[EttaParticipant]

Hi Dia just listened to your song it's lovely and a great start to my slow morning.
Love Etta

[EttaParticipant]

Hi Georgie I too was feeling very low at the beginning of my treatment and lost all power in my legs for nearly 6 months.
I am back walking again not as fast or steady as I used to be I am 56 and felt very frustrated and wasn't able to cope for quite awhile then I was given the citrolapram and take one at night which I feel helps. Hope this helps your dad regards. Etta

[EttaParticipant]

Hi Karen firstly welcome a great site for any info you may need,
Every body is really friendly and all have different stories to tell.
So if there is any questions to ask your in the right place.
Regards Etta .

[EttaParticipant]

Hi firstly welcome sorry your husband is having a lot of pain. I to thought the worst when my arm and shoulder started aching,but I have started some physio and if it doesn't work they are going to unlock it with key hole surgery.
Try not to let it niggle at you I know my husband worry s about me hope you get an appointment soon.
Regards Etta .

[EttaParticipant]

Hi liz I went to Australia last dec 3 months after SCT my doc gave me a course of antibiotics just in case .
First flight slept most of it second one kept drinking water, stewardess were great gave me large bottles.
Just relax and enjoy love Etta ..

[EttaParticipant]

Hi Tina
I have also started on revlimid and aspirin on Monday and hoping for a long remission,I was told I will be on it as long as my bloods don't go low hope you have a long remission Etta ..

[EttaParticipant]

Hi Ali that's great news about your mum. I hope my news is the same I go on the 27 of this month for my 100 day results.
Then off to Oz on the 7th dec ,hope you and your family are all ok and here's to a better year.
Love Etta x

[EttaParticipant]

Hi min lovely said I found a lot of my friends stopped calling when I told them about my illness.
It hurt at first but then you just get on.
last Christmas I thought my time was up and friends and neighbours just said they didn't want to visit in case they upset us.
But they didn't understand that hurt more.
Thanks for your post I'm sure this will help others.
Etta x

[EttaParticipant]

Hi Helen,

The nurse is going to send me some paperwork out for me to read through regarding it. She mentioned she would ring the trial research people and find out if required that I could start it when we got back so I will have to wait and see what happens there.

The only thing I find confusing is how they are certain I am going to be picked for the tablets before I go for my 100 day check up. She seemed certain that I would be! My major concern is taking an unknown drug when I'm at the other side of the world with no backup on hand like I would have at home.

I'm going to talk things through with my consultant when we see him early Nov anyway and see what he says, but in the end I have to do what's best for me.

Etta

[EttaParticipant]

Hi Ali,

I mentioned to them early in the year that I was going to Oz, and again last week when I went to see my consultant.
Nobody has mentioned that I have to get any more vaccinations though. In fact he even asked about the flu jab, and I told him that Blackpool (who did the stem cell treatment) mentioned not having live vaccines so he's going to check with them about it.

The only thing he was concerned about was my lack of wig so he told me I had to get one.
All done and sorted now, sporting a nice new hairstyle!

Maybe it's just down to different areas, unless its been a long while since your mum had any?
Hope a your mum is doing ok though.

Love
Etta

[EttaParticipant]

Hi Mavis
The nurse phoned this morning as I was a bit concerned about starting more treatment,not knowing side effects the tablets will have.my 100 days aren't up until 28 nov and then I go on holiday on the 7 th dec for five weeks so I don't want to start anything until I get back. The nurse said she will send some info to me as the side effects are similar to what I had on thadlimide so a lot to think about.
Etta x

[EttaParticipant]

So sorry to hear this sad news thinking of you god bless Etta

[EttaParticipant]

Hi Tom
Etta hear just saying hello this is the second day I have felt good since coming home.
Thanks for your reassurance and advice.
Love Etta

[EttaParticipant]

Yes tried a few times just seeing if this works.
Etta x

[EttaParticipant]

Thanks All, you've put our minds at rest a bit.

Helen: I think she may have a strong reaction to the Aciclovir as they affected her badly on the CDT last year and the consultant ended up taking her off them.

We stopped them after Monday and her stomach has settled down a lot, hardly any bile/wind etc so when we go tomorrow I'm going to ask for an alternative. I believe there is one (but it's more expensive apparently so…..) and we will see what happens.
At the end of the day, a lot of it is down to quality of life, and on them she doesn't have much throwing up all day. Let's see what Friday brings 🙂

otherwise, going great guns, still sleeping a fair bit more eating little and often, hardest bit is getting fluids in her as she was never a big drinker anyway. She keeps telling me off for badgering her but someone has too, after all it's my job!

Thanks again to everyone for the info.
Craig

[Author]

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