[Lolly]

Hello Debbie
My husband steve is also on the XL trial
The vorinstat also was stopped , with no notice
Very little information from hospital

We have never received s letter from the trial office

Steve really struggled when it was stopped , mentally he found it really difficult

Lorraine.

[Lolly]

Hi jan
Good to hear from you 🙂
Steve is on lenomide can’t spell it and vorinstat

His sensations come and go , and says it a cold feeling from deep within
Also I notice his voice is weak at certain times in the month

Did you read the article, in the mail on Sunday about mm

Are you taking drugs at the moment ?

Xxx

[Lolly]

Hi Vicki
So sorry to read your posts .. As others have said really hope Colin can come home soon..
Thinking of you both
Lolly xxx

[Lolly]

Hello All,

Just to say a massive thankyou for all your messages and advice about re applying. I did this and yesterday Steve's Blue Badge arrived. Steve had his SCT at Kings College Hospital on the 29th October and is home now 🙂

xxxxxxx

[Lolly]

Hi Jan & Eve, thanks so much for your reply.. We were told re pain, but just such a shock to see him in so much pain 🙁

And I think sometimes when your being told stuff, I cant always take it all in.. All such a rollercoaster for all..

xxxx

[Lolly]

Hi Graham,
My name is Lolly, my husband got dignosed in March this year. He took it at your stage re SCT. We start the injections this tues, and we are booked into Kings for harvest on the 30th Sept. Which hospital are you having your treatment at ?

Lolly x

[Lolly]

Hi Andy, thank you for your message. Did you do the trial? I wanted Steve to have a second option at The Royal Marsden, but he could not face the travelling when he was first diagnosed. Which hospital are you under?

Have you been on the drug Lenalidomide (Revlimid) ?

Lolly x

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