Cytoxin and cancer?!

[JillianDudo]

So I'm fairly new to this forum, but was diagnosed with WG in 2007 at age 21.

Every now and then I go through and read people's posts about they're disease process and treatments they've tried.

Recently, I've been reading a lot about people on cytoxin and getting cancer from it! I was in cytoxin for almost two years when I was first diagnosed, but was taken off of it because it made my liver enzymes too high.

I just wanted to know more about getting cancer after taking cytoxin. Any information would be much appreciated.

[Pete]

One of cytoxan's side effects is bladder cancer. Periodic urinalyses with microscopy can identify potential cancer. A cystoscopy can provide visual evidence of tumors.

[JillianDudo]

So bladder cancer is what I should be concerned about and monitoring? I do have labs and UA fairly often - especially now that I'm pregnant.

Thank you for the information.

[me2]

I was on daily cytoxan for two years- about 37 years ago. I had to stop taking it because of bleeding in my bladder. The good news was that I had remission at that point. Some time in the last 14 years I again took Cytoxan for a few months.
This time it was IV Cytoxan every two weeks. I have been lucky to not have cancer. My understanding is that the risk of developing bladder cancer is somewhere around 17%.
In all these years I honestly don't worry about it. I had no choice but to do the Cytoxan to stay alive. Its not like I'm going to regret that. Life is full of risks. Cancer from Cytoxan is really a small one in the big scheme of things.
I also realize that the risk factor is for all people who took Cytoxan. Many of those people I'm sure do not take care of their general health as good as I try and do. So I do not consider the odds of ME developing bladder cancer to be as high as for the general population.
I have beaten the odds in many ways with this illness. I think it is because I have put a lot of effort into trying to be healthy- not simply trying to not be sick (although I've had to do a lot of that too).
Translate any worry you might have into living a healthier life style and it will ease your worry.

http://www.hopkinsvasculitis.org/vasculitis-treatments/cyclophosphamide-cytoxan/

[daystarr8]

So I'm fairly new to this forum, but was diagnosed with WG in 2007 at age 21.

Every now and then I go through and read people's posts about they're disease process and treatments they've tried.

Recently, I've been reading a lot about people on cytoxin and getting cancer from it! I was in cytoxin for almost two years when I was first diagnosed, but was taken off of it because it made my liver enzymes too high.

I just wanted to know more about getting cancer after taking cytoxin. Any information would be much appreciated.

I had a great deal more cytoxin than you I had two time periods where I took it for 4 plus years. Please check your bladder regularly. When u are on treatment drink water as much as you can all day and urinate frequently. My bladder hemorrhaged at the end of a long treatment we checked the bladder and it was just irritated BUT I had a 9 year remission , went to school , hot married, did life! And we didn't check the bladder 😞so when I relapsed we started cytoxin again and 11 months into it my bladder bled again thank God I was in remission. So we checked the bladder and found a huge tumor 😞😢😢😢yep stage 3 cancer. But I'm 11 years cancer free!!!😀

[JillianDudo]

That's great that you're cancer free! It's just a very scary"side effect" to have to worry about.

I did cytoxan via IV as well before starting oral cytoxan. I was always scared it would make me infertile - because all I've ever wanted was to have a family.

I just recently found out in some prenatal labs I did, that a.blood transfusion I had in 2007 gave me this super rare antigen - FYA. All my doctors know nothing about it and have been trying to research it. My rheumatologist actually called me back the next day and had found everything I needed to know about it (why I love him so much and believe he IS the best doctor I've ever had) - basically with this antigen you can't have a kidney transplant, which is scary because if I flare and my kidneys take another hit, I WILL need a transplant. Im 23 weeks pregnant and have been reading a lot about how WG tends to flare after pregnancy. Needless to say I'm terrified. It seems as though every rare "thing" I have. So I get the bladder cancer concern because if it's a 1 and 1000 chance, I'm usually the one :(

The past couple years I've been in remission, I think I've accepted the disease and how different my life is from my friends and family. But since becoming pregnant, I think I'm resentful against WG. I get so angry I cry, especially when finding bad news due to the WG. I just want to have this "normal" life and be there for my daughter - instead I'm scared I'm going to die or be connected to a dialysis machine for the rest of my life...

