[gina45Participant]

I have been coming on the site for a while i dont post often but i do try to get on and see how everyone is.
I just wanted to ask for a little advice. My mum is due to go back to the hospital on the 3rd of June. she is on monitoring bloods at the moment. Each time we go they say no treatment yet as although paraproteins are slowly rising(33.5) other bloods are ok so they dont want to treat unless paraproteins rise dramatically or other bloods come back with problems.
Mum had another aspiration and xrays and there is no signs of myeloma deposits in bones.
Mum is a little worried as she is getting tired all the time and out of breath when walking. She also has just recovered from a bad chest infection. Do you think this is cause for us to worry, or is it just part of the package of having myeloma.
I would be most grateful for any advice on this it would be most appreciated.
Thank you
Gina x

[jmsmythParticipant]

Hi Gina

My husband diagnosed sept 2006. He is not on any treatment. His protein went up to 31 and then dropped to 24 started to rise again and now is 28. Dr said that would not start treatment as other bloods were within range and kidney function was good. She sent him for MRI scan three weeks ago but have heard nothing yet. We also go back in June. It sounds like they are similar. Frank has what be calls "power failures" he has a sleep and back to normal. He has had his share of infections – haemoglobin at 11.8 but he is happy that there is no treatment yet. Hope this is helpful – not sure if answered question but they both seem to be in the same boat.
My best wishes to your mum.
Love Jean xx

[PerkymiteParticipant]

"Power Failures" that is right on the button as a description for the tiredness 🙂 .

"Power Surges" would be a good descripton of the affects of Dex I think as well.

I have just come back from a very enjoyable couple of days with my Daughter, visiting the Zoo with my youngest Grandchild and then Sports day for another one. By Nine last night I had a major Power Failure, the only trouble is I was awake again by 4:30 this morning grrrrr!

kindest regards – Vasbyte

David

[brochoParticipant]

Hi Gina the fact that there is no sign of anything in your mums bm is great , I think this is a more important marker than pp levels which can fluctuate Chest infections can leave you exhausted for ages and I think the power failures is very apt, I can now fall asleep at the drop of a hat during the day!! If the docs arent too worried at this stage I would be reassured by that , Dr Yongs team are so thorough and experienced if they arent suggesting any treatment yet then I wouldnt worry too much , they do act quickly when treatment is necessary Say hi to mum for me love Bridget x

[gina45Participant]

Thank you to you all for your replies. I think my mum is just worrying a bit because she has always been so fit and active. She thinks she still should be. But you are right everything else is ok so we need to think positive. Thank you again for your advice, i am really grateful.
Gina x

[tomParticipant]

Hi Gina and Mum

Like all the others am pleased your Mum is Still holding back treatment 😀

And as for being tired :-/ tell me about it me I have fell asleep in the pub (and still sober he he) but my young bride Elaine now knows when I am getting tired and makes me go home/or stop what am doing (bless)

Yes its hard to sit back and wait but it has to be done am afraid :-/

All the best to your Mum on staying off treatment 🙂

Tom xx

[gina45Participant]

Thank you Tom, Hopefully the good news will keep coming, we do dread the dreaded hospital visits every 8 weeks but come away feeling relieved and positive so long may it happen.
You all take care of yourselves and i thank you all again for your advice and support
Gina x

[JetParticipant]

Hi Gina

I'm sure it's been explained to you/your mum that the tiredness and breathlessness come from anaemia which myeloma causes. I am nowhere near as drowsy as I was in the early weeks/months, but still have occasional lapses of energy. If I just go with it, I can quite enjoy the melting feeling of drifting off on the couch. Perhaps if your mum sees it as a positive thing – part of the healing process (our bodies do so much healing while we sleep) maybe she'll be less concerned about it…?

Jet

[Author]

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