[TinaPParticipant]

I have been on Revlimid for 18 cycles as maintenance. 3 weeks taking 1 tablet at
night, then 1 week with no tablet.
Then after a blood test,I go and see my haematologist for the results.

I was allergic to the full dose of 10mg and came out in a horrible red raised
rash.

So my dose was halved and I take anti-histamine tabs 3 times a day throughout
the 4 weeks.

So far, no sign of PPs and my bloods are ok.

Tina

[TinaPParticipant]

I am so pleased for you.Its a great feeling to be told that
the PPs were undetectable. Hope it lasts for a very long time.
Love Tina

[TinaPParticipant]

Hi Mavis, I am back on the trial now. Doc gave me really strong anti histamine to get rid of the rash. By the end of the first week the rash had gone.

I have my week off next week so we will see if the rash returns. But if its
only for a week, I can cope with that each cycle.

Love
Tina

[TinaPParticipant]

I am having an operation on 29th Nov. The Maxofacial dr wants to smooth off
the rough surface of the exposed porous bone and try and draw skin over it and put a patch on it!

I am very pleased it will be done under general and not local.

I will let you know how it all goes.

Love
Tina

[TinaPParticipant]

Hi. Looks like we are both at the same point in our treatment on the MyelomaX1 trial.

I started on 10mg Revlimid 21 day cycle. 3 weeks on and one week off
But came out in a really bad rash.

When he changed me onto 5mg I thought all would me ok..
Oh no – rash came back.

Saw my haemotologist and he prescribed strong anti histamine. After the first week my rash, which covered my whole body had gone

I hope this helps.

Tina

[TinaPParticipant]

Hi David,

My taste buds are working, but I still have no saliva!!

This mskes eating anything dry very difficult.

I have not had hunger pangs since before CDT.

John gives me small portions. but a lot goes in the bin.

Thanks

Tina

[TinaPParticipant]

Mine has grown back much darker (I was blonde) with grey in it!!

[TinaPParticipant]

Hi.

I was randomised (Myeloma1X) after sct and full remission achieved.
I am taking Revlimid 5mg for 3 weeks out of 4.

I am on my second lot, and so far no problems.

The question I ask is, how will I know if my remision has been lengthened if nobody knows the time scale without the drugs?

Take care everyone

Tina

[TinaPParticipant]

Hi Mavis,

Yes, I had SCT in October and am in remission.

I have started on Revlimid 10mg as part of the Myeloma X1 trial.

Seeing consultant on Monday to see if a reduced dose of Rev ie 5mg would suit me and not bring on the rash.

Love
Tina x

[TinaPParticipant]

Hi Mavis,

Yes I have SCT in October.

I have had to come off the Rev for the time being till the rash has gone.
It has responded very well to the antihisimines and has almost gome.

I'm due back at hospital on Monday morning to see what my consultant says.
I don't want to come off the Myeloma X1 trial, but he says he could reduce the dose of Rev, on 10mg at moment.

I'll let you know how I get on

Love
Tina

[TinaPParticipant]

Hi.

The rash got worse, all over me, and itched like mad.

Phoned up the Myeloma nurse, and she said to come over and let my condultant see it.

Bear in mind the weather conditions! John had to dig the car out before we could go. at least the main roads were clear of snow.

The result is that I'm allergic to the Rev and have been put on antihisimines and cream.

Going back next Monday to see if he can put me on a smaller dose.
I would like to continue with the MyleomaX1 trial.

I'll let you know how it goes.

Take care

Love
Tina

[TinaPParticipant]

Has anyone suffered from itchy skin.

All I seemed to do last night was scratch!

If it is a side effect – then I shall have to put up with it.

Love

Tina

[TinaPParticipant]

Hi Helen,
Did you have any side effects from the Revlimid?

I start taking it tonight.

Love

Tina

[TinaPParticipant]

Thanks Sue.

I have to go for a sleep every afternoon at 3.00 and my husband (John) brings me a coffee up around 6.30 – 6.45. Then I can stay up and watch tv till about 9.30pm.

I'm glad to hear that some else sleeps too.

Thank you Sue.

Tina

[TinaPParticipant]

Thanks Tom,
Never been a fan of chewing gum, but I will get some and give it a go.

Tina

[Author]

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