[TinaPParticipant]

Hi Mavis,
Thanks for replying. It was the allopurinol to blame. So I aam back on track with the Thaliomide. I'm on day 17 of the first 21 day course.

It seems a long way to go at the moment.

Back at hospital on Wednesday to see how things are going.

Thanks for your support

Love
Tina

[TinaPParticipant]

Hi Tom and Andy,

I have heard from other people on here about Dex, but had not experienced the lows I have felt over the last few days.

At least if I know there is light at the end of the tunnell, at least for a few days it will be worth it.

Thanks for your encouragement

Love
Tina

[TinaPParticipant]

Hi Mavis,

Yes SCT is the ultimate aim for me. I feel really tired and 'down' at the moment. Hope it improves when I take the dex again.

No change to hair either.

Take care

Tina

[TinaPParticipant]

Hi Alison,

Also on day 7 and feel really tired. Hope the energy comes back when I take the dex again.

Seems its the 'norm' to feel like this. At least we can chat to oneanother
about how we feel.

Take care

Tina

[TinaPParticipant]

Hi Wendy,

Thanks for the advice on laxatives. I have some already here, and took a dose last night.

Day 2 and I have no appetite. But still trying to drink loads.

Take care

Tina

[TinaPParticipant]

Hi Tom,

Thanks for your support, it seems a long road at the moment and I'm only on day 2!!

Thanks for the hugs.

Love
Tina

[TinaPParticipant]

Hi Eva,

Day 2 and the only side effect in loss of appetite. I feel very tired and have a sleep in the afternoon. But I have been doing that for a while now.

It is a bit daunting faced with all the tablets! My haemotologist gave me a spread sheet to use. I find it very helpful. Expect I will get used to it soon.

Take care

Tina

[TinaPParticipant]

Hello Eve,

Iam so very sorry to hear your sad news.
Thoughts and prayers are with you both.

[TinaPParticipant]

Hi Tony,

I am 63 and starting my treatment on Friday 20th. I have also been accepted on the Myeloma X1 trial.

You will be a couple of days ahead of me, so I will watch your progress on here. I will let you know how I get on too

Tina

[TinaPParticipant]

Hi Dai,

I have been offered a place on the Myelom X1 trial. The plan is I go for the intensive pathway. Starting with chemo for 3 cycles, then stem cell harvest. This will be followed be radiotherapy on my spine. Then I will have the SCT.

It all sounds very daunting, and I just want to get on with it. My back is causing me a lot of pain.

Tina

[TinaPParticipant]

Hi,

To quote Victor Meldrew – I don't believe it – been postponed again till 20th April! I know its only 2 days, but I feel the goal posts are moving all the time.
Sorry to moan – just want to get started and feel I'm fighting back.

Tina

[TinaPParticipant]

Yet another delay. Haematologist rang this morning to delay my appointment by another week! The clinical trials nurse is on holiday. I just want to get on with it.
Tina

[TinaPParticipant]

Hi Bridget,

I have got good pain relief. Co-codamol 30/500 also oramorph to top up.
So far I can only stand for a short while, but the pain subsides when I sit.I have a mobility scooter to use when shopping.

Take care

Tina

[TinaPParticipant]

We certainly are all different. I want to get started as I have a lesion in my lower spine, which is causing a lot of pain. If it gets much bigger, it could compress my spinal cord and cause all sorts of problems.

Love

Tina

[TinaPParticipant]

Hi
I'm due to start next week. We can keep each other 'company' on the journey. Its good to have this forum. I am down for stem cell transplant when the chemo is finished.
Keep us all updated.
Good Luck
Tina

[Author]

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