New here. My mum was diagnosed with mm

Hi there Lizzie

I was diagnosed at 45, and went on to be treated with lenalidomide, dexamethasone and bortezomib (aka velcade) for four cycles. This is also known as RVD  it was very effective in my case, but myeloma is a very “personal” disease with a wide spectrum of outcomes. I was also given bisphosphates to help my bones where the myeloma had caused lesions in my spine and ribs. This helped with the back pain.

This treatment is often known as induction chemotherapy and it hopefully sets you up for a stem cell transplant once the myeloma is at manageable levels.

I can only imagine what you are going through. I remember at the time being reminded that the whole experience is often harder on the family of the patient - we as patients are looked after and it’s easy to do what you’re told and take the medicine you are given. Little care and advice is given to those around us. I hope you have someone that you can talk to and can give you strength. I wish your mum all the best of luck with her treatment and response.

R

Hi R,

Thank you for your response.

I hope you're doing fine now.

Mum is on biphosphates too, she even got a fracture 5 months ago (the first sign that myeloma showed)

May I ask, how many years has it been since your diagnosis? Have you undergone STC? Was it autologous or allogenic? 

You are absolutely right. Unfortunately, as my mother's sole caretaker, it's extremely hard, especially now that her mobility is extremely restricted due to the lesions in her spine. The pandemic and the fact that mum's on immunosuppressants now makes it impossible for me to reach professional mental help.

I hope I'll manage to stay healthy!

Lizzie

So sorry to hear about your mum. My mum is on her 5th cycle of Lenalidamide and dex. She had a huge plasmacytoma in her pelvis aswell as bone lesions all over including spine and severe pain at diagnosis- followed by a fall in May when her pelvis and collarbone fractured. Her mobility was virtually nil at that point and I genuinely couldn’t see a way forward. Fast forward 3 months and she has had a fabulous response and she is able to potter in the house and pain really well controlled. Of course its been said that everyone is different and that is very true, but I just wanted to say that it can get really bad but then, just like that things can pick up and improve- just hang on in there xx