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…[Read more]

Morning Nikki and Wendy.
First of all steroids will give you lots of sleepless nights it’s a very common side effect of Dex. They lift you up and you’ll talk a lot! Maybe eat more than usual and possibly even work around the house doing odd things! Then you’ll crash and become moody and argumentative. Such is the joys of dexamethasone. Oh and…[Read more]

Hiya Vicki
I only take Dex once a week now. 40mg every Tuesday! So I’m usually awake Tuesday nights and part of Wednesday night. Though it’s not been to bad this week.
My PPs showed a slight rise at the end of last cycle tut guess I’ll never get them down to single figures. I feel ok though my back is starting to let me down again.
I’m sure…[Read more]

Hi David.
Hope your visit re prostate goes ok.
I’ve had a catheter in for at least 2.5 years now guess I’m used to it now! Though it can be a nuisance at times especially in a pub!
My appointments seem to be piling up and they’re spread over the next 5 months though none clash with anything planned as yet. My main worry is my back review in…[Read more]

Hi Nikki and Wendy
Welcome to the club that none of us would choose to join.
First multiple myeloma as you may already know is a cancer of the blood marrow. It called multiple myeloma because it can present in many different places. The most common first symptom is back pain. Which was my introduction to meyloma. Other indications are broken bones…[Read more]

Evening Wendy, I was 67 when I was diagnosed with light chain myeloma, returned from a holiday in the Far East with a chest infection which my doc diagnosed as pneumonia. That was cleared and had several more infections, loads blood tests and three months later was diagnosed with myeloma. No bone pain, kidney function ok. Was/ am on the myeloma XI…[Read more]

All the best with your MRI scans, I fell asleep while I was having mine! Haha
Regards
Tony F

Also Hi to Tony and Val, I have been so happy that my thread has given me the chance to share experiences with so many people. It is a privilege and a pleasure to read about others journeys.

I hate being a pin cushion, I always get a bruise that takes ages to go, but at least they don’t have to try more than once so there is a positive in there…[Read more]

Hi Susie

I have only seen MRI on TV and so hesitate to advise.

Hope all goes well for you on Friday, I will be thinking of you.

Let us know how you get on.

Karen

Hi Veronica,

I had my SCT in 2012 and this year since about February I have been having severe bone pain in exactly the same place, also I get bad cramps in my legs which my consultant has given me Quinnine for.
I’m going to see him again in July, so hopefully will get some answers, as last time I mentioned the bone pain he didn’t seem to be…[Read more]

Hi Chrissie

What you have said resonates with me, and I suspect with many of the people using this site.

I haven’t got to the place in my journey where I can get the ” OMG I have cancer” out of my head. I sort of ( silly I know) hope they will tell me there has been a mistake, because although I do get fatigued and have some funny tinglings in…[Read more]

Good evening, so sorry that you have to be part of this group.
You have every right to be concerned, this disease is a bugger and effects us all differently. I hope that the following will give you and your dad some encouragement,I am 70 in August, was diagnosed with myeloma in early 2012. Was put onto the myeloma XI drugs trial, that lasted for…[Read more]

Damn predictive txt. Should read I’m there for Frank when he needs me

Mike damn predictive text. My spelling isn’t as bad as above
Jean

Hi Mike

Long long May tour remission continue. My husband smouldered from 2006 and had SCT March 2013. We were at co sultNt today said his protein was not dectable all bloods were god and to go away as he could not find anything wrong with him. Frank doesn’t come onto the site but when I read your response to Rebecca about drinking g the water…[Read more]

Hi Mike

We come from the south east coast,called Deal,you can see France on a clear day.
Slim used to have treatment in Canterbury,but was refused any more treatment at Christmas,Faith Davies agreed to treat him,we usually hit the rush hour going as clinics are in the morning,always the odd accident,it’s M20M26M25.then 8 miles to Sutton ,it…[Read more]

Hi Fiona

I also hate the word carer. I’m not there for Frank when he needs me, just like he’s there when I need him and I certainly do NOT consider him as my carer. I agree “family” might be. Better option

Best wishes
Jean

Hi Jane

Welcome back,you have been through the wars,battling away,so glad you made it,to tell us about it.

Let’s hope this is now your time!!! Go out there and enjoy every minute,the experience does give you a different out look on life.

Ours is being here each year to smell the blue bells,heaven on earth that smell.Eve

Hi Sandra

Just to say welcome

As you know your condition is rarer than Myeloma! I believe 600 cases a year,I would go back in to Related Conditions,you should find a few in there with Amyloids in the heart,they one I am thinking of is an Ozzy who lives with this condition who also travels,so might be worth a search.

Good luck on your journey,my…[Read more]

Hi Mike and welcome

I think may be what you do not realise is your good news of lasting seven years,if you look at statistics when you are a new MM it’s depressing,and some one like you comes along and says 7 years,you give the newbies so much hope. The waiting room is so small at the Marsden,bit like sardines in a tin,you cannot help but talk…[Read more]