Jump to content


Do you want up to date information about Scleroderma? Check out our Medical pages at www.sclero.org for all your Scleroderma questions!


Photo

Cyclophosphomide And Infertility


  • Please log in to reply
8 replies to this topic

#1 PrincessB

PrincessB

    Senior Bronze Member

  • Members
  • PipPipPip
  • 78 posts
  • Location:Strasbourg, France

Posted 10 July 2007 - 03:13 AM

Hi,

I am about to start taking cyclophosphomide to treat interstitial lung disease (I was diagnosed with systemic scleroderma in Dec 2005), either on its own by IV once a month for 12 months, or with a stem cell transplant, as part of the European trial ASTIS.

Have any of you women taken it who hadn't had children before and then went on to have them? Did you freeze eggs before you started? My specialist has spoken to me about a drug which will "put my ovaries to sleep" during the treatment, but he didn't give me the name, does that ring any bells?

I live in France and, although I speak French well, sometimes technical terms escape me, so this forum is a great place to catch up on what I've missed! I'm particularly interested to hear from people who've been on the ASTIS or SCOT trials.

Thanks a lot!
Diagnosed diffuse systemic scleroderma December 2005 (on my 30th birthday, as if turning 30 wasn't enough?!)

#2 peanut

peanut

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 738 posts

Posted 10 July 2007 - 04:58 AM

Hi. The drug in the states is called Depot Lupron. I did exactly that and Cytoxan. With Lupron there's a 90% chance your ovaries will return to normal. I do not know if mine have return as they immediately put me back on birth control which masks what's really happening down there. The only way to know if I get off birth control.

I also think about freezing my eggs because of all the drugs I'm on.

peanut.

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

#3 Sweet

Sweet

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,890 posts

Posted 10 July 2007 - 03:09 PM

Hi Princess,

I don't have any experience with your topic, but I did want to give you a warm welcome to the sclero forums. You'll find a lot of information, support and friendship here.

Welcome to the group!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#4 PrincessB

PrincessB

    Senior Bronze Member

  • Topic Starter
  • Members
  • PipPipPip
  • 78 posts
  • Location:Strasbourg, France

Posted 10 July 2007 - 10:10 PM

Thanks Peanut, that's helpful, at least I will know to check that I will be getting that.
Diagnosed diffuse systemic scleroderma December 2005 (on my 30th birthday, as if turning 30 wasn't enough?!)

#5 jefa

jefa

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,325 posts
  • Location:Scotland

Posted 10 July 2007 - 11:24 PM

Bienvenue sur le forum, Princess! We are happy to have you join us, but sorry to hear about your interstitial lung disease. Like Sweet, I don't have any personal knowledge to share, but here is a link which may be of interest:

Scleroderma Clinical Trials


Warm wishes,
Jefa

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

#6 peanut

peanut

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 738 posts

Posted 11 July 2007 - 04:27 AM

Frankly it was great not having my period, but the hot flashes were nuts. ###### the hot flashes. And my boobs totally shrunk. The doctor said it basically put my body into menopause. Well now I know what to expect when I turn 50.

peanut

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

#7 Alexandra

Alexandra

    Senior Bronze Member

  • Members
  • PipPipPip
  • 46 posts
  • Location:Surrey UK

Posted 12 July 2007 - 02:04 AM

Hello to you!
My name is Alex,I'm a 40 year old woman in the UK.I had 6 months of cyclophosphamide for advanced pulmonary fibrosis,very recently,and because I am 40 they wouldn't freeze my eggs.I have since begun a premature menapause and it is completely dreadful on top of everything else.I have raynauds and hot sweaty flushes at the same time!
I would take any thing that might enable you to at least try to have children one day.For I feel so devastated that the choice was taken away from me.
Oh dear I'm so soryy to be a bit depressing!
Good news is that the cyclo is very effective!
Much love
Alex
xxxxxxxxxx

#8 PrincessB

PrincessB

    Senior Bronze Member

  • Topic Starter
  • Members
  • PipPipPip
  • 78 posts
  • Location:Strasbourg, France

Posted 12 July 2007 - 03:17 AM

I'm so sorry they wouldn't let you freeze your eggs. Good that the cyclo is working though, I guess you have to try and hold that thought to get you through the rest. Did laugh imagining Raynaud's and hot flushes at the same time, I'm always boiling in summer with bright blue hands!

Did you or Peanut lose your hair? I will be receiving between 14.5 and 17g of cyclo cummulatively depending on the treatment I get allocated, do you happen to know your doses? I am wondering whether I should get a wig while I've still got hair so the person who does it can get it as close to mine as possible.

P.S. You no way look 40 in your photo!
Diagnosed diffuse systemic scleroderma December 2005 (on my 30th birthday, as if turning 30 wasn't enough?!)

#9 peanut

peanut

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 738 posts

Posted 12 July 2007 - 04:24 AM

It's the truth... I had major hot flashes with cold hands and feet. My husband thought I was out of my mind.

I lost some hair. I had a friend who participated in the same treatment and her hair came out in chunks, so I guess it depends. My last treatment was in March and here's the strange part half my eye brow and my bikini line keep falling out. It's kind of funny. The nurse said if you put your hair back into a pony tail or cut it short the hair loss shouldn't appear as obvious. However, you are getting more than the 1 gram I did...

Me 40? Naaa 28.

peanut

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