Cyclophosphamide - Bladder Cancer risk

[gwenllian111]

Hi

I hear that Cyclophosphamide can increase the risk of bladder cancer, does anyone have any further info about this? I have +2 hb in urine, but kidney function absolutely fine.

I have recurrent cystitis/inflammed bladder problems since my cyclo, and I could never tolerate Methotrexate either, as for some reason, my bladder would become incredibly painful straight away.
I've always had loads of leukosites too, but my urologist said this was just a sign of inflammation, nothing to worry about.

The blood is new though - should I be concerned? Or am ai just being a complete hypochondriac. Thanks xx

[Jack]

Yes, there is a known risk of bladder cancer associated with Cyclophosphamide use. However, the risk is proportional to the total exposure to the drug over your lifetime and as I understand it, tends to show itself in later years. The risk is not reduced when you stop taking cyclophosphamide, but increases with each further course of treatment. In my own case, I have had multiple treatments and have now reached the stage where my consultant will not prescribe it for me again and we'll have to use an alternative.

Symptoms of bladder cancer may include bright red blood in urine, urgency in needing to pass urine and pain when passing urine. At rest, I believe there are no symptoms. These symptoms can also be caused by infections, so it is one of those things that need checking out.

[JanW]

I was looking at video from the Mayo conference a couple of years ago on the vasculitis foundation website and one of the specialists there called the increased risk of bladder cancer from cyclo "shocking and unacceptable" and said that's why it is now only used in the most severe and life threatening cases. There may be some solid data about this on the Foundation's website -- I don't recall exact numbers.

[Sangye]

Gwen, the immediate risk with using ctx is hemorrhagic cystitis (bladder hemorrhage). If you began having bladder symptoms with ctx, this must be ruled out. It can become very dangerous quickly. Please ask your Wegs doc what to do.

[Jack]

This http://www.annals.org/content/124/5/477.full report spells it out and it does not sound good, but it is old data and the patients involved remained on cyclophosphamide for a minimum of 12 months after gaining remission. This is far longer than current practice and in fact far longer than I took it for over 20 years ago, but perhaps my consultants were more aware of the risks than most.

[Sangye]

I don't see a link in your post, Jack.

[DEE]

at the moment im taking cyclo daily tablet form but consult thinks when i see rhm consult she will want to do it by i v any thoughts on subject as seem not to have serious side affects at the moment other than sleep for england two or three hours at a time
welcome comments

[Sangye]

Make sure you drink at least 1.5 liters of water every day if you're taking ctx. Go to the bathroom whenever you feel any urine in your bladder. Don't wait for it to be full. You have to dilute the ctx and keep it from sitting in the bladder.

IV ctx seems to have fewer side effects, but it also doesn't work as well. There is still a risk of bladder cancer and hemorrhage with IV ctx. They give you a drug to protect the bladder, but it isn't foolproof.

[Sangye]

Jack, that link goes to the current forum page. You messin' with us? :D

[JanW]

Your consultants may have indeed been more aware than most, Jack. One of the things that I saw in the many Mayo presentations I watched yesterday on the vasculitis foundation's website is that the majority of WG specialists believe that non-specialists simply overtreat our problems (especially with pred, but also with immunos) vs undertreatment, once a firm diagnosis has been made. The guy from Boston University's Vasculitis Center said that the natural urge of docs is just to knock any inflammation out as quickly as possible, and worry about the risks later. A mistake when dealing with this disease.

[Sangye]

Yes, my Wegs doc makes a big point of this. Some of his research has focused on evaluation/ decision-making strategies. How to differentiate between active Wegs, side effects of drugs, damage from Wegs, damage from drugs, etc... and what to do about it. He is very conservative about all the drugs. He says that more Weggies die from complications from treatment (eg, infections, cancer) than from Wegs itself.

A big reason for this is that non-Wegs docs are terrified about Wegs. They appreciate the danger of it, but are uninformed about how the drugs and procedures impact us in the long-term. When I go to the ER, I constantly have to fight them off to avoid unnecessary CTs, etc....

[JanW]

As an example, when I have my SS surgery next week, my doc will swab the area with myomicin (immunosuppressent) after dilation which "theoretically" works to help stop the kind of cells that will make scar tissue from forming in that area again. He made very clear to us that there are other docs that will use up to 12 times MORE (max dose) of this med than he will, under the theory that "if some is good, more is better." He was a clinician on the WG research team that also including Langford when they were all at NIH, and he says that he has seen nothing convincing in the literature that suggests that such a high dosage is necessary OR effective. But people do it all the time because they can, and because they don't want the patient to have multiple surgeries (which they still might have to anyway). You are right Sangye, they are scared to death of WG and believe that if they don't act agressively the patient will die, yet don't recognize the fate they may consigning some to 10 years down the road.

