[jojomeddgooglemail-comParticipant]

Unfortunately it was the myeloma consultant who said it. I am just now hoping that we can get her infection free and back at home soon. Thanks for the support

[jojomeddgooglemail-comParticipant]

So. A lot has happened in the last few days. Mum was released from hospital as the doctor forgot to tell the nurses she needed to stay in due to issues with her liver. So she is back in now! I also spoke at length to the haematology nurse who said her paraprotein levels have been the same for 4 months now at 2.4 so she should does not need to be on treatment and is classed as in remission! It’s all been a complete mess and I’ve had to try to sort it and I’m hoping we are there now. Oh and apparently the doctor telling me she would be dead in 8 weeks of she came off the treatment was incorrect and due to either him mixing up his patients or not reading the notes! A fairly strong statement without being sure! This forum has helped greatly so thank you. Xx

[jojomeddgooglemail-comParticipant]

Hi. Thanks for this. I need to keep on at them I think. She is still in hospital but noone still seems bothered about her not eating and her quality of life. I have a call in with the haematology nurse to discuss things. They just keep saying she will continue on the treatment until it stops working. They have said nothing about remission and the doctor said If she stops taking the medication she will be dead in 8 weeks. No talk of a remission period which to me doesn’t seem right based on what I have read. Plus they say the treatment is working well. It is so difficult as different departments do different things. They need a project manager to look at everything like they do in industry! Thane for all of your kind words and words of encouragement. You guys have given me more info and support than the medics! Xx

[jojomeddgooglemail-comParticipant]

Just thought of another question, sorry. Hope many cycles of treatment did you have?

[jojomeddgooglemail-comParticipant]

Thanks so much for your kind words Tony. They really have helped more than you know. I will let her know too as I think she is thinking this will be her life from now on. I hope you stay free of active cancer for many years to come.

Thanks again

Jo x

[jojomeddgooglemail-comParticipant]

Hi. She is 76 and not having the stem cell treatment. Her main drug is Lenalidomide, she is on a low dose, along with a cocktail of others. She will need to be on some sort of treatment for the rest of her life but i was hoping she would go into remission then have to start again in the future but the specialist hasn’t said that. They have taken her off lenalidomide in hospital so I’m hoping they will change it to something else which will suit her more. She isn’t eating because she feels sick and its a vicious circle as the anti sickness drugs have a bad effect on her too. She also doesn’t have any sense of taste to add to everything! The specialist only seems to be bothered about the cancer and not her quality of life. Thanks for your response too, it really helps!

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