Newly Diagnosed and starting Cytoxan/Preds/Bactrum today

I'm interested in knowing more about side effects from anyone out there that has been on this same treatment. Just let me know what to expect good or bad. I'm scared but will never admit that to anyone outside of this group.

Thanks!

Welcome to the group.. I have only been on Rituxan, Pred and bactrim.. no side effects for me.. except when I was on steroids.. weight gain, anxiety, moodiness.
Others will be able to help you with their experience with Cytoxan.

Hi HopeinTN,

Firstly welcome to the Forum and a special welcome to our very exclusive disease (I keep more or less sane by trying to keep a sense of humour). Secondly you have every reason to be scared, but do not keep it to yourself, DO let others help you.

I was diagnosed with WG just before Christmas 2010 although it is clear that it started some two to three years prior to that. Whilst I am not yet in remission I definately feel a lot better and am sure that I will be in remission by early next year.

I receive one gramme Cytoxan/Cyclophosphamide by infusion every three weeks. I started out at two weekly intervals but when my consultant originally moved me to a three weekly cycle I immediately got worse again. So we started all over again, but this time when I went to three week intervals I started taking 20mg Methotrexate once a week. I am having chemo tomorrow (Thursday 27th) and am hoping that I will be told that in future I am on a four week cycle. I am also on 15mg of Prednisolone.

Now as to the side effects:-

CYTOXAN/CYCLOPHOSPHAMIDE:
1. It can in long term usage cause cancer.
2. It can also damage the bladder and kidneys - I am given an infusion of Mesna plus two tablets to take that day and advised to drink five or
six litres of liquid for the next two or three days.
3. It will make you INCREDIBLY tired (normally starts about 15 hours after infusion and lasts for upto three days) - I quickly learnt when sitting
not to hold a drink in my hand for too long, it seems that when you go to sleep the glass/cup/mug does not always stay verticle and so the
drink finishes all over you! My neighbours thought it very funny that I fell alseep in mid sentence. If there is something you really must see on
tv RECORD IT!

PREDNISOLONE:
1. Just accept you are going to put weight on!
2. It can cause bones to thin. I was automatically put on a daily dose ofADCAL/NATCAL which is calcium and vitamin D3. After a bone scan they
decided I needed to take 70mg ALENDRONIC ACID once a week.
3. Some complain of mood swings.

The main thing to remember Cytoxan is an immune suppressant so when taking it you will be like someone with HIV, in other words at risk of infection from others. All my family and friends know not to visit me (or warn me if I am visiting them) if they have any nasty bugs. I am a taxi driver and sit in a car with passengers who may be ill but so far I have been lucky. Mind you I do use a hand sanitizer after I have handled the money.

Well I hope I have not frightened you too much, if you have any more problems/queries do not hesitate to post a question.

Hi HopeinTN,
Welcome to the group! I was diagnosed the same time as Dryhill, coming up on a year! I understand how you feel about not wanting to let everyone know how scared you are. And that is what this group is for. We all understand what you're going through first hand.

First, are you on Oral Cytoxan or infusions? How much Pred are you on? What areas did Wegs affect for you? Sorry if you already went over this in another post, I haven’t been on in a while, trying to catch up.

I started Oral Cytoxan last January, the first two weeks were at 100mg, then after they could see I wasn't having a reaction, they bumped me up to 150mg. I was on the full dose of 150mg until July when I was downgraded back to 100mg. I'm currently at 50mg and hoping to start Immuran at the beginning of December.
My experience with Cytoxan has been Ok I guess. I did make me tired and worn out. but I've been able to work full time since diagnosis...I'm 27 years old if that helps put it into perspective. Other than feeling tired, I didn't notice anything else. Since you have to drink TONS of water, I pee all the time...I joke with my counterpart that my office should be moved into the restroom to save me time:) At the beginning of my treatment, I would nap on my lunch hour to make it through the day, that probably lasted for 8-10 weeks.
The Prednisone is a different story. There are many side effects. I experienced:
Weight gain
insomnia
mood swings
acid reflux
acne
some random facial hair (and I'm a woman)
Those are the ones that come to mind now. But once I got down to 20mg, most went away. The weight is the one that is sticking around the longest. I was started at 60mg in the hospital in mid December 2010. Now I'm at 3mg.

