[mapesumaParticipant]

Dear Pat,

How did David get on? I do hope it went easily for him, and that he is home with you now and recovers well from it.

We are recovering from colds/ chest infections. Paul’s treatment has been delayed for a week due to them, so he has another test on Friday.

Hope you and all your family have a nice Christmas.

Sue

[mapesumaParticipant]

Hi Pat,

Sorry to hear that David is poorly just now. I have read that the first dose of Daratumabab is the worst, so if he has tolerated it he should find the rest easier. I hope it works well for him.

Paul is currently on Pomalidamide and dex as his third line. Consultant is thinking of daratumabab for 4th, but says he has hopes that the pom will be good for the time being. Christmas has fallen in his week off so we have been lucky.

Hope all goes well for you and David, and that you have a lovely Christmas.

Sue x

[mapesumaParticipant]

Hi Teresa,
Thank you. Sounds like our pharmacy is a little out of it. I will ask them about glensoludex next time i go in.
Sue

[mapesumaParticipant]

Hi Pat,

You are right, it is difficult. Once it was diagnosed and they got the back pain sorted out, most of Paul’s problems have come from the treatment.

I hope David is doing well with it and that you are OK too.

Wishing you the best possible Christmas,

Sue x

[mapesumaParticipant]

Hi Pat,

They sound brilliant. We live in Wales. I will ask if our pharmacy can get them.

Paul is taking a 40mg dose. The 20 tablets he couldn’t manage. The liquid he gets is only 2mg per 10ml spoonful. It is really expensive and pharmacy is not happy about giving it out – every month the note seems to get lost and they give tablets which I have to get changed.

Thank you so much for helping.

Sue

[mapesumaParticipant]

Hi Pat, Thank you for you reply.

We are in the UK. I am wondering where you are based as I have not come across soluble tablets. Do you know the manufacturer. I think they will suit Paul much better if i can source them as the liquid he has is full of sweeteners and tastes sickly sweet with a really bitter after taste which lasts most of the day.

Paul does not drink coffee or anything containing caffeine on the day he takes the dex or in the afternoon or evening of the following day. The caffeine reacts with the steroid, enhancing the stimulus effect and he cannot sleep. If he avoids the coffee he sleeps almost normally.

He has found the best thing to take the bitter taste away is Sainsburys chilled apple and pear juice. Next best is pure apple juice – suggested by the hospital pharmacy.

Sue

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