[cartdawParticipant]

hi my name is Dawn and after having been through hell for the past 3 weeks have been diagnosed with smouldering myloma.  Its is a very scary time and although no treatment at the moment , I am assurred it will turn into myloma at some time.  My family have been very supportive but its difficult to talk to them sometimes as I feel as if i am wanting to talk about the condition but now they know there is no treatment for now they are all a lot happier and I still feel scared, angry, etc.   I was diagnosed by chance at the gp surgery persistent protein in my urine followed up by blood tests at my insistence after 3 chest infections since xmas.

[nikkihamiltonParticipant]

Hi Dawn

its very scary but you’ve come to the right place. Any questions will be answered I should think. Try not to google. That’s the mistake I made.

I was diagnosed multiple myeloma 3 1/2 weeks ago and am still in shock. I only plucked up the courage to come on here yesterday. So well done you. Hopefully you’ll feel like me and another hurdle jumped.

Im 43 and reasonable healthy lol. Don’t fit the category but after reading other people’s stories its given me hope.

Good luck and if I can help I will. It definitely helps to discuss it. Or it does me at the mo. it’s the not knowing.

Nikki

[graemeandrewarthaParticipant]

Hi Dawn

Welcome to this very helpful forum with plenty of help and support. I was diagnosed this March and now on my 4th cycle of chemo, steroids, thalidomide and a few other things thrown in. Bone strengthening just started.

My main advice at the beginning is to take someone with you especially at the beginning then discuss it later so that you both agree on what was said. Later when you are in a routine it becomes easier. Same with pills and potions (mine have their own container in the cupboard). Can be boring but needs must!!!!!!

Steroids in the morning (keeps you buzzing in day) & thalidomide at night (supposed to make you sleepy). Carry on with your life but try not to dwell on it.

You will see some have put reams of their medical history on their site. I just let the consultant tell me if all is going well and don’t get bogged down with the complete medical names. Purely a personal thing but reduces my worrying.

As you will see plenty of info and from those of the same age and gender if it helps you.

Take care and all the best for the future.

Graeme

[jmsmythParticipant]

Hi Dawn

Sorry you had to join the forum but as said before you are in the right place for advice, info and friendship. My husband was diagnosed in September 2006 with smouldering myeloma. Like you it was discovered by chance. We had 7 years with only treatment being
Zometa infusion to strengthen bones. He had this for about 18 months then went on to 2 monthly visit. Frank had cell transplant in March 2013. He attends hospital every 4 weeks as consultant wants him to,have Zometa again. There is no detectable protein.

I know it is difficult at the beginning to get your head round it. I wanted to know all about Myeloma but Frank didn’t. The only time it was mentioned was before a hospital visit. We lived and holidayed right up to treatment starting and then continued after recovery from SCT. One thing I found a great help was a Myeloma diary. It is available free from the forum. It has different sections and an area to record blood readings. So at a glance you can see what is going on.

Ted, a member of the forum has been smouldering now for nearly 8 years – I think and as far as I know he is not on treatment.

Hope you smoulder for many many years
Jean

[cartdawParticipant]

thank you for your messages of support all of you , I am just getting my head around it.  Im 57yrs old and work part-time as a midwife so Im happy to smoulder  for a few years yet but hopefully will be better prepared if I have to have treatment.  I have to have my bloods taken every 2 – 3 months at the moment.

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