[StanstanParticipant]

I have just told Charlie what you said and we are looking forward to the good times, as you say, just got to get through the bad. Thankk goodness you are there – an inspiration. 😀
Love charlie & Mary

[StanstanParticipant]

Thanks os much Tom.
Charlie is out of hospital now, I just hope he stays here for a while. We are so trying but it is so hard but Upwards & Onwards.
Just need to be like you.

Love Mary x

[StanstanParticipant]

Hi Nicola

Did the treatment cause the atrial fibrillation or was it there before?
They say we are staying on trials but I do not want to do so if the drugs are going to have such a dreadful affect that he dies sooner. I really don't know what to think at the moment. Charlie has been off the drugs now for 2 weeks, since he has been in hospital after collapsing and he is back to normal. The Charlie I know. It is so hard to deal with. Strength – Upwards & Onwards I hope.

Love Mary

[StanstanParticipant]

Hi Tom

Roll on remission!!!! Upwards & Onwards. :-/

Love Mary

[StanstanParticipant]

Hi Mike

What is Velcade? They are thinking of that now. Isn't it all so confusing?

Love Mary

[StanstanParticipant]

Hi Mike

They have now decided that it is an irregular heartbeat, not an embolism that has caused all this. Nightmare! The cardiologist is going to check this out, maybe in hospital but maybe as an outpatient. What do I do if it happens again at home? Will he be able to stay on the trials?

I am so confused.

Love Mary

[StanstanParticipant]

Thanks Michele

They are now talking about Revamid instead of Thalidomide, apparently it was too uch Thalidomide – 150 and this has caused the PE's. It is all so confusing. Charlie has been off all the drugs for a week now and it is wonderful, he is back to normal. I know it is all going to start again, they are talking about either 3 or 5 week cycles. They just can't find out why he collapsed and had to be resucitated – they don't think it was his heart but are doing tests to see.

As Tom says – Upwards & Onwards and many deep breaths.

Love Mary :-S

[StanstanParticipant]

Hi Mike

They have just started talking to eachothe,the consultant in Southampton and the consultant at St Mary's on the Island. They are thinking about Revlamid instead of Thalidomide. There is an option of 3 or 5 week cycles. They are not sure why Charlie collapsed twice and are checking his heart. They feel the Thalidomide may have caused the PE's but as they can only find 2 little ones, are perplexed. This is trauma, I wish it was all sorted out.
Deep breath – I think he is going to be in hospital for ever. He is so normal now he is off all the pills at the moment, it is like having the old Charlie back but I know it will not last.

Love Mary

[StanstanParticipant]

Hi Tom.

Trying to become incredibly positive but it is not working at the moment.

Charlie came home from hospital for one day, the next morning, he was having chest pains and I rushed him back in. They say the Thalidimide caused the PE but now he has something wrong with his pleuritic sacs. They have stopped the Thalidimide and are just giving him pain killers for the chest. Don't know what will happen now or even if he can stay on the Myeloma XI trials.

Deep breath and see what happens.

Upwards and Onwards.

Love Mary

[StanstanParticipant]

Hi Mike
Thanks so much for replying. Charlie came home from hospital for one day, the next morning, he was having chest pains and I rushed him back in. They say the Thalidimide caused the PE but now he has something wrong with his pleuritic sacs. They have stopped the Thalidimide and are just giving him pain killers for the chest. Don't know what will happen now or even if he can stay on the Myeloma XI trials.

Thanks for keeping me informed, the hospital says nothing, specially at weekends.

Love Mary

[StanstanParticipant]

Hi Mike

They have decided not to give him Warfarin now but increase the Clexane dose. Is this good. Will the PE disperse as he is still having pains in the back? It is so dreadful not knowing what is best.
Love Mary:-S

[StanstanParticipant]

Thanks Mike
We have learnt more from you than the hospital. The cardiac technician has just put him on a 24 hour monitor. See what happens next. Thanks for informing us, it is good to know what is happening. He knew they were giving him injections & tablets but not what they were.

Love Mary:-)

[StanstanParticipant]

Hi Tom

Where do you get your positivity from? Can you pass some over?
They said today at the hospital that it was a pulmonary embolism and have put him on Warfarin for the rest of his life. I don't know what that does for the rest of it. Just keeping my fingers crossed and deep breathing.
So wish we were post SCT – how does everyone manage? There must be a hidden strength. They have sent him to another ward now until he sees the cardiologist and learns to inject the Warfarin. Nightmare!!
But – Upwards and Onwards – hopefully. Thanks Tom.
Love Mary

[StanstanParticipant]

HI Phil

Can't wait for post SCT. Charlie was re-roofing the shed the night before he collapsed, maybe he was overdoing it. Thanks for the hope Phil.

Fingers crossed.

Love Mary

[StanstanParticipant]

Thanks Eve. The inner strength seems to be evading me at the moment. I feel that I am going to burst. Maybe I shall try a pill tonight and see what happens. The doctor gave me 5 boxes and like you I am so not into pills but this is a new experience isn't it?
As Tom says, Upwards & Onwards – hopefully.

Love Mary

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