Hi Sarah,

Sorry to have to welcome you and M to the forum but it is a great place for advice and support. My husband Phil was diagnosed with Myeloma at the age of 43 in May 2012. His first line of treatment included Velcade (in combination with dex and doxorubicin). A possible side effect of Velcade is peripheral neuropathy so please make sure…[Read more]

Hi carol,

That’s absolutely fantastic collection! Hope you don’t have to wait long for there return,
Can’t believe your still working! Good on you, kevs had a lot of bone damage and severe PN
And struggles to walk anywhere, so not working anymore.
Hope everything goes to plan very very soon!

Best wishes and a happy 2014!

Love liz & kev xx

Hi Tom

Enjoy your break which I’m sure you will, I was just thinking me & kev could do with some warm sun but kev can’t get any insurance any recommendations?

Happy new year Tom & Elaine

Love liz & kev xx

Hi Andy,

I see revlimid as come to an end, I hope the new treatment works for you and you and Steph continue enjoying your trips in 2014! I was wondering if there’s anyone on the forum also on this drug pomolidamide? Kev is on cycle 13 of revlimid and in the beginning had a rough ride with various side effects, he now seems to have settled down…[Read more]

Hi Andy

I use my iPad and for the life of me I can’t find the Edit button. I’m forever making mistakes. It may be looking me straight in the eye but ………

Hope new treatment goes well

Jean

Hi Andy,

Happy New Year to you and Steph. I hope the uncharted waters of Pomalidomide are kind to you and that side effects, if any, are minimal. Keep us posted (when the forum lets you!) and fingers crossed for a good result.

Megan

Hi Stuart,

Just to confuse the IT issues a bit more I had the same problem Andy mentioned about logging in on Friday, I was on a Mac using Firefox. I was trying to post on the Newcomers forum only to be told I wasn’t logged in but when I went to log in again I was already logged in but when I went back to the Newcomers forum I was logged out. I…[Read more]

Hi Dave
And thanks am sure we will.
That sun on the back of my fat neck is gonna be real good.

Tom onwards and upwards x

Hi Izzie
Well what can I say ??

I had my SCT in December 2009 and up until 2013 was in remission and drug free, so the first transplant gave me a long and drug free four years and for that am pleased.
But did I have off days ?? Yes I was weepy and yes my head was low, lower than I wanted it to be.
How did I do I cope ??? Well I fight the myeloma…[Read more]

Hi Christine

Glad that you are in full remission. Frank had SCT in March and is also (thank God) in full remission. Had a PET scan as well and no signs of cancer. Mind you ha has had a cold now XOR about 4 weeks but no temp. I asked his consultant why he was not offered maintenance and she said that it is only offered to,people on trials. We are…[Read more]

Hi Michele
Dont worry about it being in “Stereo” as i can only hear from one ear ha ha.

Thank you and we will, you do right working your holls that way its best you can book well in advance enjoy.

Love Tom Onwards and Upwards x

Morning San
Am sure you know Fun is my Middle name so am sure its gonna be great Thanks.
I just need you all to behave while am away,I know most of you will but am sue we have some nawty ones that will misbehave while am away ha ha.

Catcha soon

Love Tom Onwards and Upwards xxx

It’s not a problem Chris and am sure it will work out well and I wish you luck I. Your decision whatever it is.

As for the myeloma we knew it would come back it’s just a when and how, am blessed with having no bone damage (that we know of) so that’s a blessing and as always it’s onwards and upwards.

Love Tom xx

Hi Dick and Carol

Well it was few weeks I was offline packing moving then unpacking, hated not getting on here as I missed you all 🙂

The young bride and I can’t wait as we are really ready for it bit of sun on me bald head will do us both the worked of good and get us ready for the next run of drugs.

Take care and stay well you all.

Tom…[Read more]

Hi Carol

Hey a well done you and your stem cells that’s the best I have heard of 😉
I collected enough for two in 3/4 hours but they put them in three bags so they gave me them all back so have none in reserve :-/ .

Am sure whatever you wear they will ask q good luck and hope your cells are not in the freezer for long.

Love Tom onwards and…[Read more]

Hi Chris

Well done on the remission am pleased for you.
As for the Maintanance regime I was never asked if I wanted to go on it so am not sure what I would have done to be fair.

But I gad my SCT in December 2009 and I gave had four years remission drug free which was great for us all sorry to say the myeloma has become active again, but four…[Read more]

Hello Izzie,

Many people refer to the Myeloma journey as being on a roller coaster and I have found this to be true. It is my husband Phil who has Myeloma, he was diagnosed in May 2012 and after six cycles of dex-dox-velcade he had a SCT in December 2012. There have been many ups and downs along the way but one thing I found helped while he was…[Read more]

Hi Maureen

Glad that Ian is feeling well enough to go out tonight. Hope you both have a fantastic night. I am nipping repund to one of our sons of a couple of hours. Frank is loaded with the cold and insists I go. Hacpve a happy and healthy 2014

Love Jean x