Cyclophosphamide any experiences?

[Domrolle]

Hi I have posted a few times about my daughter (6) who has been diagnosed with systemic scleroderma. She has been taking mmf for the last 6 months but now the professor working with her is suggesting she has cyclophosphamide once a month for 6 months. I just wondered if anyone had any experiences of this drug?

[CLSH]

Hi,

I had cyclophosphamide infusions around six months after being diagnosed.

It is a very strong drug and was described to me as a weak chemotherapy drug. Such after taking I felt sick and was wiped out for a few days. I’d be asking your daughters consultant about the side effects and what the alternative treatments are. I was also told by the specialist team that you can only be given so much in your lifetime.

Hope this helps.

Caroline

[Domrolle in reply to CLSH]

Thank you. Yes they have explained all the side affects but they have assured us that the impact should outweigh the side effects!! Very scary!

[CLSH in reply to Domrolle]

Yes it is, but if it works worth the worry.

[Rescue5]

I had cyclophosphamide infusions several months ago.

I experienced a little nausea two or three days following each of the six infusions, though not too serious. I had six infusions and the nausea was most noticeable after the first couple then eased for the remainder.

I think I was fortunate I tolerated it quite well.

These medications affect different people in different ways!

Of course I am an adult and something like ten times your daughter's age!

Therefore perhaps worthy of consideration - how valid to compare a child with an adult?

Of course regular blood testing is carried out along the way to test for any untoward outcomes.

Hope this helps and things go well for your daughter and family.

Kind regards

[Domrolle in reply to Rescue5]

Thank you for your reply. Yes hopefully she will react well to it.