[gemma5549Participant]

My mum has been diagnosed for a year with Multiple Myeloma. Her first treatment was Velcade/ Thalidomide and Dex. She has had her stem cells harvested and was waiting for a date for transplant but her para protein levels started to rise and it was postponed. They started her on revlimid which hasn’t worked at all. She gets transfused with irradiated blood on average twice a week but her hemoglobin levels are still dropping.  She had a transfusion on Saturday which brought her up to 93 but on Sunday morning it had dropped to 77 again. I’m just wondering has anyone been through anything similar and what the outcome was. They have decided to put her on Velcade again with Doxorubicin but I think this will be delayed until they find out why she is losing blood.

[debbiegParticipant]

Thank you for posting on the Myeloma Discussion Forum.  My name is  Debbie, and I am one of the Myeloma Information Specialists at Myeloma UK.  I am sorry that no-one has responded to your post to date.  I suspect this is because the situation you describe with your mum is a complex one, and there are many potential reasons for the drop in her haemoglobin level, which may or may not be connected to her myeloma diagnosis/treatment. It may be that none of the forum users have had the specific experience  you describe.  I would suggest that you/your mum ask the doctor or nurse specialist responsible for her care to update you on their perspective of what is happening.  It may be that the doctor is still investigating the cause, but if this is the case they should be able to explain what they are investigating so that you and your mum are kept informed.

If you have any further questions, or would like to talk things through, please feel free to call the Myeloma Infoline on 0800 980 3332 – I or one of my colleagues can clarify things for you further. Alternatively you can email directly to askthenurse@myeloma.org.uk.

With best wishes, Debbie

• This reply was modified 7 years, 11 months ago by  debbieg.
• This reply was modified 7 years, 11 months ago by  debbieg.

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