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Effects of IV Cyclophosphamide Infusion


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#1 the only Y

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Posted 19 December 2008 - 07:39 PM

Hello....I am going to be starting IV cyclophosphamide infusion's in January, I will be going on a monthly basis. I was wondering what types of side effects anyone has had and how long you felt bad for?

Thanks - Yvonne


Searching for HOPE.......

#2 Snowbird

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Posted 20 December 2008 - 04:55 PM

Hi

Sorry I can't help with your question...but I do want to wish you good luck with your treatments.
Sending good wishes your way!

#3 pieski

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Posted 21 December 2008 - 05:58 AM

Hi,
I did the IV cyclophosphamide for 9 months. If yours is done the same way you will get lasix at the end. If you don't live close, stay at the office for a while, you will have to pee.....A LOT!
I had mine on Thursday mornings, would go to work Thursday afternoons and be fine. By late Thursday night I would start feeling cruddy. I spent all of Friday in bed, zofran was my friend! After the first time, my family knew to just leave me alone. Saturday I would start to feel better, and by Sunday I was fine again.
I didn't lose my hair, although it did thin out a bit, and as far as I know there have been no ill effects.
Good luck to you.


~ Teresa~

#4 kellyA

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Posted 22 December 2008 - 04:31 AM

I went monthly for a year, it was fine, the first day I felt fine, the second day ok, and by my third day I would stay in bed all day and the next fine, I tried to schedule them on thursdays so I wouldnt miss to much work, my hair thinned a little, (I had very thick hair) so it was hard to tell. Take the zofran as prescribed.

Good luck.

#5 aniwallar

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Posted 22 December 2008 - 04:12 PM

Dear Yvonne:

I have heard a lot about IV cyclophosphamide. Why were you prescribed that? How long do you have to have it?
I wish you the best with this treatment.

Stay warm,

Ani



#6 the only Y

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Posted 25 December 2008 - 06:00 PM

Hi Ani!
I have the systemic, possibly diffuse Scleroderma and my M.D.'s feel that @ this stage cyclophosphamide will be the best treatment for me. My Pulmonary Fibrosis is in the early stages, however I am on O2 due to dropping oxygen levels with activity and shortness of breath, which could be related to early Pulmonary Hypertension, they are not sure yet.... I will be getting the infusions once monthly for about 6 months. Thanks for your wishes, I will need them I am sure.

Yvonne -


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#7 the only Y

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Posted 25 December 2008 - 06:02 PM


To All - Thanks for all the warm wishes.....I appreciate them and will keep you posted. :rolleyes:

Yvonne
Searching for HOPE.......

#8 ashu

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Posted 26 December 2008 - 02:02 AM

Hello,

My daughter who is 12 years old is planning to go for I.V. cyclophosphamide. She is not responding to other medication. Her disease is progressing. I am wishing you speedy recovery.

Dr. Damayanti
M/o ashu



#9 Sweet

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Posted 26 December 2008 - 07:16 AM

Hi Yvonne,

I wish you the best in your treatments. I don't personally have any experience with cyclophosphamide but I do know many on the board do, so I'm sure they will chime in. I provided you with a link that might help get you started.

The best to you!


Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#10 ecogirl

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Posted 30 December 2008 - 12:26 PM

I did IV cyclophosphamide once monthly for 5 treatments. I didn't do the sixth because of the side effects which were just pretty bad vomiting and fatigue. The day after treatment was the worst and each day got better but I was sick for 3 to 4 after each treatment. HOWEVER it was TOTALLY WORTH IT. I had extremely rapidly progressing skin disease and cyclophosphamide made it go away. I did lose about 20 to 25 pounds and looked sick but my hair didn't fall out. So not to scare anyone out of it - if your disease is progressing and your doctor recommends it, I would do it. Just make sure to have good anti-emetics handy. Zofran is the best.

Best wishes!