[gwenllian111]

Hi Jan
Good luck with the surgery next week. I've had Mytomicyn too, and it's helped me over the years.
How many surgeries have you had so far?

[JanW]

I've had none, other than minor gyno surgery not related to this. This will be my first, and I will likely have to have more than one unless I am one of the rare few that only has the SS surgery once. When I said to my doc that I was already very rare, being African-American and diagnosed with Wegs, he said, "you don't hit the lotto twice." Heh. How many SS surgeries have you had to had. You developed this disease so long ago that you have probably seen the procedure change over the years -- I know they used to use lasers, stents and all of that stuff.

[Jack]

Link in earlier post now corrected. ;)

Although my consultants were very well informed at the time, I think I am now an example of the sort of problems that can occur with long term treatment and aggressive early treatment. Although I have not had any Wegener's symptoms for many years, I'm not in good shape and most of it seems to be down to drug side effects. However, I notice that there seem to be a lot of people on here who are finding it difficult to gain remission and I wonder if some of this is down to an over cautious use of the drugs available.

[JanW]

I'm sure that one risk of overcautious or aggressive use of drugs is that many people with this disease cannot be monitored perhaps as frequently as some doctors feel that they should be because of cost, distance to travel, even wait time at the doctor's office. Every other week visits with my rheumo for a least a year sound rather daunting as of right now, and the longest I'll probably go without a visit to the ENT after surgery is three weeks. Not everyone has the time for this, and some people live far, far away from their specialists. So while they could have the exact same case as me, and receive the exact same care, the docs may not be able to tweak their care to their highest benefit simply because they aren't basically always sitting in the guy's office!

Someone upthread mentioned imaging, and that's an important part of this as well. The Mayo folks said some docs (again, not specialists) agressively scan for anything and everything, ordering up tons of CTs in a year (and increasing the patient's exposure to radiation). Or, they don't take a DEXA at the beginning of treatment so that they can at least see where your bones are before you start on preds. These were two things that the Mayo docs said to look out for.

[gwenllian111]

Jan - are you having laser surgery next week?

For me, my tracheal stenosis was misdiagnosed as asthma for over 10 years - unforgiveable in my opinion, especially as it was only diagnosed when I fell pregnant, and could barely breathe with over 70% restriction in my trachea! I will never forget the terror of being wheeled into theatre as an emergency, with a crash team there, thinking 'it should never have got this bad.' Luckily, all went well, but i've had over 30 surgeries now, and counting.

My surgeries were just laser, but now, it's a combination of laser and balloon dilatations. I know that in America laser is very frowned upon, but here, it's the only option I have. I do struggle with post surgical inflammation, and have ended up in A&E a few times post operatively, having emergency IV pred to help calm the tracheal inflammation down. Still, I have to say, that my breathing is better and more stable than it has been for a while now, so for that, I am incredibly grateful.

[gwenllian111]

Link in earlier post now corrected. ;)

Although my consultants were very well informed at the time, I think I am now an example of the sort of problems that can occur with long term treatment and aggressive early treatment. Although I have not had any Wegener's symptoms for many years, I'm not in good shape and most of it seems to be down to drug side effects. However, I notice that there seem to be a lot of people on here who are finding it difficult to gain remission and I wonder if some of this is down to an over cautious use of the drugs available.


I agree.

Cyclo very nearly finished me off the last dose I had. I developed an acute allergy to it, which I was told was a very rare occurance. I had severe d&v, inflammed heart and lungs, liver failure, and cyclic neutropenia. The neutropenia lasted a long time, and my bone marrow was adversly affected. So, all considering, I wouldn't be suprised if my bladder got a bit of a battering too. But I do sometimes worry what would happen if I got cancer, because I am completely intolerant to all cytotoxics.

[JanW]

Wow. 30 surgeries. Can't imagine. One day at a time, I guess.

No, I'm not having laser, I'm having a balloon dilation. I understand that laser is frowned upon here because of post-surgical infection and scarring risks. Luckily, as far as they can tell I don't look inflammed in that area at all (I am also about 70 percent closed), so they are hoping that everything is fairly straightforward with the balloon and the cutting back of the tissue to open me up. I have steroids in the IV, and pain killers, and go home with no prescription meds at all (they keep you overnight). Most of my scarring is subglottic -- very little in the trachea.

[jola57]

Jan, my thoughts will be with you next week. Jack, my rheumy went for major drugs cyclo and prednisone straight after diagnosis for 6 months and then for 12 moths and although I am not in remission I feel so much better than many of us here. So you may be right that zapping it with all we have might be the answer for some of us. I have anly been sick for 3 years, when did the fallout from the drugs start to show on your body and how long were you in remission the longest?

