Myeloma in the brain

Myeloma

Myeloma - also known as multiple myeloma or myelomatosis - is a cancer of plasma cells in the bone marrow. This group is for people affected by myeloma to share experiences and support each other.

Myeloma in the brain

No. of entries: 7 | Posted on 10 Feb 2009 09:57
  • My friend has just been told that the Myeloma has gone to her brai. The doctors are going to give chemo via a lumber puncture. Please can anyone tell me what we can expect.

    Thank you
  • Payton, Are you sure its Myeloma? Myeloma is called Multiple Myeloma because it appears as lesions in multiple locations on the body. Where it shows up is not a determining factor in the outcome. Nor is what "stage" she is in. So I was just checking to see if you are correct in that its Myeloma she has. There are some good sites I can steer you toward.

    Best,

    Lori

     

    "Life isn't about waiting for the storm to pass.  It's about learning to dance in the rain!"

  • Yes Lori it is defiantely Myeloma. It started in her pelvis and ribs 2 years ago, 18 months ago she had Chemo. She came out of remission towards the end of last year. It has definately spread to her brain, she had CT, MRI, Bloods and urine tests and a Lumber Puncture. Myloma in the brain was confirmed yesterday and I can find nothing about it.
  • I guess that is what is strange. Myeloma is a disease of the bone marrow, not organs. The only thing I know involving the organs is that renal failure can occur due to the high levels of paraproteins, or calcium (I don't know which). That's what is causing the confusion for me, and why you may not be able to find any data on it. When we do a bone density scan we are looking for "holes" in the skeleton. My husband has been impacted from the skull down to the pelvic area and everything in between. They look like plugs. Check on YouTube as there is quite a bit of data there. Also in our Myeloma Let's Talk Group there are some website links. But I'll be honest, I've never heard of Myeloma "in" an organ. But I'm not a doctor, just a caregiver. Sorry I couldn't be of more help.

    Best,

    Lori

     

    "Life isn't about waiting for the storm to pass.  It's about learning to dance in the rain!"

  • I only found this: I didn't have time to fully read it and the typing is weird with awkward spacing in the typed words. Anyway, I hope that perhaps it is helpful and will increase discussion with the docs and understanding. Best, Lori

    http://homepage.vghtpe.gov.tw/~jcma/6603/660308.pdf

     

    "Life isn't about waiting for the storm to pass.  It's about learning to dance in the rain!"

  • . In October 2008 she complained of pains in spine below her neck and was told the myeloma would not be back that quick, after weeks of going back and forth they found out she had a tumor on her spine, they zapped it with radiation in December. They then decided to try and treat her using Velcade. In January she was admitted to hospital with pnumonia (apoligies for spelling) they found it very hard to bring it under control, she then went on to get cdiff and was extremely weak, her body held onto the liquid and she rapidly went down hill. She could not eat was on oxygen and nebulisers to help her breath and we thought we would lose her, so did the doctors. They were treating her with a massive cocktail of antibiotics, antifungals and steroids. She then just slept, couldnt open her eyes and stopped talking, her right leg would not move and she could hardly move, and sometimes her speech slurred - her personality hasnt changed. Having done a CT scan they found fluid on the brain and a blocked pocket blocked by swelling - Last Friday they did a Lumber Puncture, today we have found the Myeloma has gone to her brain. Its is also in her spinal colume and hip. MM in the brain is extremely rare and finding info on it is hard. She is a fighter, but doctors have now given her 8 weeks if we are lucky.

    I do hope they manage to get your mum back into remission.
  • Sorry I should of added - Her MM was first found in 2006 when she had chemo and stem cell went into remission - she relapsed in 2008
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