Ild

[Pykie_j]

Hi I'm about to start a 6 month course of intravenous cyclophosphamide has anyone had it ? Does it work ? And we're there any side effects ? Thanks x

[SquirrelsHolt]

Welcome Pykie_j ,sorry I'm not familiar with this medication and not sure what illness you have. Are you able to supply more details so that other members can offer their help and support?

P.S. After writing the above I realise you posted on here a few months ago and explain your very rare condition. Please accept my apologies for not having seen this beforehand. You certainly have gone through an awful lot of late and I would love to hear you have family/friends around you offering support?

Please keep in regular contact as I'm sure you will get positive replies to your original post.

Regards.

[Pykie_j in reply to SquirrelsHolt]

Ah bless you thank you, it's a chemotherapy treatment, one of those things I guess there are a lot worse than me out there , I have an amazing medical team and the best supportive family so certainly not going to complain xx

[SquirrelsHolt in reply to Pykie_j]

That is great to hear. A great medical team,loved ones and you are 2/3 to having the best possible recovery from some very harsh medicine. I hope you will keep in touch with how things go for you and also a quick reminder to yourself - you are a brave lady, coping with an exceptionally rare condition,yet you are so very humble. I truly hope your recovery goes well.

Best wishes.

[Pykie_j in reply to SquirrelsHolt]

Thank you so much for your very kind words , I will definitely keep you updated x

[Hidden]

Good luck with the treatment Pykie. Chemotherapy can be so unpleasant but if it works it will all be worth it. I hope it does.

[Hidden]

G'day Pykie

Sorry to see you need chemo, you do not disclose what the nature of your illness is but in our case it was IPF.

My wife (Susan) underwent 2 months of cyclophosphamide infusions.

Side effects

Loss of hair....Partial ..no bald patches but hair really thinned out

Liver. Normal liver count is 20 Somehow the Dr's missed checking this and when finally taken off this drug Susan's count was over 400. It took 3 months for the liver count to return to normal. Pretty scary time for us.

No other side effects

The Dr's then tried Mycophenolayte, which seemed to work in slowing down the disease, but this was temporary and the Fibrosis flared up again.

Thanks be to GOD Susan received a bilateral lung Tx last year.

If you are to have this treatment I strongly urge you to ensure that the Dr's keep an eye on your liver function.

Best wishes on your journey

Will (Australia)

[Pykie_j in reply to Hidden]

Hi Will, I'm sorry to hear Susan had a bad time of it , I am on mycrophenalat now oral and going onto cyclophosphamide, I have ILD intisitual lung disease. I am having 6 pulses over 6 mths! I hope Susan is fully recovered sounded like she had it rough xx

[Hidden in reply to Pykie_j]

Thanks Pykie

I am sorry to see your health issues are lung related.

Susan's health was of great concern for me during the past 3 years since diagnosis. Still having some issues post Tx but the Dr's are doing their best to fix them. they are non life threatening issues.

Please ensure that your organs are checked periodically, in fact I would be demanding it, although this may not be necessary, as you seem to have a top group of medicos looking after you.

Susan also had the Mycophenolayte tablet.

I wish you well and please remember This disease can be beaten, Susan and all in our transplant group (15) are living proof of it.

GOD Bless

Will

[Carnival567]

Hope all goes well for you xx

[AngieB72]

I had about 3 cycles and it didn't do any thing so they stopped it. I had slight nausea and was tired straight afterwards but other than that nothing. Everyone is different though, I hope it works for you.

[Weemag]

Ive had cyclophosmide 6 treatments over 6mnths made no difference so i jus had a rituximab infusion yest get another in two weeks then another petscan to see if theres improvement. So far for me ive had no success in even slowing down the pf so my fingers xd this works x