I haven't noticed anything with Bactrim...it’s just another pill I take:)

Hope this is helpful. Best wishes to you for a speedy recovery and long term remission!

I saw your other post about your situation. I had similar nodules in my lung at the time of diagnosis. Hope you start feeling better with the meds soon! keep us posted.

Thanks so much for the info. Mine is only in my lungs and after a rt middle lung lobectomy and several doctors telling me it wasn't Wegeners, I was diagnosed by my new doctors at Vandy. They are so amazing.

As for the Cytoxan, it was originally set for 1 infussion per month and see how that goes, but yesterday my doc decided to change to 1 pill every day. I started prednisone and bactrim today and waiting to start the cytoxan first thing in the am. This is great info and I know I'm going to be ok and not alone.

Only good things ahead, after a few bumps in the road of course.

I can't thank you all enough!

Dryhill- 5 or 6 liters every day for a few days? OMG. I was thinking around a gallon a day. While at wotk today I drank 2 liters (8.5 hours) and can drink a few more glass tonight. Will that suffice. I think all the water is giving back and leg aches.

Thanks again!

Katrina,

Welcome to our little club that we would rather not belong to :) Someone mentioned above to not hold back from your friends about how scared you are, and I totally agree, you will need a local support group. But I have found as much as I want my local support to understand, they just can't and so that is what I get from this group. That said my local friends do want to help and be supportive and I learned that i need to help them be able to do that. This whole thing is such a learning experience...

So I am doing CTX for my second time, the first time was 19 years ago and it knocked the Wegs into remission for a good long time. I started CTX again on August first so this is all very recent for me. One thing I HIGHLY suggest is keeping a journal of what medicines you are on and how you are feeling, this has proved very valuable for me. So I am about 135 pounds and I started CTX at 125 mg. You will want to see what kind of dose you are on in relation to others to compare experiences. I am now about three months in and unfortunately I have lost about 1/2 my hair, my hair was really thick to start with and it is now very thin, and that is one of the worst parts... But I think I am on the crappy end of that spectrum and I think I lose more than most. From weeks 1-4 of CTX it was not great but it was not horrible, but weeks 4-7 were just miserable and I needed friends to get food for me and I could not drive or work, then week 8-9 was better and 10-now I am almost normal. This week I rejoined the gym and went to spin class three times... If you get nausea then I recommend ginger tea http://www.amazon.com/Yogi-Ginger-He...9755385&sr=8-2 this worked so much better than the drugs for me. I know that is all very random, but just wanted to share quickly as I have to get back to work for a bit :)

Feel free to message me if you have other questions. You may see posts on here from me from two months ago and I was desperate to hear what to expect so I would like to return the favor to you :)

One thing that I realized this time was that I would have been totally freaking out if it had been my first go round, know that it is rough and it sucks, but things WILL get better. I keep telling myself that this too will pass...

Best of luck!!!!!!

Anna

I have great friends here and back home that are awesome, but it's hard to get to the point to ask. I'm hoping I don't have to ask and it's a rare case of not so bad. If I need them, I promise to ask. Since no one really understands or has ever heard about this disease, they look at me like I have three eyes. Some don't seem to understand how serious it can be/is, and that's hard to swallow at times.

I have crazy think naturally curly hair, so I guess I could use a good thining out if that happens. I also have a friend going thru chemo for breast cancer and she just lost her hair. I told her if it got bad I'd shave it so she wouldn't be alone.

I'm drinking so much water that I think it's causing my back to ache. I have to stay on top of this water thing and not let up. I've had bladder and urinary problems my whole life and that could get ugly quick. I appreciate the honesty. I want to know the good, the bad and the ugly, and pray for the good end of that.

My work is amazing and with my total of 4 hospital stays(1-found spots in for 5 days, 2-lobectomy in for 7 days, 3-kidney infection in for 3 days and 4-brain toxcity from MAC infection meds which I didn't even have) I was able to work remotely and this time will be no different. Very lucky

Anna, I hope you have another long remission and you get there quickly. Thanks for the good info.

I can totally relate to not wanting to ask for help. When I finally did have to ask for help, because I needed food, I was crying so hard it was hard for them to understand me. Have never really had to ask for help before and it was crazy how hard it was. I am super independent, to a fault maybe...