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Jane is a haematology nurse with extensive experience in stem cell and bone marrow...
I saw my Consultant after first cycle who said to just carrying on with same regime for 2nd cycle only when they gave me my prescription to take home , they had doubled the thalidomide. After 5 days I became really unwell, Consultant stopped thalidomide for5 days to give me a rest and then restart with just one tablet.
Anyone else had theirs increased on 2nd cycle
I did not have my thalidomide increased. With the consultant having said to continue with the same regime I would wonder if there were a mistake made.
Hi Eyes if the blue,
Welcome to the forum, although I’m sorry for the reason you had to post. I didn’t have my treatment dose increased but I have come across it with other people when the medical teams were looking to generate a greater response.
I would always advise speaking to your medical team to ask them what their strategy is as hopefully that will set your mind at ease. I’m really hoping you feel better on the reduced dose.
Wishing you all the very best
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Hi I’ve just finished my first cycle and I’ve been on 2 thalidomide a day since start. Touch wood I’ve had not problems with it but the dexs give me horrendous hiccups for hours it’s getting me down
Go back this Thursday for second cycle I’m hoping they go down. Hate injecting myself twice daily as well
That's so weird they've just done exactly the same thing to me!
Doubled my dose of thalidomide on the second cycle but no one told me. I just read it on the prescription to take 2 a day.
I'm still taking it at one a day until I speak to my consultant as I had lots of side effects on the first cycle and don't want to feel that bad again.
How strange that they didn't tell us!
My prescription says take one a.day but when I checked the dosage you have to take two to get the amount required
I've been on two since start for some reason. My levels were going down but suddenly started rising again which is a bit concerning
I suppose everyone is different and it's taylored for individual
Round 1 I was on 1 a day first two weeks followed by 2 a day 2nd fortnight. Just started round 2 and it’s gone to 4 a day all through the next four weeks.
Well the 2 day must be working my paraprotein levels gone from high to a 1 I was told on friday.
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