Hello Keith
Just caught up with this thread. Well done you. Glad to hear you are doing well post sct. The appetite took a long while for Colin. He has since started to eat normally and put on weight. He still gets tired on and off but he’s done well so far.

Hope all going well for you Tom?

Vicki and Colin x

Mike

Just wanted to say thanks for the post. My partner Colin was diagnosed in 2011, had sct in November 2012 and has been in complete remission ever since. But I feel nervy as time goes on, as we were told the average remission is 18 months…..it’s always good to hear of someone who gets a long remission. Long may it continue for you. It’s…[Read more]

Hi Susan

Just wanted to say I hope your results are good. As Mavis said your pps are low. Our consultant doesn’t say exactly what the results are just that they are ok, long may that continue!, just keep going and if there are things you believe in, carry on 🙂

Vick and Colin xx

Ali, hi, just caught up with this post! What a bugger I can’t believe this. Why can’t this mm just stay out of our lives, I’ve had one of those days when I’m having a downer on it…..Colin’s fine but I’m having a what if time. As regards your mum I don’t know what a plasmacytoma is….is that the same as when Colin had a fractured vertebrae at…[Read more]

Hi Helen, and all,

Sorry not tuned in for a while. Been trying to have a bit of normal life…..I thought not tuning in would make the myeloma bubble disappear but it’s always there in the background. Helen I’m so sorry to read that you have relapsed again. This blinking disease has no respect for anyone or anything. I keep reading about…[Read more]

Hi Rosie,

I was interested in your comment that “he has been on Revlimid for 2 years now”. My understanding is that the MHS gets Revlimid free after 16 or is it 18 cycles of treatment. Is this the case with Jeff he would have done 24 cycles in 2 years. And, as a matter of interest has he reached Good Remission on it or just a low PP…[Read more]

Hi Michellew, Slightly confused 2% of all newly diagnosed cases of cancer? Does that mean 98% of all cancers are other cancers? If that is the case then Myeloma is surely a rare cancer, which is what I have always understood. Approximately 4,000 pepole being diagnosed a year is the standard figure I believe.

What about the other long time…[Read more]

I was going to post ant then I read everybody’s efforts and thought they have covered it all.
However, my penny worth is:

Definitely buy the folding walking stick. Myeloma attacks the bone and failing over and breaking a shoulder bone is really not an option you want to live with.

Definitely drink the water, I was told 3 litres a day, and it…[Read more]

Hi Rosie, I have been on this site since 2009 and I have not heard of “myelomatous deposits”. Sorry, I realise that is not much help to you. That just may mean that they, whatever they are, are generally referred to as something else! You do not say whether any treatment was recommended which would give a clue to what myelomatous deposits…[Read more]

Aha. But I have the answer.

Many years ago, I was being recruited for a job. The recruiting company put me up in a very 10 star swanky cottage hotel, in Wales. This was around 1980 and the wine list started at £60 a bottle! Two guys discussing buying Oil Wells sat discretely over the room from us. We had a wonderful dinner but the wife…[Read more]

Well you guys are really going through the mill – I feel like a fake when I have my few problems. However, I know what you mean about the difference in treatment. Andy’s is excellent through to Slim who is wasting every-bodies time you would think.

Recently I had a pain in the leg my wife dialed 111 and we were asked to go to hospital to see…[Read more]

Hi Tina, have your friends had Myeloma? Listen to your body Tina it is its opinion that counts.

What does the Consultants say about your Back Pain?

Kindest regards – vasbyte

David

Hi Sindy, Welcome(?) to the Myeloma site.

You will find all the information you could ever want to know about Myeloma here and added into the mix you can talk to other suffers about their experiences so do not be shy if you have a question Ask.

Kindest regards – vasbyte

David

Hi Mich, Welcome (?) to our very exclusive club!

You sound as if you have got off to a flyer with treatment, well done, and a Specialist Consultant to boot. it all augers well for you I think.

I was diagnosed in July 2009 when I broke my neck getting out of bed! Myeloma had eaten my 4th vertebrae, my head is now held up with some great…[Read more]

And that Jean, is just the right attitude. Best of Luck to Michael and you of course. Slow and easy now is the way forward I am sure.

Kindest Regards – vasbyte

David

Hi Stuart, You know you are probably right.

I have used Norton since it first started I think. I have never had any problems with it. However in November 2013 I upgraded and I had a few problems in doing so which rather threw me at the time. However this new Norton is a lot more aggressive and even has a deep cleaning program for the first…[Read more]

Hi Carol, I have been on bisphosphonates since 2009. I was on Paramidronate but recently changed to the 3 month jab. I have been taken off bisphosphonates in January because I might have to have a coupled of teeth extracted in May. If I do I will not go back on it until August.

Everybody reacts to drugs differently but we all worry about…[Read more]

I will ty and get the name of the paper I think it was a red top national but I am not sure. I agree with you about SAGA. In my opinion the same has happened to AGE UK. My wife used to work for them as a voluntary Insurance Adviser. They got rid of all the volunteers. I rang then the other day with a pension quirey and the guy who answered…[Read more]

Well I could understand that if it was when I was coming back after say 10 days. But this actually happens when I am trying to sign in. It may well be the cookie is not recognised by all the other pages and consequently when I click on one page I am not signed in but when I change the page to another I am signed. If that make sense.

Cheers -…[Read more]