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: New member
  
  Welcome Pauline. Myeloma is a complicated condition that certainly takes a while to get your head around. Hopefully between us we can help you find your way through the maze that is Myeloma! I know I…
- 4 hours, 47 minutes ago
  paulapurple
- 571
- 6,723
- General
- I'm still standing! Celebrate the little things
  
  My blog this week is about appreciating and celebrating the little things in life. My treatment wasn’t working and it is easy to get depressed about it until a friend reminded me that I was sti…
- 4 hours, 41 minutes ago
  paulapurple
- 983
- 10,321
- Treatment
- Reply To: Side effects of Ninlaro(Ixazomib)
  
  Hi Ann, How is your husband getting on? My husband is starting Revlimid, Ninlaro and dex next week, for 3 cycles. My husband is still coughing – I hope it doesn’t get any worse on thi…
- 2 hours, 3 minutes ago
  tmcintyre
- 746
- 9,277
- Side-effects
- Reply To: Nausea, Vomiting and Weight loss
  
  Hi sabs I am on Carfilzomib too. I had it twice a week for the first cycle but this was so toxic that it caused liver damage and we had to reduce the dosing to once a week only. This has been as effe…
- 2 hours, 20 minutes ago
  finn
- 248
- 2,388
- Related conditions
- Reply To: Neuropathy
  
  The only relief I have found for my neuropathic pain, which first began 7 years ago when I received oxaliplatin for colon cancer, has been a combination of fentanyl and oxycodone. I have been takin…
- 3 weeks, 2 days ago
  Michael
- 40
- 377
- Smouldering myeloma / MGUS
- Reply To: "Possible" MGUS 3 months ago,awaiting results of repeat blood/urine
  
  Hi Susan, how are you? Did you get a follow up with your hematologist? Xx
- 2 days, 7 hours ago
  lucifer
- 40
- 357
- 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…
- 3 weeks, 6 days ago
  shallahan
- 19
- 77
- Carers
- Reply To: Myeloma & ARMD (Age Related Macular Degenertation)
  
  Thank you for posting on the Myeloma UK discussion forum. My name is Debbie and I am one of the Myeloma Information Specialists here at Myeloma UK. As far as we are aware there is no connection bet…
- 7 months ago
  debbieg
- 101
- 1,113
- Under 50s
- Reply To: SCT
  
  Thanks for that – ill have a read over the weekend I hope that it doesn’t cause much sickness / nausea which seems to be our biggest problem with pretty much everything – week off f…
- 2 weeks, 4 days ago
  sabs
- 65
- 794
- End of Life and Grief
- Reply To: Goodbye to the lovely Sandra
  
  Hi John There is a myeloma group on facebook. It is a closed group so you have to ask to be added. Maureen
- 17 hours, 11 minutes ago
  Maureen Sinclair
- 125
- 1,543
- Off topic
- Reply To: The Perfect Pair in aid of Myeloma UK – in Kidderminster, Worcestershire
  
  Sounds great Adrian….every bit we can all do is really great. Hope the SCT goes well for you – Take it easy afterwards, listen to your body and don’t overdo it! Fundraising can all …
- 3 months ago
  DebGascoyne
- 344
- 2,845