Sickness following cyclophosphamide - Vasculitis UK

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Sickness following cyclophosphamide

Bailey24 profile image
9 Replies

My daughter has just finished her 2nd dose of cyclophos & now 3 days later has been sick & feeling nauseous - is this common ? Anybody else experience this ?

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Bailey24 profile image
Bailey24
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9 Replies
mickt profile image
mickt

I think its a common thing,im coming up for my 4th lot of cyclo,the first time felt quesy but ok since then more tired than anything else.Have they not diven your daughter some anti sickness pills ,i got some given iv then some tablets to take home.?

Bailey24 profile image
Bailey24

Thanks for reply - have found out now that it does seem to be common side effect . Yes we have ondansetron first given IV & came home with some oral ones .

She is certainly very tired too.

vivdunstan profile image
vivdunstanVolunteer

I was very sick after my Cyclophosphamide infusions. They gave me Ondansetron for the day of the infusion and the day after, but no more each time. And the worst day for me sickness-wise was always 2 days after the infusion. I asked for more pills, but they wouldn't give me them. Several times I had injections in the bum of strong anti sickness medicine (once by my GP, once by a district nurse) to try to stop the vomiting. But even that didn't stop it. On one occasion I was sick 20 times over a 12 hour period. Glued to my bowl I was!

But maybe the medics will help your daughter more. She should tell her doctors how sick she is. They may offer to give her more anti nausea pills, which might help.

Good luck!

Bailey24 profile image
Bailey24

That sounds terrible - I wonder why the hospital didn't give any more ondansetron ? The sickness certainly seems to have hit her the same time as you - app 2 days after.

The hospital did give her ondansetron before treatment. & after but they didn't mention that it may have been needed a couple of days later.

We are back to hospital tomorrow for blood tests. & to discuss further plasma exchange so will discuss it then - I shall add it to my list of never ending questions !

Thanks for your reply. !

antony9500 profile image
antony9500

Same as above, luckily Giles has never felt sick - not sure why - tablet 2 hours before seems to work. He had funny stomach the other day took tablet felt better. Hospital has given Giles extras and always offer them when there

roobarb profile image
roobarb

Hi Bailey

I'm sorry to hear how much your daughter is suffering. How old is she? I finished a course of cyclo infusions last week & found that each time the after effects, such as fatigue & sickness, were a bit different. I think it partly depends how you are at the time of each infusion.

The rheumy adjusted the amount/type of steroids in the infusion each time, as this seemed to help with side effects. I was also given 2 big bottles of anti-sickness syrup to take home, as I cant take tablets. Fortunately I didn't need much of it in the end.

Do you have someone you can contact for advice in between infusions?

Bailey24 profile image
Bailey24

Hi thanks for the reply - my daughter is 13 & this us her 2 dose of cyclophosphamide / I have now found out that sickness is common but I didn't realise it would happen 3 to 4 days after treatment.

I now know to give anti- sickness more regular.

roobarb profile image
roobarb in reply toBailey24

Very best wishes for your daughter, Bailey. I thought she must be young if you were posting the questions. I think every one reacts slightly differently to treatment & I'm sure her age must play a part too. My thoughts are with you. X

AndrewT profile image
AndrewT

Dear Bailey24,

I was always given 'anti-sickness' medication, when I had this drug. I had it once a month, for a year, then once ever two months the year after. This was all some years back. Anyway hope you feel better soon Bailey.

Kind regards AndrewT

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