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Cyclophosphamide


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#1 Rod

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Posted 08 July 2007 - 06:36 PM

Dear All,
I have been diagnosed with systemic scleroderma for about three months now,
although I have had the symptoms for about 8 months.
The disease has rapidly fibrosed my lungs (interstitial lung disease) and is causing
pulmonary hypertension (PHT).
My specialist is keen to try me on cyclophosphamide and I was wondering if any
of this forum members have had this treatment and what I can expect.

Look to your responses
Rod

Australian, Male, 54 years old

#2 peanut

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Posted 08 July 2007 - 10:36 PM

Hi Rod,
Welcome to the forum. I also have ILD and PH. Would you be taking it orally or by IV? I did 6 months 1/month of IV at 1 gram almost a year ago and found it very useful in slowing the progression. I was fortunate in that I didn't suffer many side effects - hair loss, nausea. It is very hard on your body and progressively so with each treatment so be sure to give time to care for yourself... and drink lots of water.

It is good that you're seeking information. Read up on it. Since we are all a little different, symptomatically, make a decision that's best for you and your body.

Take care,

peanut

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my HMO makes me wear a helmet...

#3 jefa

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Posted 08 July 2007 - 11:26 PM

Welcome to the ISN Sclero Forums, Rod. I am so glad you found us and have started posting, but sorry it is because of your diagnosis of systemic sclerosis with lung complications. This is a great spot for information and support and there are many forum members who suffer similar problems who will be happy to share their experiences with you. I have a couple of links for you: the Cytoxan ® (cyclophosphamide) and Revimmune on the Scleroderma Clinical Trials page and also the LUNG (PULMONARY) page, which should make a good starting point for further reading.

When you get a chance, I hope you will tell us something about yourself in the Getting to Know You thread at the top of the page.


Warm wishes,
Jefa

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#4 adensmore

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Posted 09 July 2007 - 03:03 AM

I've my taking IV Cytoxan for about 8 months. My lung disease hasn't progressed, and in general I feel like I have more energy for about 2 weeks out of a month. I would recommend it. Stay very hydrated for about a week before and a week after the chemo. I take Zofran for the nausea and have no problems at all.

Warm wishes,
April in NC

#5 WestCoast1

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Posted 09 July 2007 - 03:11 AM

Welcome Rod,
I am truley sorry to hear about your Scleroderma diagnosis and the ILD with PHT. It looks like you are getting some great links and stories about other's experiences. Stay strong and keep posting. Everyone here has lots of great info and support to offer.
*WestCoast*

********

#6 LisaBulman

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Posted 09 July 2007 - 05:35 AM

Hi Rod,
I am so sorry about your recent diagnosis. I too have ILD and did a bout with chemo last year. So far my lungs have stayed the same. I had the IV cytoxan once a month for five months. I was supposed to do six months but my liver just couldn't handle it. I am very glad that I went through it as I believe it has helped but I did suffer from side effects, hair loss, nausea etc...

Please let us know what you decide to do.

Hugs,
Lisa
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#7 nan

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Posted 09 July 2007 - 09:23 AM

Rod,
Welcome to the forum! I am so sorry you are posting here due to your recent diagnosis and lung complications. At this point I don't have lung issues. I send good vibes your way.
Nan

#8 janey

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Posted 09 July 2007 - 09:59 AM

Rod,
Welcome to the forums! Sorry about your diagnosis with SSc. It looks like the doctors caught it fast which is quite unusual. I, too have SSc with lung involvement (ILD and PAH). Jefa gave you a couple of great links. You'll find that both oral and IV cytoxan have been proven to be beneficial for SSc lung. Unfortunately, for me - I was only on oral cytoxan for 3 weeks before I got seriously ill and had to stop it. I'm now on Cellcept and have been for 4 months. My pulmonary function test last week showed improvement, so... just to know that if the cytoxan doesn't work for you, there are other alternatives.

Good luck! Please keep us up on what's going on with you and how the cytoxam works for you. Many people have benefited greatly from it.

big Hugs,
Janey Willis
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#9 Sweet

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Posted 09 July 2007 - 02:52 PM

Hi Rod,

Welcome to the Sclero Forums. I'm really glad you found us, but sorry it's due to your recent diagnosis.

Carrie gave you a great link, I hope it is helpful to you. I look forward to knowing you better.
Warm and gentle hugs,

Pamela
ISN Support Specialist
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#10 Vee

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Posted 09 July 2007 - 03:25 PM

Hi Rod,

I also belong to the ILD club. I was on oral cyclophosphimide over a year ago for about 5 months. I switched doctor's at the end of treatment and was pulled off of it one month early, but I do think that it has helped in the long run. I didn't suffer any ill side effects from it, except in the first couple of weeks I had waves of nausea, which went away, and by the 5th month I was actually feeling pretty good. My last PFT was 6% better than the previous year, and my sclero seems to be at a stand still.
If you take the oral type, just make sure that you dring tons of water. I was downing 1 to 1-1/2 gallons a day. It was hard but it is possible.

Good luck in your search.
Happy people don't have the best of everything, they just make the best of everything they have!

Warm and Happy to you! Vee

#11 Rod

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Posted 09 July 2007 - 04:11 PM

Dear All,
Thank you for your comments, advise and best wishes.
Dealing with pain and restricted movement is one thing but not
being able to breathe is another. I have empathy for all who are in
the same situation.
Not withstanding the risks I think I will embark on this Cyclophosphamide therapy
in consultation with my specialist.
At this stage I am still coming to terms with the impact that this disease is having on my and my families lives.
In reading the forum posts I can see people have been living with Scleroderma for many years, it is a testament to their courage and determination to continue.
I hope I can be courageous as well.

Rod