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]

Yes, seems ok now.

I take Dex k, 10mg per week on a Monday, with Revilimide daily. I used to take 20 mg but it was reduced to try to alleviate the side affects. I am normally up all Monday night – no sleep at all- and Tuesday can be patchy, some sleep during the day and some at night. The thing I feel really uncomfortable about is the under the skin crawlies.…[Read more]

Dexamethasone (steriod) is well know for its side affects. I used to take 20 mg on a Monday Morning. Results; could not sleep at all Monday night. I could climb mount Everest Tuesday – by myself, Wednesday/Thursday I would get grumpy Thursday night I was shattered, Friday Saturday and Sunday were near normal. then back to Dex on…[Read more]

Best of luck in your treatment Ange. Your feelings are just right, the road ahead can be up and down and bumpy at times but keep that attitude and you will be fine.

Kindest regards – Vasbyte

David

Best of luck Keith, Sorry to throw in a damper, I had 5 different types of mouth wash, most of them tasted fowl and I wanted to throw up when taking them. I had a real sore mouth for at least a week.

A cleaner, from Burma, came up with a good solution. she made me a build up milk shake with ice cream and fresh fruit – all made into a…[Read more]

My wife and I used Texting. We found it great for keeping in touch. We could say good night and good morning and lots of other silly little things people say to each other when they have had 50 great years together, whoops it was on 47 years when I had my SCT. Really recommend it.

Kind regards – vasbyte

David

Great results from the pair of you. I managed 1.8 on me first session and I had to have a second harvest to got the extra 200 needed for a SCT. To say I was relieved would be an understatement although SCT is not the be all and end all of treatment. Many people go on to enjoy a long and happy life without one – their are several on this…[Read more]

I have been on this site since 2009 and I have never heard of diffuse plane xanthoma being mentioned. Whether it is anything to actually do with Myeloma I am not sure.

Kindest regards – vasbyte

David

Hi Keith,

You are right that we are all at different levels and so the Knowledge is spread over the whole decease. You pick up the detail as you go on. The normal measurement is Paraprotiens unless you have one of the more specialised bone/ blood cancers when they talk about Bence Jones and Light Chains etc.. Personally I would not worry…[Read more]

Although I have only met one other person on here, with myeloma, from Somerset. I was told in 2009 that Somerset had a high incidence of Myeloma – unfortunately I cannot remember for the life of me where that came from. However, talking to my Doctor the other day he said he had 3 Myeloma suffers on his book. It is said that most Doctors may…[Read more]

How many pesky little blighters did you get?

Kind regards – vasbyte

Hi Keith, Bone pain during GCSF injections I have always considered a very good sign that you will get a harvest, so I hope all went well.

I had my SCT in Nov/Dec 2009, aged 66. I was told at the time I would only have one SCT because of my age. Never got to remission after it but a low plateau of 2.9 pp.

5 years later I am on Rivilimide,…[Read more]