[jeanroseParticipant]

Hi All

My husband is 46 and diagnosed with Stage 2. KAPPA lgA.

He had mgus and cidp for the last 10 years. Over the last 4 months, my husband lost the use of his hands, no feelings in them and struggles to do anything with his hands. Is this a rare side effect of myeloma?

My husband starts his first chemo treatment on the first week in Jan.
Thank you for reading.

[mulberryParticipant]

Hi Jeanrose, I’m sorry that you have found yourself in this exclusive club, but welcome to it anyway. The numbness your husband has sounds like peripheral neuropathy, which is a pretty common side effect both of myeloma and of some of the treatments we have. There are a wide variety of common symptoms at diagnosis, including neuropathy. These symptoms do usually get much better once treatment is underway and the level of myeloma is reducing. If your husband already has some peripheral neuropathy his doctors will be careful monitoring this and balancing drug dosages to be effective at reducing the myeloma without risking more neuropathy (if that is what causes your husband’s current problem). Best wishes, Jane.

[jeanroseParticipant]

Thank you for reading. I’m just worried about him. He sleeping all the time and no mobility and his hands are like claw hands.
We will be seeing the doctor next week to discuss treatments.

According to the letter sent out. Due to my husband comorbidies he would not be for to consider him for Auto SCT and Velcade carried the risk of worsening neuropathy.

They are considering Lenalidomide.

Question is if he can’t have auto SCT, will he still be able to get some quality of life back?

[mulberryParticipant]

Hi Jeanrose, not everyone has SCT and it isn’t essential to our wellbeing. In the UK common protocol is to have SCT if possible, but some health systems, such as USA, are moving away from it. Our overall survival times are statistically the same whether or not we have SCT, so the main benefit to us as patients is having a longer first ‘remission’ period. Some patients used to like having a drug free period after SCT, whereas without SCT your husband is likely to be on continuous drug therapy, although it’s now known that even after SCT patients do better on low dose maintenance, and lenalidomide was recently approved for this purpose.
I haven’t heard of anyone with myeloma whose condition/symptoms didn’t improve (totally or partially) once their myeloma was under control and once we’ve acclimatized to the drugs.
Keep hope alive, your husband is likely to get a lot better.

[kevinParticipant]

Hello
Just to let you know I was diagnosed when 46 and after a couple of hiccups am at present 15 years later in full remission. I was fortunate and didn’t have bad PN but would just like to echo what Mulberry written. Once treatment starts and the close monitoring begins things can be adjusted to sort your personal situation. I have found a positive attitude has been invaluable.
Best wishes to you both
Kevin

[Author]

Posts