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Anyone did Cyclophosphamide/cytoxan?

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15 years 10 months ago #1665 by Lorie85
Anyone did Cyclophosphamide/cytoxan? was created by Lorie85
I was given a choice between Chemo drug cytoxan and Spleenectomy. and i chose to take the chemo drug. so far I have seen a significant decrease in white blood cells (33k to 12 K) but still no platelet response last count on 12/03/10 is 3. Does anyone know how long this drug takes to work? or had any treatment experience with it?

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15 years 10 months ago #1699 by Fay2
Replied by Fay2 on topic Re:Anyone did Cyclophosphamide/cytoxan?
Hi Lorie.
Let me preface my response by saying we all respond differently to treatments.
I have tried a course of cytonan which did nothing for my platlets nor did I have any nasty side effects. This was approximately five years ago.

I had a spleenectomy approximately 25 years ago.

Hope this helps.
Best regards
Fay

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15 years 10 months ago #1701 by tofer
Replied by tofer on topic Re:Anyone did Cyclophosphamide/cytoxan?
I had cytoxan for chemotherapy. It didnt make any real changes in my platelet count either up or down. I was on it for 6 months 4 weeks on 2 weeks off. It really only caused an allergic reaction for me something that dosent happen normally to people.
I lost little hair... most of my reactions where caused by the steriods.

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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15 years 10 months ago #1734 by Sandi
Replied by Sandi on topic Re:Anyone did Cyclophosphamide/cytoxan?
Lorie:

What else have you tried? Maybe there are more than those two choices. I've rarely seen Cytoxin work for anyone.

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  • weirdjack
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15 years 10 months ago #1764 by weirdjack
Replied by weirdjack on topic Re:Anyone did Cyclophosphamide/cytoxan?

I was given a choice between Chemo drug cytoxan and Spleenectomy. and i chose to take the chemo drug.

You might want to choose "C" - Get another Hematologist's opinion.
There are a lot more ways to treat ITP than one drug or yank the spleen.
Be insistent! It's your life and health.
After 7 years of treatment and living with an average count of 35k, having an organ removed is still going to be my absolute last resort. I'm glad my Hematologist agrees!

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15 years 10 months ago #1788 by Lorie85
Replied by Lorie85 on topic Re:Anyone did Cyclophosphamide/cytoxan?
Well the next step for me is Azathioprine,but apparently it's a slow working drug so i'll have to wait a bit and see if i get a good response out of it, and by good i'm grateful for a count over 20 as i've been living the last two weeks at 2 and 3 respectively. I could get another dex pulse but I have a moon face already (lol) and the coming down off of it is a pain and it only lasts like a week in the safe levels.
So far I've gotten Solumedrol Pulse and 80mg prednisone, within 2 week down to 0. Then I got another solumedrol pulse and 80mg prednisone this time plateletts 2 weeks after were 17. Got dex pulse that lasted one week. Doctors told me I seem to be steroid resistant. Then I started Cytoxan 1 gram per week for 4 weeks which i finished last week Friday.
I really dont want any more chemo drugs, because of their adverse effects on fertility and i dont have any children yet. I have a CBC tommorow, I hope my counts look better at least over 10. Wish me Luck!

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