Hi Val

It’s such a hard question to answer, because it all depends on how your husband reacts to his ongoing chemotherapy, whether he needs to change drugs, whether he will be going through a stem cell transplant and whether he has any infections/colds which will all affect his recovery period. It really does vary tremendously from patient to…[Read more]

Hi Val

It’s such a hard question to answer, because it all depends on how your husband reacts to his ongoing chemotherapy, whether he needs to change drugs, whether he will be going through a stem cell transplant and whether he has any infections/colds which will all affect his recovery period. It really does vary tremendously from patient to…[Read more]

Hi Andy

That’s wonderful news for you Andy. You must be so pleased to see your myeloma levels reduce to their lowest levels since 2011. Is this usual with Pomalidomide, i.e. does it take a long period to show results and can you expect your levels to drop even further?

Kind regards
Jan

Hi,

When I was diagnosed with myeloma in 2010, my kids were aged 17 and 19. Both were taking their mock exams, so we were concerned about how the news would affect their studies and their lives. Being a bit older than your children, they did ask a number of questions and although you try to be honest, upbeat and positive, you forget they pick…[Read more]

Hi Amanda

I remember very clearly finishing four cycles of CTD in 2010 and after some blood transfusions, feeling much better. Coming off the drugs meant my energy levels returned and I lost many of the side effects of nausea, constipation and muscle weakness. However, like you, I then began to worry about the next stage in the procedure of the…[Read more]

Thank you Richard,that was kind,

I often think about Dai,and others and people who have stopped posting,like Jo .

Deb Bones lost her fight just after Christmas as well,it’s a sad year all round for many of us,but we do live in hope that away to control Myeloma is coming,plus we have the knowledge that all the people on the trials helped

I am…[Read more]

Hi Rosie

I’m so sorry to read of the passing of your husband Chris. I know your children and family will be of great comfort to you and to help you at this terrible time. Such a lovely picture of your husband – the Glens of Antrim, know it well

God bless you and your lovely family

Jean x

I found they gave my husband the anti sickness pill to near his meal!!!!
If it’s taken half an hour before a meal it settles the gut,so that might be worth trying,and yes some hospitals keep you in until you can hold down your food,Slim just lied!!!! But that was Slim.

Try a piece of pineapple to clear the pallit ,drink anything you can,it’s hard,fizzy drinks helps,it’s just a matter of perseverance .

Hi

I am sorry to hear about your news,it’s not very nice when all hopes seem to fade,!

You must be absolutely shattered with all that’s been going on since last January,with hardly any time to take everything in,your experiences of hospitals is becoming more commen place,waiting hours just to be put on a drip,when your husband was so ill,it is…[Read more]

Hi Mavis glad to see you still in remission, you have to make the most of it. Get out as much as you can on that mobility scooter.
Re quality of life… Yes it is important and I understand what Dai felt, but even though I only got 14 months from mine, and had a terrible recovery, I’d still do sct again if it could keep me here longer. We will…[Read more]

Hi Andy
Thanks, I have cells saved for second sct but it’s not going to be an easy decision. I’m on the 2nd Dex night! No sign of sleep for me! Tomorrow will be exhausting. Finished the first week ok and feel well.. Bloods still iffy, risen neuts but dropped hb and platelets! Anyway not back for 3 weeks now.
I’ve spent the day making table…[Read more]

Hi Matt

When Frank applied for policy, he had to answer loads of questions. One they kept harping about was “are you on very strong pain killers”. He asked what they called strong. They never had an answer for that and as Frank was only taking paracetamol – they accepted that. He got the yearly policy and when they sent the renewal policy it had…[Read more]

Hi Matt

My husband has been in remission for over 2 years. We love cruising and we got the best deal from All Clear – a yearly policy. When we asked about cruising in the Caribbean – I can’t remember what it cost but I know it was astronomical – so we stay with in Europe. Hope someone comes along and can give you more info

Best wishes
Jean

Hi Rosie
So sorry to hear your sad news,it heart breaking if you are not expecting it to be so sudden,I had Time with Slim to prepare are selves for what was going to happen,you can never tell with Myeloma all it takes is an infection or pneumonia ,I nearly lost Slim at the very beginning with pneumonia,so we felt lucky to get another 3 years…[Read more]

Hi Angela and Graham

Move over Sir Bob. I really enjoyed that. Real good feel video. All looked if they were enjoying it.

Great well done
Jean x

P.s the drummer was brilliant

Hi Vikki
I’m on Pomalidomide now.. Possible sct ahead, nothing definite yet. Hope Colin continues well on the Velcade, I got just on 11 months with it, not as long as I had hoped, but nearly another year, I’m hoping this lasts longer.
Love Helen

hi Ali
Good to see you again and glad your mum is doing ok again, 2 months between appointments ..that would be nice!
I’m at the end of week 1 on Pomalidomide, so far so good! Dex is terrible but otherwise I’m feeling pretty normal, whatever that is!
The move won’t be until next year, got to get the wedding out of the way first.. Nearly all…[Read more]

Hi Maureen and Colin and Vikki
I hate this new web site!
I’m just signing in here! Just to prove I’m still around. I’ve tried to post stuff but the connection keeps crashing and I can’t be bothered to rewrite everything. ( hmmm sounding grumpy already and only just started the dex! look out world!)
No real news from me- I feel tired but have…[Read more]

Hi Jean
I tried a few times to reply to this post yesterday but see my reply is missing! I’ve posted a bit about my latest treatment plan and am feeling ok really. Hope you and Frank are keeping well
Love Helen