[daystarr8]

Jillian you are so blessed. I was infertile from cytoxan but I started treatment at age 9. I understand the fear of dying but you have to remember one thing that we ALL die from something. So what is important is that we live for today. Love your life. Be thankful for what is amazing in your life like your husband and unborn child. There are so so many things to be focused on other than what WG is going to do to you. It's a chronic disease and you will battle it hard at times and then have some relief too. I have had some really bad hits to my body but I have a wonderful husband an amazing career, my own business too. Life is difficult but I find the positive things in it and love them. So many people just give up. WHY? I can walk, talk, vacation, work, love, I can live it's a choice to make the best of what we have.

[gilders]

instead I'm scared I'm going to die or be connected to a dialysis machine for the rest of my life...

This is a serious disease.
But remember, many people join this forum either when first diagnosed or when they're having a serious flare and begin to look for answers.
There's probably a lot of people who have Wegener's and it has effected their lives to such a small degree they don't ever need or think about searching for forums.

Please don't think I'm saying "Wegener's is nothing to worry about". In fact I am one of the people who Wegener's has completely altered my health and life.

Don't stress and panic about what ifs, but be prepared/on the look out for what ifs.

[daystarr8]

This is a serious disease.
But remember, many people join this forum either when first diagnosed or when they're having a serious flare and begin to look for answers.
There's probably a lot of people who have Wegener's and it has effected their lives to such a small degree they don't ever need or think about searching for forums.

Please don't think I'm saying "Wegener's is nothing to worry about". In fact I am one of the people who Wegener's has completely altered my health and life.

Don't stress and panic about what ifs, but be prepared/on the look out for what ifs.

I agree Dirty Don! I too have had bad times battling but also good times as well. With any disease life is what you make it. Most people have something they suffer from like depression, money, stroke, MS. There is so much to be thankfully for. I can work, laugh, walk, eat, travel. I'm doing my best with what I have

[Donna-from-Philly]

I have had this disease while raising two children. The oldest is in college and just gave a speech about WG in her communication class. My son wants to study physics to make medical machines run more efficiently because of this disease. I am often upset that I have this disease. The kids to see it as a blessing and a curse. They are more considerate, and we spend consistent quality time together . Something I took for granted before.
Please just keep looking forward and enjoying the day you have rather than the possible days you won't have.

[me2]

Thanks Donna . That is the best advice I have heard in a long time- "enjoy the day you have rather than the possible days you won't have". I have lost a lot of the life I would have had and the possible future I might have had. But I am loosing more by being stuck on that. I have to get over my grief of what this disease has done to me (even though it isn't finished with me yet) and not let it take away every second that I WILL have where I can live the way that is in reality possible.
I like your short way of saying it better. Thanks

[Wegetarian]

Yeah, I'm with Gliders. I think all of the autoimmunity meds elevate the risk of getting cancer, and of course its awful. But worrying about getting all the side effects that are listed on the meds is a waste of time and energy. Of course its good to look out for symptoms, so if something happens you could be treated as early as possibly - but try not to stress about those things unless you get affected.

[chris.wg]

I was on Cytoxan for 2 years and was immediately told about the cancer risk. However, when I was fist diagnosed I was laying in a hospital bed and looking pretty bad. I am glad to be on Rx now. But my view on it has still not changed. I honestly believe without the treatment I was not walking out of that hospital. That alone makes the treatment worth the risk for me. After rereading this I know it sounds grim but believe me it is not how I intend it. You just need to keep being positive.

[miracleshappen08]

Yes, be very careful with a flare up after pregnancy!! The WG actually gets better while pregnant because of all of the hormones that are created, but drop off after baby is born. So you can have a flare up! I had a flare up after my second one and I have not been able to get better since and she is now two.


Miracles do happen!!