[woo1967Participant]

Hi all, I have felt unwell since June 2013, suffered with swollen glands sore throats and general aches and pains. Then in October I discovered a breast lump and got face tracked to see a specialist, my tests were inconclusive so they decided to operate and remove the lump, thankfully 3 weeks later I was given the all clear. 4 days after this the throat infections hit with a vegence, along with a severe infection in my eyes, I was in such pain I cried. Then Christmas eve during a check up bloods were taken and I was told I had a severe viral infection that would run its cause. New years eve my vision was so blurred I could not see. I phoned the Dr who informed me my results were back he told me on the phone I had extremely high levels of protein in my blood and they indicated cancer. My life crashed, my parents were away so I waited for them to return. My mom died suddenly on the day they were due back! I had my appointment with the consultant the following week who mentioned myeloma and ordered Xrays immediately,  I then had my bone marrow biopsy and the Dr said it was so they could stage the myeloma! I see my specialist this Wednesday, I am so scared,  I had shingles 2 years ago and have been told this can be a trigger. Am I panicking too soon?

 

Any advise would be welcome, wendy

[dickbParticipant]

Hi Wendy,

Don’t panic, you are going through the same emotions as virtually everyone else on this website has had. The good news is that it’s been spotted so it means they can treat it sooner. Have you read up on it yet, if not do so but be wary of everything you read on the internet. As you’ve probably been told, MM is such an individual desease for everyone, everyone is different. Do you have the results of the biopsy yet? What about X rays and kidneys? You need to drink a lot if they haven’t already told you and I suggest you speak to one of the Myeloma nurses if you haven’t already. They will help you to understand your illness and what it means. At least you are in a very good place on the forum and whatever you go through, there is a very good chance that someone on here has experienced it already.

Richard

[johnandjunediamondParticipant]

welcome wendy,
as richard rightly said,it’s not the time to panic,you need to consider what question’s you might need an answer to when you meet your consultant,
ask about your liver & kidney function and anything else on your mind
write them clearly in order and dont allow yourself to forget to ask them all…most can be answered by thier assistant imeadiatly after your appointment ( try to write the answer’s down trust me you will have forgotten most of it in ten minutes as you will be in a bit of a daze )
good advice is to get yourself a decent ( page per day diary ) it’s important to keep your own notes as the shock of this diagnosis will mess with your memory for quite some time,as your mind reprioritises your lifeplan.
eat healthy drink more water and take care of yourself….the drug’s that can halt this desease
are extremly powerfull and will take there own toll on your system so you need to be prepared to fight…..leave all othier things to your family if poss,very best wishes, john.

[woo1967Participant]

HI Richard & John

Thank you for your responses, I am due to get my results from tests on Wednesday.  I was hoping that I would be told it was smouldering or MGUS, although from the research I have don on here I am now thinking otherwise.

I initially used google to research, then a friend of mine who works at a Bupa hospital gave me the information leaflet from Myeloma uk – I have not looked anywhere else since as this seems to be the most informative and best site.

I will let you know how it goes Wednesday.

Thanks again, Wendy

[mhnevillParticipant]

Hi Wendy

What a rotten and difficult time you are having.

The unfortunate thing about MM is it creeps up in very varied ways making diagnosis difficult as you have realised.

Do keep in touch and let us know how things go. This is not a nice disease, but there are worse, AND, we do get through all it’s challenges. I’m sure you will get lots of support here.

Love.

Mavis

[woo1967Participant]

Thank you Mavis, got my results  and  I have smouldering myeloma taking this as good news. I would appreciate any advice anyone can give.

 

Thanks, wendy

[angeParticipant]

Hi Wendy

Hi Wendy

I was diagnosed with smouldering myeloma in August 2012 so know exactly how you are feeling. After reading about it, talking to the nurses on this site, joining our local support group and attending information days I gradually accepted the diagnosis and just got on with life. This took some time and it was hard talking to family and friends and work etc. I requested the myeloma matters publication and a patient diary etc from this site. I then attended each clinic appointment and made the most of the time treatment free with my family. Everyone is different and some people smoulder for many years. I was told that I was high risk and would progress within 2 years. It has been 20 months but now my paraprotein is rising very high and there is talk of treatment. I have another bone marrow biopsy on Monday to decide.

I think the best advice is to look after yourself, drink plenty of water and keep using this site, not the scary sites that are outdated! Hope that helps a bit Andrea xx

[teds31Participant]

Hi Wendy, I have had Smouldering myeloma for 7 years and still going strong, I have been lucky I know that, but every one is different and its a very individual disease. While you are smouldering do as my consultant advises and make the most of it and live every day. Good luck and may you smoulder for a long time. Ted

[woo1967Participant]

Hi All I got my results last week – its smouldering Myeloma – back for further blood tests in four weeks – at the moment my paraprotien level is 15% – dont really understand what this means – the consultant said he needs to build up a picture of how  slowly/rapidly it is developing.

Finally returned to work Monday after losing my mom in January and going through all this – phased return for two weeks – but picked up a cold which started Saturday – I have been told if I feel under the weather I must go and see my GP – how do I find the balance? Do I ignore the cold or go to the Dr’s??

Thanks all so far for the advice given.

Thanks Wendy

[teds31Participant]

Hi Wendy, The amount of Parprotien in the blood gives a indication of the progress of the MM it can vary quite a lot and is different for each person as MM is a very personal disease, mine last time was 12, not a lot different to yours really.I go 3 or 4 times a year and they just take the blood samples and measure the Paraprotien and the light chains to judge if you are progressing or staying stable.If you read the leaflets on this site it gives some idea of what each test means. Ted

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