Hi Izzie

Someone else not sleeping! And I can’t even blame it on Dex! Like Andy, I find the balance between pain killers and feeling zonked during the day, and then awake at night, a hard one to find.

I am so pleased to hear the SCT did its magic for you. It is funny, some Consultants don’t like to use the word “remission”, but that must be…[Read more]

Hi Mary

We have lovely nurses on this site Ellen and Maggie,the number is at the top of the page plus it’s free,talk to them,they can send you booklet plus give you lots of information.

When someone is first diagnosed,it’s very hard to take in all the information,I had never heard of Myeloma,try not to go looking on the net until you can have…[Read more]

Thank you all for your condolences

Although expected it still seems so unreal.at the moment I am ok as I have said earlier I have no regrets,it’s a comfort to me that Slim lived and died just the way he wanted to,many people specially in death,do not get the death they wanted,plus many things are left unsaid.

Slim wanted a non religious…[Read more]

Dear Susie
I think myeloma x1 has zometa/zolendric acid iv/bisphosphonate within its protocol .You may wish to look on this website about the treatment of plasmacytoma and in the relevant discussion forum .
Dear Karen ,Likewise i suspected that you have entered the grey zone(sm or mm?) like me . your title confusing journey thread reflects the…[Read more]

Dear Eve

Deeply saddened to hear the news of Slims passing thinking of you at this sad time

Love Polly xx

Hi Susie,
I am sorry to hear your news but I am not surprised after reading your posts on kp’s thread ;(?NEW)vertebral fracture amd m spike>30 is highly suggestive of mm.not mgus or smoldering .I also should confirm that physios may order mri s but a radiologist is professionally responsible for the primary reporting of the mri and generates…[Read more]

Hi Stu

Sorry to have to welcome you here, especially as you are so young. However, as has lready been said, if your early treatment hits the MM hard before any bone or organ damage you stand a good chance of a full remission following treatment. Do you know what the long term treatment plan is for you.

Don’t be downhearted. I can tell you,…[Read more]

Dear Eve

I do send you my deepest sympathy that that which you had both expected and dreaded has happened. In spite of a valiant battle by both of you, Slim has finally been defeated by this dreadful MM.

I do hope, that as you plan his funeral service, it may come together as a celebration of a life well lived and of the strong bond between…[Read more]

Eve so shocked to hear of Slims passing. My thoughts are with you and your family at this sad time. You were Slim’s rock and I’m sure he was glad that he had you in his corner. My love to you all

Jean xx

Hello Martin

With the amount of damage to your back,I would expect you to have been in sever pain and needing medication for it!!!

The consultants must have done a Skelton ex ray plus MRI,scan which show the damage,if it’s pain from that area ,there should be some relief as chemo does the job of removing cells,but if it’s the bones crumbling as…[Read more]

Hi Susie

It may be worth taking part in the antibiotic trial. If you did get the antibiotic it could stop you getting shingles or other complications of being on chemotherapy.

Best wishes, whatever you decide.

Mavis

Hi Angeline

I have to ask how long is a piece of string!!!instead of thinking how long will it last,think how long you are going to have your Dad.

People choose there own time and own way to die,embrace it and do all you can,it might sound a bit old fashioned ,these days we hide it away,in hospitals homes or hospice,I am not knocking it,it…[Read more]

Hi John

You do not give much info on your dad age treatment and so forth!!!!!
So it’s a bit hard to reply????

I can say when you have Myeloma you just want to get on with treatment,people react different to treatment even to the point of treatment being changed!!

Your dad asking for a month off means he is having problems find out what the…[Read more]

Hi David

Thank goodness for some good news at last!

Hold on in there.

Beast wishes. Mavis

Hi there,

I always think we are the key player in any decisions made about out treatment. Certainly if/when I relapse I shal try to get CDT again as it brought me into complete remission this time.

If you aren’t happy with what is being suggested and team are not willing to discuss things, you could always ask for a second opinion as several on…[Read more]

Hi Helen

Just to put another view! I was on CDT for six rounds. It wasn’t easy as I had a metallic taste that meant I only fancied strong flavoured food, my hair thinned, zi got shingles and spent one week in hospital with sickness, but having said that, I didn’t really find it too hard to cope with. It got me into complete remission in which…[Read more]

Hi Helen

What a lot to cope with. The Indurance thing is a real trial isn’t it. I can’t get insurance because of all my health issues. I take a chance when I go to Luxembourg, but it is different because we are at my daughter’s. Bit more problematic if you are “on your own”, as it were. One of my 50 – List for Life things is to get to Italy…[Read more]

Hi Susie,

I can see that the site of your plasmacytoma is very differently sited than mine. Mine was golf ball size and wrapped round one of my vertebrae, can’t remember if it was T10 or T12. The thing was it was also around the spinal cord so it was very dangerous when they removed it. However, I had a brilliant surgeon at a Leeds LGI and…[Read more]

Hi Andy

So pleased to catch up with your very encouraging news. So glad you ans Steph are able to celebrate in an appropriate way!!

Do hope you can plan another trip soon.

Very best wishes. Yes, every day is a gift!

Mavis