[Jack]

I've had Wegener's for nearly 25 years. The first 5 years were quite bad with lots of relapses, I then had 15 pretty good years with just a few infections and random symptoms to cope with. During the past 5 years I've deteriorated - lost half my body weight, lots of random pain. I joke to my wife that it feels like I've had a motorcycle accident, but unless you've experienced that it probably does not help the description. I've also got every other steroid side effect known to man!

[elephant]

My local Rheumy only wants me on cytoxan if I am coughing up blood... she has seen bladder cancer from cytoxan so it would be the last. I would probably use the RTX instead if I got worse.
Jack that really sucks that you have deteriorated in the last five years. You have such a good attitude and very helpful!

[Sangye]

Jack, I often think of you and your first 5 years with Wegs. It gives me hope that I can get better, even after all this time (4yrs since dx, 5 yrs since Wegs onset). I understand what you mean by a motorcycle accident. I usually say "dragged by a bus." Too hard to pin it down to one area or one sensation.

[Brooke]

Jack - what are your current symptoms?

[Jack]

Are you sure you want to hear this? ;)

Slightly runny nose. :)
Blocked eustation tubes, tinitus and hearing loss.
Pharyngeal pouch in throat makes it hard to swallow.
Sensitive stomach.
Diarrhea.
Weight loss - from my steroid induced 220 lbs down to 105 lbs. No muscles remaining. :(
Bronchiectasis - permanent cough and can only sleep for a couple of hours at a time before being woken by it.
Thin skin - bruises everywhere.
Osteoporosis - off the scale for lack of bone density.
Lots of non specific pain mainly in legs and feet making walking difficult.
I've also had a kidney transplant and cataract surgery, but these don't cause too many problems.
There is probably some other stuff that I have forgotten to mention.

I've been examined and treated by the relevant specialists for all the above and this is about as good as it is going to get.
The Broncheictasis and ear problems are probably down to Wegener's, but the rest is mainly drug side effects.

[jola57]

There is hope then for some time in remission. I keep watching my results and all is well but liver and kidneys seem to be going. How long did you use steroid for and at what dosage? Were you given calcium and Actonel right from the start or just recently? Thank you Jack. Please be careful with your bones.

[JanW]

Wow, Jack...you have such a positive attitude despite your troubles!

My doc always says to me "I don't want to give you anything that's going to give you problems 20 years from now." But this is a very easy thing to say when you are not in an immediate crisis situation with your health.

[Jack]

I've been taking steroids for nearly 25 years mainly with a base line of 10 mg which I don't seem to be able to get below without major problems. During flares in the early days, I was taking a lot more and I had a starting dose of 1g IV the same as Sangye. I've been taking calcium for about 15 years since breaking an ankle and subsequently having a bone scan. Actonel has been more recent because I didn't like the sound of some of its potential side effects.

[Brooke]

I agree, you have a great attitude Jack! Is there anything that can be done about a pharyngeal pouch? I am not even sure what that is.

[Jack]

There is an operation, but there is a significant chance that it could make things worse. I also don't like the idea of throat surgery when I have a permanent cough and my general health is poor. I'm also taking Warfarin for the embolism and thrombosis that I have had recently.

[elephant]

Jack you and I weigh the same, but I'm 5'1". You are really brave, I'm glad you keep going and doing things. You have it pretty bad and I think it is great that you do stuff to keep busy when you can. So there is nothing else they can do for you. Gosh....

[Sangye]

Jack is one tough cookie. :D

[Jack]

Jack you and I weigh the same, but I'm 5'1".
Oh dear.
I used to be 6'0" but I seem to be shrinking a bit. As you can imagine, I find my appearance to be a bit distressing these days and avoid mirrors and especially photographs.

[elephant]

Jack do you still have your gallbladder? Stomach problems and diarrhea are symptoms of inflamed gallbladder, but of course those symptoms could be medicine related too.
I am sure you see a registered dietitian. You probably take ensure and supplemental shakes too.
Jack you are a tough Cookie!

[Jack]

You probably take ensure and supplemental shakes too.

I can't stand the them!

I have to hold my hand up and admit that I'm suffering from malnutrition, but I find it very hard to do anything about it. I know what I should be doing, but when you feel sick at the thought of food it is difficult to eat the right things. I can now understand how people with eating disorders must feel.

[elephant]

I hear you Jack. I had a friend who had anorexia and she only at three apples a day. She was my height and 80 pounds sometimes thinner. She kept telling me she was fat!

