Excellent news regarding Revlimid Jen, let's hope it continues down to cr and a plateau that will last for years. As I have noted here before, I met a woman at the Nottingham INFOday who has been on Revlimid for 5 coming on 6 years, it simply works for her with a minimum of side-effects.

I must say that after 3 years of Movicol and Micralax as…[Read more]

From 'Pat's Place' a blog from an American MM'er.

Pat?s Place: For Me, ?Watchful Waiting? Becomes ?Hopeful Waiting?

by Pat Killingsworth
I have written about the challenges and frustrations of ?watchful waiting? here in the past.

I believe this is one of the most challenging aspects of living with multiple myeloma?sometimes all we can do…[Read more]

Thank you Tom, Hopefully the good news will keep coming, we do dread the dreaded hospital visits every 8 weeks but come away feeling relieved and positive so long may it happen.
You all take care of yourselves and i thank you all again for your advice and support
Gina x

Hi Gina and Mum

Like all the others am pleased your Mum is Still holding back treatment 😀

And as for being tired :-/ tell me about it me I have fell asleep in the pub (and still sober he he) but my young bride Elaine now knows when I am getting tired and makes me go home/or stop what am doing (bless)

Yes its hard to sit back and wait…[Read more]

well David mine was on the 22nd November 1975 😀 now lets see three kids born?? :-/ names ??:-S you ask them and they will tell you its a erm Lee Craig no you Ha ha ye I still get mixed up with the three Sons Names and Grandkids ho ho Love them all (5) but even they know I get confused when I call them He he, Hey Ho am sure its just me 8-)…[Read more]

Hi Ali and Guy

Well am pleased Guy's problems are on the way to being resolved, the bone thing am not sure what if anything Guy is having to help with that? as Bridget says two drugs are used (that i know off) and the one I am having is the Zometa, and that in itself gives me no problems or side effects 😀

Please dont worry about throwing…[Read more]

Thank you to you all for your replies. I think my mum is just worrying a bit because she has always been so fit and active. She thinks she still should be. But you are right everything else is ok so we need to think positive. Thank you again for your advice, i am really grateful.
Gina x

Hi Gina the fact that there is no sign of anything in your mums bm is great , I think this is a more important marker than pp levels which can fluctuate Chest infections can leave you exhausted for ages and I think the power failures is very apt, I can now fall asleep at the drop of a hat during the day!! If the docs arent too worried at this…[Read more]

Hi Anne,

Is your husband on CDT (Cyclophosphamide – Dexamethasone – Thalidomide) or a similar cocktail? CDT seems to be the current frontline of attack. I did well on CDT but the much vaunted SCT was a failure after only 10 months.

I am back on Velcade now (with the dreaded Dex) and will complete my first cycle today (and then a week off…[Read more]

Hi Ali sorry to hear Guy is having such a tough time but hang in there There are various treatments to help with the bone damage, I have extensive bone damage everywhere except my left arm and left thigh They may give uy a drug called Parmidronate or Zometa which helps strengthen the bones and relieve pain , this can have an amazing effect quite…[Read more]

Welcome to the site,although not a nice place to be. The people on here are brilliant at giving support and advice. My mum has myeloma and has had it since 2009 she is 71. Its good to know there are people that understand and can help when advice is needed.
Gina x

Well Dai

What can I say :-/ Lord knows I wanted to say something but couldn't:-( I am so pleased that you Dai helped the likes of me in putting it across with feelings from our hearts, Lord how the tears seem to come easy 🙁

Love and many hugs

Tom xxx

Thank you all but it was for and about them, not me (if you see what I mean). I want a group hug and cuddles, I want to take their pain away… but I can't, so at least I can share a drop of humanity and try to tell them that I and we are always here… and when one of us drops away there is always, most unfortunately, a new group of wonderful,…[Read more]

Oh Dia

such beatiful words you can give a voice to what others think

Love Jo x

Welcome Ali and Guy

SO sorry you had to join this club it has been a great comfort to me as I am sure it will be to you when you are in the darkest places there is always someone with advise and comforting words I now its hared to find anyone in the big wide world that has heard of Myeloma that is why this site is so important

Be strong love jO 🙂

Hi Annika

Am pleased your Husband has coped ok with his line of treatment and just go with the flow, both of you rest when you need to and dont do too much, as for the steroid's My young bride Elaine says that I was OK with the effects 😎 or was she just too kind :-/

Good Luck on the treatment, mine went smooth (ish) and Like Kathleen's…[Read more]

hello annika

I had cdt treatment I was 61 I tolerated it pretty well except the emotional bits with the hated DEX I have had MM for 2.5 years now or that was when it was diagnosed I am sure I had it for quite a bit before that there are people in my clinic about your husbands age who are doing very well on the medication so hopefully he will be…[Read more]