Myeloma in the brain

FormerMember
FormerMember
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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
  • FormerMember
    FormerMember
    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
  • FormerMember
    FormerMember
    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.
  • FormerMember
    FormerMember
    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
  • FormerMember
    FormerMember
    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
  • FormerMember
    FormerMember
    . 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.
  • FormerMember
    FormerMember
    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
  • FormerMember
    FormerMember in reply to FormerMember

    Hi,.....My Mum has Myeloma and I researched this as I’m wondering if it is beginning to affect her brain. She’s on steroids and is 80 so one is uncertain. The brain is made up of bone around it etc which will affect it I’m sure, despite what another person suggested on here...I’ve looked it up before but it’s not at my fingertips at the moment.

    Could you share with me what you what the first symptoms you believe she had that led to you finding out for sure the Mupyelona had gone to the brain. I’d find it very helpful. 

    Love to you you and your Mum. X

  • FormerMember
    FormerMember in reply to FormerMember

    I’ve just read your details above....sorry seemed to have missed it before. Am I right in concluding that the CT scan found the Myeloma in the brain incidental if the other symptoms she was suffering from?

  • Hi

    You've posted on a very old thread from almost a decade ago and I think it's very unlikely that most of the people who were involved in that thread at the time will still be active on the site after all this time.

    It might be better if you start a new thread about your mother's condition so that more people will see it and current users will be more likely to respond.

    Best wishes

    Barbara

    “Scars are tattoos with better stories.” – Anonymous

  • FormerMember
    FormerMember in reply to barbaral

    Thank you.