[teepsy3Participant]

I caught a bad virus which went on and on and then developed a bacterial infection in my lungs and was taken into hospital on the twelth day of my illness as i was deteriorating and in great pain in my back, hips knee,legs and feet.After routine blood tests and being in isolation for three days ,they did a myeloma scan as I had a high level of globulin in my blood (40) and urine samples.

I was discharged on the third day having had a chest xray which showed a cloudy patch bottom of right lung.Went to doctor a week later and was told that the first blood test he had recieved were not good and he had been instructed to chase up the myeloma scan.This was the monday,and on the thursday evening he phoned to say he had more results and that I has myeloma and he was going to arrange a bone marrow scan,which is next monday 25th January.How long do the results usually take to come back for a myeloma scan?The virus I had has now gone and I have another chest xray booked for 8th February but I have been told I am anaemic although I eat lots of greens and take a multi vitamin and mineral supplement which contains iron,I am left with bone aches in my feet,legs,hips and back.The waiting is the worst but I am hoping I have a mild form,but wonder how long the results will take from having the biopsy?I am 71 years old.I always put the pains down to old age or over doing the gardening etc.

• This topic was modified 8 years, 3 months ago by  teepsy3.
• This topic was modified 8 years, 3 months ago by  teepsy3.
• This topic was modified 8 years, 3 months ago by  teepsy3.

[ellenModerator]

I am sorry that, as yet, no one has replied to your post. I hope you don’t mind if I do, my name is Ellen, I am one of the Myeloma Information Specialists at Myeloma UK.

Anyone suspected of having myeloma should be referred to a haematologist. Myeloma is a very individual and complicated cancer and the diagnosis involves a whole range of tests and investigations. Generally you should have any results within a week to ten days.

If you would like to talk to me or one of my colleagues please call the Myeloma Infoline on 0800 980 3332 or email askthenurse@myeloma.org.uk. We will do our best to answer any questions you have, or clarify anything that you’re not sure of.

Meanwhile here is the link to our ‘Myeloma – You Essential Guide’ which I hope is helpful.

http://www.myeloma.org.uk/information/myeloma-uk-publications-list/essentials/myeloma-your-essential-guide/

With best wishes

Ellen

• This reply was modified 8 years, 3 months ago by  ellen.

[cygnetParticipant]

Hi Teepsy

Sorry to hear you’re having a difficult time. I don’t know if this helps but I had my results about four weeks after my biopsy & skeletal scan.

The waiting is definitely the worst bit ( although it may not feel like it so soon after your bone marrow biopsy!!) It helps if you try & stay distracted & busy but do talk to the Helpline Nurses as they are very supportive & knowledgeable. The folks on here are very supportive too!

Take care,

C xx

 

[teepsy3Participant]

I have smouldering myeloma as far as the haematologist has said and have to go back on 25th March for new blood test results.He didn’t do the bone marrow biopsy after all and wants to do a wait and see approach initially.  I have an m spike which is high and slight anaemia which is the only CRAB marker so far.It’s just the not knowing when or if it will progress to MM. Can anyone give me info about the possibilities? I am 72 next birthday and have had bone pain since last spring

[Anonymous]

Hello Teepsy,

“.It’s just the not knowing when or if it will progress to MM” ..welcome to the world of smouldering…i’ve been like this since August 2014 finally confirmed in October 2014( only aged 49 at time of diagnosis) and then monitoring, i would like to wave a magic wand for you and say it gets easier, I’ve found some bits do, like not spending every waking hour trawling the internet for answers but blood tests results I haven’t found this easy at all every 3 mths, so once i’ve had the test two weeks before my appointment I set my set little tasks each day and also little treats ‘i’ve found this does help. I also have a very good GP who will tell me my results before the consultant if they have come through this helps me to know where I am and what I can ask at the appointments. Chin up its not all bad there are some fabulous people on this site so dont be afraid to ask them,

hugs Helen

[janebParticipant]

Hi Helen.

My husband diagnosed with SMM aged 44 Nov 15. Still coming to terms with the diagnosis.

PP currently 23.8. Been advised that may he be eligible for clinical trial with Daratumumab which is a new monoclonal  antibody if/when PP rises above 30. Does anybody have any experience if this drug?

jane

[cygnetParticipant]

Hi Jane

Sorry to hear about your husband – I’m not surprised you’re both still reeling from the diagnosis. I’m not sure I’ll ever totally get my head around my situation…

Have you seem Myeloma UK have an info sheet on Daratumumab? I think there is also some info on it on the Myeloma Beacon website which is a reliable source too.

Good luck

C x

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