CTX (chemo)

[Stephanie78]

So...how many of you have had this form of treatment? Was it orally or by IV? How many treatments did you have?

John is having the IV form. He is scheduled to have it once a month for 6 months. (Or possibly 3 depending on the blood work @ 3 months.)

He has to go back to UNC Chapel Hill for the treatments which includes flushing his bladder with a sugar saline mixture (Via IV) one bag of CTX then another bag of the sugar saline mixture to flush his bladder again (The sugar Saline causes him to go a lot more!). They said they have to carefully flush his bladder because the CTX is so toxic and causes harm to the bladder.

Anyone experience this type of treatment?
Not that I doubt the doctors in what they are doing, I just wanted to see how others dealt with it (If there were any side effects rather temporary or perm)

[Sangye]

Probably the majority of people on here have taken ctx. I was on it twice-- oral both times. I did not do well on it at all. My first doc (not JHU) kept me on it for 7-8 months when it was destroying my bone marrow the whole time. I got weaker and weaker and the Wegs was barely controlled. I didn't go into remission. In 2009 Dr Seo put me on it for a flare but I only lasted about 3 weeks before my marrow started failing again. He said I can't take it again.

I'm always amazed at people who go on ctx and say they feel better and better. I can't even imagine that! But most people do seem to tolerate it just fine.

Why are they using IV ctx instead of oral? Oral is more effective and easier to control.

[Stephanie78]

I had actually spoke with Phil concerning this while John was in the hospital (via facebook) he asked me the same question. I asked the Rheumy and he said that the oral form is more toxic and poses more threats or damages. Of course me not being a doctor I just nod and say "Oh Ok". He had his first treatment on Friday (of last week) he did well other then burning in his bladder area during treatment.

He said that he likes to monitor his patients while they are taking it for several hours because it causes such high risks (which is why John will go to Chapel Hill again and be observed before, during and after he takes it.)

John has so many changes that I'm unsure what it is...Ok I know what it is, he has been sick (really sick) he he has so many new meds in his body that it is causing all the changes. The mood is the worse. Sigh....We will get thru it!

[NicShaf]

Stephanie,
Ctx is the common treatment for Wegs, Rtx is becoming more popular though. I am currently on Ctx. I was dx is Dec 2010, so this is my first go around with Ctx. I tolerate it pretty well. I don't notice too many side effects from it, a little more tired than usual, but I just rest more and I seem to do OK. Most of my annoying side effects are from Preds.
I am taking oral Ctx because, like Sangye said, it is shown to be more effective in treating Wegs. I drink TONS of water to flush my bladder. I have one of those plastic cups with a straw...bascially a sippy cup...that never leaves my side. It's 24oz, i drink at least 5-6 cups a day.
I started my treatment on January 1st, 150mg daily, and will hopefully be switching to Methotrexate next month when I see my Rheumy. I think that is the norm too, 6 months of oral CTX then switching to a maintainence drug.

[Sangye]

I'm concerned that he had burning in his bladder during treatment. That definitely should not be happening and it may be damaging his bladder. They should be giving him something called Mesna to protect the bladder. It's routinely given with ctx.

It's extremely stressful to be diagnosed with something like Wegs. I never could have imagined, actually. It may be a good idea for John to see a therapist to help him deal with the changes. I've seen one since I was diagnosed. It's made a huge difference in how I've managed. It's also helped me use Wegs as a vehicle to heal a lot of old wounds and transform in positive ways.

[Jack]

Oral ctx was pretty well the standard treatment for Wegener's until quite recently. IV administration often used only to get things started more quickly. The main danger from it is bladder problems so anything that may indicate this should not be ignored.

[Stephanie78]

He had so many meds given while in the hosptital. I do know he had a small bag of something (I thought it was the steriod) afterwards.
I kid you not, I have learned to take a notebook and pencil and write EVERYTHING down and ask any and all questions possible.

I requested that he see someone/talk to someone before leaving the hospital but it never happened. I know he has reasoning (Justified) for how he feels and acts. I on the other hand feel like I'm gonna have a mental breakdown and just feeling that way brings on new guilt of all sorts.
The biggest issue I am having with him is that his muscles are weak still. For a living he drives a semi truck. He is on medications that states "DO NOT OPERATE HEAVY EQUIPMENT WHILE ON THIS MEDICINE". He is determined to go back to work. His boss understands his illness and has been incredible thru it all. He has short term dissability that she has encouraged him to take for a little while. I keep trying to express to him the dangers of him returning to work (for him, his company and innocent motorist on the road). I honestly think he understands that but doesn't want to (if that makes sense). I feel like now he has a resentment towards me because I discourage him from working for atleast a couple of weeks (until he feels better and has more muscle use).

[Stephanie78]

Oral ctx was pretty well the standard treatment for Wegener's until quite recently. IV administration often used only to get things started more quickly. The main danger from it is bladder problems so anything that may indicate this should not be ignored.

That is what they explained to me. Which is why they said they did a full bladder flush before and after treatment. He had burning during treatment which they stated was normal but nothing afterwards (he was kept in the hospital 4 days after the treatment).
I would say the only "body" function he is still having problems with is having a bowl movement. He is on colace twice a day and I am going to have to pick up more mirelax today for him to take. I'm just so scared if he continues to use these items his bowls will become dependant on them.

[Sangye]

The Mesna would be given first. You are wise to note everything! John is very fortunate to have you looking out for him.

You both are going through enormous emotional changes. The entire dynamic of your relationship has changed. Can his doctors intervene with work recommendations? It sounds like he's very frustrated at his condition and is transferring his anger to you instead. If he won't see a therapist you can. It does help, even if only one of you goes. Wegs is a long haul, even when things go as planned.

[Rose]

I was also told that the IV's were the best choice for the same reasons. I had basically the same regime. I was fine with the IV's just some nausea on the day following which was alleviated by medicine. That was almost 3 years ago and since completing the IV's I have remained in remission with Cellcept 750mgs twice daily and prednisone 5mgs daily. Good Luck!