[StanstanParticipant]

Hi Emma
I had my consultation yesterday to decide on the next course. They have given me three options. To come off the trials and go on Velcade at my local hospital. To go back on Thalidomide at a lower dose as that was bringing my para proteins down for a couple of cycles or Velcade twice a week in Southampton or I could be randomised straight to stem cell.
We have asked for time tho think about and discuss these options as I do not want to risk another PE with the Thalidomide.
How is your Mum now?

Love charlie:-0

[StanstanParticipant]

Hi Dai

I have been trying to reply to you but this new computer is so confusing.
I was fine until they put the Thalidomide up from 100 to 150. I took this for two days and then collapsed one morning – rushed to the hospital, collapsed again, resucitated, then kept in hospital. Taken off Thalidomide, which they said caused it and my doctor in St Mary's – on the Island said that Thalidomide should not be more than 50mg. I have had a history of PE after a motorbike accident and an operation on my leg. I had a PE twice after that in 2001.

My doctor in Southampton where I am on the trials says I may go on Thalidomide again as my course is randomly picked. I am dreading that, if this causes PE's. At the time I was on CTD. At the moment, I am on absolutely nothing which is wonderful. I have had a bone marrow biopsy last Thursday and on 3rd January I shall have my next randomisation depending on the bone marrow results.

There is not a point in the treatment if the PE kills you first. I am glad, at the moment to be alive.

Dai – hope you are OK – this is all so confusing isn't it.

Love Charlie >:-(

[StanstanParticipant]

Hi Dai

I cannot get back onto our discussion with this new computer. I had a PE and DVT in 2001 after an operation on my leg following a motorbike accident. I told the hospital this so they wre aware. I was then put on Clexane 40mg along with CDT. This was fine for a few months. then they decided to up the Thalidomide from 100 to 150 mg. I took this for 2 days and collapsed in the morning with a PE. I came round and when in A & E, I collapsed again, they had to send the crash team to revivie me.

Since then, while in my local hospital, they took me off all drugs apart from the Clexane. They decided it was the Thalidomide that caused the PE as it thickens the blood and have taken me off it completely..
They have now put me on 120mg Clexane.

I was told that I will not be going back on Thalidomide. They have just done a bone marrow biopsy in Southampton and on 3rd January they will decide what to do next. All I am on at the moment is the Clexane.

See what happens next. How are you doing? What have they decided with you?

Love Charlie

[StanstanParticipant]

Hi Emma

So sorry I have taken so long to reply, been having trouble with the computer.
So sorry to hear about your poor Mum, it must be dreadful for you and her.
It sounds really similar, I just went funny and collapsed. They have taken me off Thalidomide completely, in fact, I am off everything until January but am having a bone marrow biopsy this Thursday to see what is happening.

They sais that they will not put me back on Thalidomide as I am prone to PE's after I had a motorbike accident in 2001. (Mid life crisis). By coincidence, I was dianosed when I was 64.

How is your Mum now? What have they decided? Hope you are both OK.

Love Charlie:-S

[StanstanParticipant]

Hi Phil

It must have been so traumatic for you all. Living with Myeloma is enough on it's own, it must ave been a dreadful period. I found losing my Mum the most dreadful thing. How did your wife cope with all this?
I have started using a stress release CD which is quite helpful but I suppose we just have to accept it all and get on with it.
How are you and your wife now Phil? After coping with so much?

Love Mary & Charlie:-S

[StanstanParticipant]

Hi Eve and everyone – I'm here! 🙂

Thanks so much for all your replies. It has been really helpful and as Tom says – stress is an individual thing. I just can't seem to think of it all logically at the moment – maybe in time. I found just screaming a little release and crying of course. I suppose there is a period of time during which you become used to the idea of living/dying with and of Myeloma. I think that the way people suffering grief just absolutely wail is much healthier than holding it all in which I tend to do.
I am trying to adopt a positive attitude but don't think I am at that stage yet.
Some of you have suffered far more than I have and you have all coped.
It is amazing what people can cope with and not crumble.
Thank you all for your help and UPWARD AND ONWARD!!!

Love Mary & Charlie x>:-)

[StanstanParticipant]

Hi Jean

Maybe we shall try counselling as this is a hard thing to get through on your own. Or maybe singing like Tom does. I don't think my dogs would be too pleased if I screamed at them.

When you are on chemo, do you go out as usual amongst people and hope for the best, wear a mask or just stay indoors away from everyone? I have only seen one gentleman at the hospital wearing a mask so just wondered what everyone else does.

Love Mary & Charlie

[StanstanParticipant]

Thanks Tom

The singing sounds cool. What is really hard are the steroids and the strange moods. You just want the normal person back. Hopefully when we are through this it may be nearly normal again.

Upwards & Onwards Singing.
Love Charlie & Mary 🙂

[StanstanParticipant]

Thanks Jean

I think if I went to counselling, I would cry all the way through it at the moment. A friend of mine swims and she says that helps. Maybe a massage would be good. Hope Frank's SCT goes well. Will you be near and able to visit? I think I shall try Reiki or reflexology. Anything that helps.

Love Mary >:-(

[StanstanParticipant]

Hi Eve

Sorry, I didn't realise you were supposed to go onto another thread. I shall try that, I did wonder. Nightmare, maybe I shall get it right next time. Thanks. I don't think I am thinking straight at the moment.
Love Mary & Charlie

[StanstanParticipant]

Hi Eve

Hope Velcade does not have side effects like the previous drugs. Charlie can't have Thalidomide now because of the clots/PE's and we have to decide whether to stay with the trials or have the treatment done on the Island (which would be much easier and less expensive).

Fingers crossed and everything else crosed that it all goes well this time.
Did Slim get any infections when he was on the treatment?

😀 Love Mary

[StanstanParticipant]

Hi Tom

Wish we were drug free now. Hope it happens soon. Can't wait.
We see what will happen tomorrow at Southampton, which direction they choose to take with Charlie next.

Upwards and onwards and a few glasses of wine! :-/

Love Mary

[StanstanParticipant]

Hi Vicki & Colin

When Colin had the infections, did he have the emergency antibiotics? They told us, that if Charlie feels unwell just get him to the hospital. Is this what you did?

We see the consultant tomorrow at Southampton to decide which way to go next. He can't have the Thalidomide because of the clots.

Will let you know. Fingers crossed.

Love Mary

[StanstanParticipant]

Hi Tom

We are fine at the moment as Charlie is not on any medication. We saw the consultant on the Island last week, he says he can treat us here but Southampton want to talk to Charlie to carry on with the trials, so we go there on Tuesday and decide what to do. Sounds like it will be Velcade now. Whatever that means.

It is hard trying to keep Charlie from doing anything, but he knows to take it easy. Thank goodness.
We would love to be somewhere hot, relaxing on the beach.
Hope you enjoyed your weekend away, can't wait until we can too.
Upwards and Onwards. :-S
Love Charlie & Mary

U

[StanstanParticipant]

Hi Vicki & Colin

It is so hard to be strong. I sometimes feel that I am crumbling. But – deep breath. Charlie is home from hospital at the moment. I worry more than when he was in. Keeping an eye on him all the time, making sure he does not do too much. Nightmare. I am not sure what he is and is not supposed to be doing. This is all so hard and a new experience that we all do not really want. He is off all treatment at the moment but, it will all start again next week. Upward and On ward as Tom says.

Love Mary x

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