisone for 3 months and we'll see what happens after. 

Unfortunately Dr. Disperienzi is too far for traveling for my husband.  I know she's one of the best and hopefully she'll find a cure soon for the people who can't do a transplant.  This is a horrible disease and it's 3 yrs this year for my husband and nothing seems to work yet besides the prednisone which kept him stable until last year. 

 Anyway, again I'm soo happy to hear your husband is doing good.  Take care!!!

 

My husband's health was failing for five years before we went to the Mayo clinic.  Neuropathy was the first symptom, but then the disease began to attack other parts of his body. He was weak, fatigued, lost of lot of weight, had difficulty breathing, swallowing, etc. He slept most of the day and night.  He couldn't walk but a few feet before having to rest.  It was a nightmare.  He was rushed to the hospital twice, once they thought he was having a stroke, the second time a heart attack. Both times it turned out to be symptoms of POEMS...but we didn't know that then.  Finally a doctor at UCLA told us about POEMS in June 2005.  He tried oral chemo a few months later but it did nothing.  We then flew to the Mayo in June 2006 for an evaluation.  Because he was in such a weakened state, we were concerned he wouldn't be a candidate.  Fortunately, Dr. Dispenzieri determined he was strong enough to proceed.  We spent 7 weeks at the Mayo from August thru September 2006.   We knew within a few short weeks that the transplant had made a significant difference in his health.He's travelled back to the Mayo twice since that time and he is doing great.  He's back to work full-time and has regained all his strength.His breathing is back to normal, no more shortness of breath. He tried Lyrica but prefers neurontin.  Is is possible for you to travel to one of the other Mayo clinic locations?  Or the Cleveland clinic?  Don't give up!