[JanW]

I know what it's like to avoid photographs, Jack, with the recent saddle nose. And I was always someone who liked having my picture taken, and in fact was rather enamored of my own attractiveness. Now, I think everyone's looking at my nose. It's made me very self conscious.

[jola57]

I broke my nose when I was little and had a botched nose repair when I was 18. The result was a crooked nose (part of my cartlige is missing) so for most of my adult life I have had a crooked nose. I had even a rival for my husband's affection write a poem about it to him (huge LOL) but I survived and was not bad looking (if I say so myself) it is only now with the double and tripple chins and puffed up face and bulging eyes that I can't look at myself and not feel pity. But then that is just how life if , always throwing you a curve ball. So chin (chins, ha ha) up and smile, your nose is OK and you are OK :))

[elephant]

I had a broken nose at age 12, my friend whip a tennis rack right into the bridge of my nose. I have never had it fixed, I figure it adds character.

[jola57]

Exactly, I tried walking on hands and didn't do so well

[gwenllian111]

you guys have all been through so much :-(

[Sangye]

I think it's a testament to the kindness and resiliency of our members when someone like Gwen (with extensive Wegs involvement beginning in her teens) expresses "You guys have all been through so much."

I love our group. :)

[JanW]

Me too, Sangye. Me too.

[Lightwarrior]

Me too, Sangye. Me too.

Me 3 :-) Best therapy ever

[gwenllian111]

Me 4 lol . You guys are the best xx

[elephant]

I fifth that- "The Best!"

[Sangye]

I'm going to 6th my own statement. Because I can. :D

[jola57]

I'll trump you and say 7th.

[Jack]

This is silly. Stop it at once all of you!

8th ;)

[jola57]

That's sneaky Jack. FYI I will be back in UK this early summer. Our oldest has been accepted to Durham Univerity to do his masters/Phd. He has 3 others to chose from but likes the city of Durham. London and Plymuth also sound good.

[elephant]

That is great news Jolanta! So happy for you and your family.

[Sangye]

Jola-- congratulations and I'm glad you get to travel again!

Jack-- I just love your sense of humor. :D

[gwenllian111]

I'm waiting for a cytoscopy, u/s scan of bladder/kidneys. Urine analysis shows no infection, just inflammation. Keep waiting to hear bad news! I know it's pessamistic, but I don't have a good feeling about it all. The cyclophos absolutely traumatised my bladder :-(

How are you all?? I was very sorry to hear that Jack is in hospital. Does anyone know how he is?

[Sangye]

I hope it goes well, Gwen. Ctx is bad news, but the body can surprise us with its amazing ability to heal.

[elephant]

Hang in there Gwen. You have youth on your side. You will heal. :)

[jola57]

I had a bit of trouble with my bladder and had 2 cystoscopies in 6 months because of a red spot. it was just some burst blood vessels. i hope that is all they find in yours if anything. Keeping my fingers crossed and being a total optomist for you :)

[gwenllian111]

Thanks! I went into hospital today for my Ritix, but my Rheumy changed his mind because i'm losing a lot of blood in my urine. Having a us scan of bladder later on today.

I'm a bit annoyed, because my urologist was meant to send a sample of my urine to check for bladder cancer, but they forgot! aargh.

[elephant]

Geez Gwen, that is the pits. Stay strong Gwen. We are all here for you. :)

[Sangye]

Oh, how disappointing! Hang in there Gwen. Like Elephant said, we're here for you.

[Col 23]

Hope all goes well G. Thinking of you. Love the pic of your baby.
Col 23

[gwenllian111]

Aww thanks guys! Scan went well, nothing found. X

[Sangye]

I'm so happy to hear that great news, Gwen! Did they reschedule your rtx?

[renidrag]

Where was I when all this frivolity was going on, you are all special people. So helpful, and serious and funny.
Jack, I would like to sit and talk engineering with you someday, my friend and I went to D.C. and talked most of the day about how they could have built most of the memorials and such "back in the day". I'm sure you would have enjoyed it. Still miss you here on the forum, hurry back.
Dale

[elephant]

So happy to hear Gwen that nothing was found! Yahoo! Now you can take a deep breath. Hope you can get your next treatment soon. :)

[Lightwarrior]

Aww thanks guys! Scan went well, nothing found. X

Hip Hip Hooray, whooo hooo. Happy days Gwen:cool:

[gwenllian111]

Thanks guys! I still have to wait for the cystoscopy, which is next month. My Rheumy hasn't ruled out bladder cancer yet, but I take the scan as a very good sign. Fingers crossed.

Ritix in 2 weeks time. My Rheumy needed to make sure there was no infection first, as the Ritix could have potentially made things worse otherwise. :)

[jola57]

Keep the faith Gwen, negative scan IS a good sign