Jump to content

Hang onto your hat: Sclero Forums Upgrade May 14-21, 2017!! The Forums will be offline for up to 4 days, and then will return with an entirely new look and feel.



  • Please log in to reply
4 replies to this topic

#1 kellyA


    Senior Bronze Member

  • Members
  • PipPipPip
  • 73 posts

Posted 07 March 2008 - 09:14 AM

I just finished my 8th cytoxan treatment, 1 more to go, althought I noticed im out of breath alot more lately (my dr did a scan and said the intersittal lung disease stayed the same as when I started) I was rather depressed to hear that, she said she was hoping to keep it at bay, I thought the treatments would get rid of it. This last treatment really took me down, I called out of work 2 days this week, sick all day and very tired....

Can someone e-mail me that has gone through this, is this normal to be more out of breath?

Why should I have 1 more, I feel horrible on the third day, anyone else miss work cause of this

Kelly A

#2 peanut


    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 737 posts

Posted 07 March 2008 - 10:58 AM

Hey Kelly,
I don't know about being short of breath. I do know that with every treatment the next becomes harder on your body. Maybe you're coming down with something or spring asthma?

ILD is a mix of inflammation and scar tissue in your lungs. X-rays and CT scans cannot differentiate between the two so its impossible to tell how much of each you have in your lungs. Inflammation can go away where scar tissue is permanent damage. The hope is that it is mostly inflammation and that with treatment the inflammation will dissipate.

When I was working I called in the next day after my cytoxan whether I needed it or not just so I could stay in good health. But each of our bodies are different and we all process this awful chemical differently. Maybe yours needs rest.

Take care,

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#3 kellyA


    Senior Bronze Member

  • Topic Starter
  • Members
  • PipPipPip
  • 73 posts

Posted 10 March 2008 - 03:11 AM

Thanks for your advice, my dr. told me I have no scar tissue at all, just inflammation. She said it was minimal and wanted to be aggressive with the treatments to see if it will go away...

#4 LisaBulman


    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,133 posts
  • Location:Massachusetts

Posted 10 March 2008 - 03:37 AM

Hi Kelly,
I went through 5 cytoxan treatments. I had to stop short because my liver couldn't handle it. I was under the impression that the cytoxan would not improve my lungs but hold it steady. It did, for about a year and a half then my symptoms really came back and I was in the hospital for a few days because I could barely take a breath. Hopefully the cytoxan will help your lungs from getting worse.

Lisa Bulman
(Retired) ISN/SCTC List Coordinator
(Retired) ISN Sclero Forums Assistant Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Fundraiser
International Scleroderma Network (ISN)

#5 Gidget


    Silver Member

  • Members
  • PipPipPipPip
  • 201 posts

Posted 10 March 2008 - 02:17 PM

I had six cytoxan treatments. I made sure to get 2 days rest the day after the treatment. I also drank plenty of water for the first 2 weeks -- 8 or 10 huge glasses a day. And during days 14 through 17, I made sure that I got plenty of rest -- didn't push myself too much. I didn't have many problems following this scenario. Best of luck. Gidget