[jmsmythParticipant]

Hi Nicola

Frank takes Dex on the Friday and finishes on Monday. He feels terrible when taking it but its when he stops that he feels so bad. Everyone is different – Keith feels unwell for 2-3 days, Franks stopped on Monday and its just today that he says he feels human again. While withdrawing from Dex he feels wobbly, and has to be careful when getting up from a chair. He says that it's like an alien has taken over his body and he has no control over his own body. Every month he looses about 7 lbs but he soon puts it back on again. Nicola I know how hard it is too watch someone you love suffer like this (there has been many occasions when Frank has wanted to stop) but reading posts of what people have gone gone through and they are so much better no. Please give your dad my best and tell him to hang in there – there is light at the end of the tunnel.

Take care
Love Jean x

[jmsmythParticipant]

Hi Nicola

Sorry your dad is having such a hard time with the Dex. My hubby is on 5th cycle and was having such a bad time that the consultant halved the dose. It seemed to help a bit. I know it's hard, but I think it's Dai that says "whatever it takes". Hope your dad starts to feel better soon

Take care
Love Jean xx

[jmsmythParticipant]

Hi Mike

My husband was diagnosed with SMM in Sept 2006. Straight away consultant started him on Zometa once a month for 2 years. She then stopped it. Years later I asked her if Frank would go back on it and she said that as he was still smouldering he would not have it as thinking had changed about giving it to SMM patients. He is now back on it as treatment started in June.i wondered if giving him Zometa at beginning was the reason he smouldered for 6 years.

Regards
Jean

[jmsmythParticipant]

Hi Mari

Poor Steve is having a rough ride. I hope things start to improve soon. It must be awful for you watching him go through this. Try and keep your spirits up. Will be thinking of you both
Love Jean x

[jmsmythParticipant]

Hi Andy and Steph

Just what the doctor ordered. Hope you have a brilliant time – you both deserve it
Love Jean x

[jmsmythParticipant]

Sarah what brilliant news! It is so heartening to read posts like this. Long may the remission last. He has had a rough road and Henry as they say here in Norn Iron )northern Ireland to people on the mainland ) "good on ye"

Love Jean x

[jmsmythParticipant]

Lovely Min. Thank you
Jean

[jmsmythParticipant]

Hi Sarah Jane

Sorry you have had to join us but you are in the right place. My husband had SMM for 6 years and has just started treatment June. It is a roller coaster journey and I know where you are coming from about getting tested. Frank went every 3 months and for most of that I was able to put it to the back of my mind and get on with our lives, but 2 weeks before appointment I was up to high doe. Always thought "this is it". But it didn't happen for 6 years. They gave Frank MRI's whenever he complained of pain so they do keep a good eye on you. I won't tell you not to worry because you will but try to get on with your life, my son always tells me that there is no point in worrying about what might happen, wait until you have a definate to worry about. Eve is right about the under 50's. Go on to that area and I know you can email Scottie and I think the other one is Phil – not sure.

Hope you smoulder for many years and even if you join the under 50's still pop on here – there is a wealth of knowledgeable people.
Take care
Jean

[jmsmythParticipant]

Hi Vikki and Colin so glad to hear that Colin is getting plexifor (!!) I am following your journey closely as Frank is a couple of months behind Colin. Do keep us posted every step (if you are up to it) it is so helpful to read of other peoples experiences

Love, best wishes and all the luck in the world
Love Jean x

[jmsmythParticipant]

Dear Gill

I am so so sorry to hear that Stephen has gone. My deepest sympathy and love goes to you and your family. I don't know any words that will comfort you at this terrible time. I have followed Stephen journey through this awful disease and was with you in his ups and downs. Gill I wish you strength and the love of your family to get you through this terrible time. I know you have lovely memories of your life together – your family, dogs and France. Nothing anyone says will stop the wish that Stephen was still here, but he is no longer in pain. Take strength from all those around you and all your many friends on the forum. My love to,you and your family

Love Jean xx

[jmsmythParticipant]

Dear Gill
I like everyone else is devastated for what you and Stephen are going through. My thoughts are with you bothe. God bless

Love jean xx

[jmsmythParticipant]

Hey Tom there were two lots of spam this morning – oh boy I'm on the ball!! When I read it I had no idea what to do about it.
Love Jean x

[jmsmythParticipant]

Tina I wish you all the luck in the world. Hope it all goes well. 🙂

Live jean xx

[jmsmythParticipant]

Brilliant brilliant news David. Well done. Keep,up the good news

Love Jean x

[jmsmythParticipant]

Hi Vickie
Sorry to hear that things are no better. I know it can be difficult with some consultants, they seem to be "the all powerful" but they are human. So as you say be assertive Vickie, have a written list of questions so there is nothing left out. When we visit consultant I take a little recorder to record the consult, as I have the worse memory in the world.

Will be thinking of you both on Thirsday and hope you get something positive out of it. Everything will be crossed
Best wishes
Jean x

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