Thanks Maureen,

So pleased to hear you’ve had a holiday – and you’re leaving Cornwall before the worst of the rain, I think.

Will be praying for Ian and for you on Monday.

Have a good weekend.

Sarah x

For the first time in over a year we have some progress and some good news. M has had 2 cycles of DT-PACE and is due to start a 3rd next week. He had a bone marrow biopsy last week and this afternoon his consultant told him that there were no myeloma cells in his bone marrow.  Myeloma cells were over 50% in May, the week before his first DT-PACE…[Read more]

Well done! At least you know for next time that it’s nothing to worry about.

My hubby didn’t have his. They took him to the mobile up-to-the-minute  machine in the car park, and, because of his spinal damage, they couldn’t get him into the position they needed so had to abandon the effort. The older machine  has been fine before, so a bit of a w…[Read more]

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]

One of the best pieces of advice I was given when my husband was diagnosed was to look at this website for information as so much of what is on the internet is out-of-date and inaccurate. The doctor who gave me this advice said that the picture would look much bleaker if I just randomly trawled the internet as treatments have improved hugely over…[Read more]

Hi  Susie,

My husband has an MRI booked for Friday too. He’s had a few now and the first one was when his initial plasmacytoma was spotted – in a kind of “we don’t know what this is but we’re not happy” way. He says he has always been in head first – I’ve just asked him.

The radiographers are used to people being nervous, so do tell them if you…[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]

Hi Denise and Carol

It’s a sad fact this disease has a massive impact on all family members,most people know there is something wrong but when it’s diagnosed it comes as an awful shock,I think it’s because there are so many different symptoms,either bad backs,or broken bones,there are only 3000 cases a year in this country,then you get the…[Read more]

Hi James

They like you to be 12 months clear and to have had a good response .nice guide lines is it’s allowed if you have had a good response .

Revilimid they usually use until it stops working.
Pomilidomide is the latest one coming out in trials.

When he says chemo!!! Is he talking just cyclophosphamide ????

You can go into trials on the…[Read more]

Hi Pat
Good to see you back. Can’t help here, I’m still very plagued by PN in hands and feet but am 5 months behind you, so I’m just hoping it settles down eventually. Mine is much worse when I’m very tired – I’ve noticed I’m very clumsy and can’t open jars and stuff.
Love Helen

Hi Sarah,

I don’t think there is any real answer to this. Nurses and doctors can alert you to possible side-effects and your mum might or not experience them. Like everything else in myeloma, side-effects vary with individuals. My husband’s first-line treatment was 5 cycles of Velcade with Cyclophosphamide and Prednisolone. He didn’t experience…[Read more]

Hi Vicki

I know it’s really worrying and stressful when you see light chain numbers increasing. However, hopefully it’s just a blip due to Colin’s recent virus on his holiday. My light chains usually increase by 200 following a cold virus, but six weeks later they drop again sometimes back to their original number and sometimes just slightly…[Read more]

Totally right Carol, I stayed well away from folk when I got shingles. Chicken pox is pretty awful and can be fatal to immunocompromised people like us. My cousin, who had leukaemia, caught chicken pox from his granddaughter and he died as a consequence of it. Sorry for being morbid but it’s a dangerous disease.
Helen