Has anyone with any type of vasculitis suffered a Carcinoma of the bladder due to the side effects of the Cyclophosphamide?

[John_Mills]

[Essex-jill]

I have WG and have been on Cyclophosphamide both orally and via infusion. But I have not had cancer of the bladder. My understanding of the risk of bladder cancer is if you have had long term oral use of Cyclophosphamide.I was in hospital at Christmas when they suspected this with me, thankfully it was just an infection.

Iam very sorry if you now have this on top of vasculitis.

[John_Mills Volunteer]

According to the guide lines anyone who has had a course of cyclophoshamide should be tested at appropriate intervals for any evidence of bladder carcinoma. The greater the cumulative dose of cyclophos the greater the risk of bladder cancer. The good news is that if it is detected early it can be treated and is not usually life threatening. John has a bladder cancer op tomorrow morning follwed by a dose of chemo, this is his second in 3 years. John was taking oral Chyclophos for 5 years after the cyclophos infusions. It worries me to death but John takes it all in his stride.

[Hidden]

So sorry to hear about John's operation tomorrow - all the very best wishes all goes well!.

I had cyclo' chemo' ten years ago and had the accompanying MESNA medicine which I was told was very important to protect the bladder I wonder if this is still used today as I never hear it mentioned. I was also told it was very costly..

[John_Mills Volunteer]

I am not sure if John had any medication to protect the bladder or not but he took oral cyclophos for 5 years after the initial infusions.This is John's second bladder carcinoma, the last one was in 2008....luckily this one is not excatly in the same place so it should be ok to operate on. I think the chemo worries him more than the op, it is quite painful, he has to hold the chemo in his bladder for a full hour after he has recovered from the GA. He will have to go for 3 monthly regular check ups for the rest of his life now. Because he had a DVT in 2007 due to the WG he is on warfarin, this was stopped on Friday and I am now giving John Heperin injections every day for the next 5 days..he will start his warfarin again on Thursday. This WG and it's medication do cause problems but John takes everything in his stride....

[Hidden]

The MESNA is still given, but it is only to stop the bladder hemorhagging it doesn't prevent the canver unfortunately.I didn't know that about the screening though once again another thing my hospital hadn't mentioned

[John_Mills Volunteer]

The hospital never told John that WG can cause a DVT which became a shock to both of us back in 2007...... His carcinoma was operated on early this morning, followed by a heavy dose of chemo this afternoon. He has been sent home this evening a little tired and a bit battered (so he had better behave himself) But I am so pleased he is home...all I have to do now is make sure he behaves....:0)

[Bun1 in reply to John_Mills]

I do hope that John feels a bit better this morning after all that he went through yesterday. Wegeners is a very nasty illness . I've had it for 33 years and have just started getting blood in my urine . However i'm on warfarin and my INR level went quite high so hopefully that is the cause as i've never been on cyclophosamide.

[John_Mills Volunteer]

John is feeling a little delicate today , not as brave as he was last night! I am very interested to know what was your initial treatment 33 years ago when you were first diagnosed? John's INR has been up to about 5, but usually stays around 2.5 now. Hope you are keeping reasonably well?