Myeloma UK

Welcome to the Myeloma Discussion Forum

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The Myeloma Discussion Forum aims to provide you with a way to maintain regular contact with others, relieve feelings of isolation, share experiences, chat about day-to-day challenges and learn more about myeloma.

more information/terms and conditions

This is a moderated Discussion Forum, which means Myeloma UK staff are on hand to provide guidance and answers to difficult queries that arise in the Forum.

The Discussion Forum is available to all those affected by myeloma and its related conditions: patients, family members, carers and healthcare professionals. Everyone’s contribution is welcomed and encouraged; the more people participate the more everyone will get out of the Forum.

Please note that any posts you make to the Discussion Forum are public.

We ask that you view our Forum guidelines and registration terms before contributing to the Myeloma Discussion Forum.

If you have any problems accessing the Myeloma Discussion Forum, or any issues concerning the content of any posts or the service in general, please contact the Myeloma UK Infoline on 0800 980 3332 or email webteam@myeloma.org.uk.

- Forum
- Latest post
- Topics
- Posts
- Newcomers
- Reply To: Bewildered
  
  Hi, Linda It sounds like you have been diagnosed with what is called “smoldering myeloma”. It means that your myeloma is not yet symptomatic. It is true that this stage is usually not tre…
- 1 day, 1 hour ago
  Gala Connell
- 616
- 6,972
- General
- New study
  
  Big investment in research. As someone diagnosed with MGUS (lost my dad after 15 years with Myeloma last year), this is very interesting http://markets.businessinsider.com/news/stocks/stand-up-to-can…
- 3 days, 8 hours ago
  Rosie 1961
- 1,013
- 10,451
- Treatment
- CAR-T cell therapy
  
  Hello, my name is Fares Ibrahim from Lebanon. I am 59 years old and I was diagnosed with multiple myeloma in May 2012. Ever since my diagnosis I have had 2 BMTs at the American University of Beirut. …
- 23 hours, 44 minutes ago
  Fares Ibrahim
- 765
- 9,445
- Side-effects
- Reply To: Zometa withdrawal symptoms
  
  Hi crawf, I’ve been on monthly pamidronate rather than zometa, finished chemo Feb 2016. I’ve never thought I had any effects from it. While on chemo, CTD, I used to have moments of weepin…
- 2 weeks, 5 days ago
  taffd
- 266
- 2,460
- Related conditions
- IgM Paraprotein and Anti-MAG antibodies
  
  Could anyone out there shed any light on Anti-MAG neuropathy? I have a small amount of IgM paraprotein and have just found out from my Haematologist that I have raised Anti-MAG antibody levels. Fits …
- 2 weeks, 6 days ago
  misswoosie
- 44
- 393
- Smouldering myeloma / MGUS
- Reply To: Daratumumab trial for smouldering myeloma
  
  Hi Peter I wondered if you had made a decision about the Daratumumab trial? It was mentioned at my Husbands review today. PP up to 29.7 so May just meet the eligibility criteria. Can I ask what your …
- 1 week, 6 days ago
  janeb
- 48
- 404
- AL amyloidosis
- New AL amyloidosis videos on Myeloma TV
  
  I am pleased to announce that we have four new AL amyloidosis videos available on Myeloma TV. These are short (3 – 5 minute) films, each focussing on one of the following four topics: An overvi…
- 9 months, 3 weeks ago
  shallahan
- 19
- 77
- Carers
- Reply To: Problems with husband's behaviour…..
  
  Yes I think that’s right….he has had the steroid dose lowered and I think this has helped, also we have had a good chat about things and again this has helped too. Onwards and upwards!
- 3 weeks, 6 days ago
  adelaide56
- 105
- 1,146
- Under 50s
- Reply To: Mum recently diagnosed – what to do?
  
  Hi Tahlia, how is your mum now? My mum was diagnosed just before Christmas 2014. She had a lot of symptoms that had been ignored by GP but it was still a big shock… Especially as none of us had…
- 1 month, 2 weeks ago
  natdarke1
- 72
- 843
- End of Life and Grief
- Reply To: My Dad Passed Away
  
  Dear Clover, my thoughts are with you at this time. My dad died on 5 Dec after many years with Myeloma. I hope that you are able to find peace, but it is early days and it’s ok to grieve. Give your…
- 3 months, 3 weeks ago
  Rosie 1961
- 129
- 1,553
- Off topic
- Myeloma Infoline
  
  The Myeloma Infoline is currently available Monday – Friday, 9am – 5pm (closed weekends and some public holidays). We aim to have at least 80% of calls answered first time by a Myeloma Informatio…
- 2 months, 3 weeks ago
  Ellen Watters
- 347
- 2,850