another cytoxan question

[talentx7]

What is the normal IV cytoxan dose they start patients on?? I'm wondering because Carter started on 1g for the first 2 doses. Dr. lowered him to 750mg on the third because his WBC went to low, but we went in this morning for our 4th and dr. said they are raising him back to 1g and would be in later to discuss it. I am worried because he was so sick that last time. These doses seem so high because he lost almost all his hair and I didn't think that should happen at WG doses??

[me2]

You don't mention how often the 1g dose is being given to Carter, I'm assuming this is 1g per month?
I recently did 4 months of Cytoxan. I am an adult weighing 200 lbs. I was given 500 mg once every two weeks by IV. I think this works out to 1g per month right? My understanding of Cytoxan is that the dose is caluclated according to a formula that accounts for weight and height. I forget the formula (math is not my strong suit) but it should be easy to look up.
I think if I was given 1g once a month I would get very sick. I get sick enough doing the 500mg twice a month. It leaves me sick for about a week. I know this will be different for other people.
One thing I would like to mention is that many years ago I took daily oral Cytoxan for almost two years. I had to quit taking it because of bleeding in my bladder.
Ten years ago I tried taking a small dose , 50mg, for three days and ended up with horrific bladder pain. I mean it was BAD. My bladder is damaged and it doesn't 'like' Cytoxan. So , this time taking the IV Cytoxan I insisted on using Mesna.
Mesna binds to the Cytoxan metabolites in the kidney and protects the bladder from the effects of Cytoxan. As a result I experienced ZERO pain using the Cytoxan this time. This is to me a testament to how well the Mesna works to protect the bladder. It is expensive. One pill costs $118 at the cheapest pharmacy I can find (the pharmacy at the University where I am treated). My insurance pays a little but it still costs me.
I have not had a chance to discuss this topic with doctors or with the very knowlegable people here but my own current opinion is that I would not let anyone take IV Cytoxan without the Mesna protection. I would love to hear input from others on this subject. Maybe JanW heard something at the conference on this subject?

[JanW]

Funny, me2, I was reading your post with rapt interest, and then I saw my name.

I did attend the pharmacology session and can honestly say I have never heard of this drug. The main thing the researchers stressed was that perhaps there would be no need for ANYONE to ever have ctx in the future because of the promise of rtx. I do know that I met the parents of some pediatric patients and that they were all on ctx, so I'm not sure if there are contraindications for rtx in juveniles.

The admonitions against ctx seemed somewhat controversial in the population of attendees, many of whom are experiencing no problems now and believed it saved their lives. It's almost like rtx is the 'new kid on the block' and everyone is dissing their old favorite and they don't like it. Same by the way goes from prednisone.

[talentx7]

Carter weighs 85 lbs. and is getting 1g of cytoxan every 28 days. Today is his 4th round. It does make him sick for a few days after but after that he seems to perk up. I will ask dr. about mensa also.

[DEE]

hi me 2
i found it interesting what you were saying about taking oral cxt as i have been taking oral cxt for eleven months now and have had blood in urine have had scope of bladder done they say its not directly coming from bladder !! stil waiting for report coming back seeing wg consult 26th aug DEEx

[Sangye]

Giving mesna during IV ctx is standard of care. I don't know how long that's been in practice though.

Talentx7, that dose certainly seems high for a little kid. Oral ctx dosage is weight-based so I assume IV is also.

If it were me, I'd be grilling the heck out of Carter's docs. Don't be embarrassed to ask any question at all of them. This is your child and you have to know exactly what they're doing. I'd ask exactly why they're increasing the dose again and why they consider that it is safe to do it now when it clearly wasn't before. It might be. But they owe you a thorough explanation.

[JanW]

Also what rang bells for me was that you said that the nurse said that the doc was increasing the dose and he would come in after and explain??? That really needs to be done beforehand. You can't consent (for your child) to something that you don't completely understand. I have never had to do infusions, but I'm assuming it's something like check your name, check the stickers on the bags, tell you what they are giving you when they hang the bag? Is that how it works? I always asked what bag they were hanging when I was in the hospital after surgery.

[Sangye]

Yes, I always ask what the drug is and I ask to look at the bag to double check it, too. You just cannot be too careful.

[me2]

How does Sangye like her doctors? ... Grilled. Ha, you bet. Me too. On both sides.
I would definately do some research on this and have some questions written down and ready for the doctor. Also I have found the infusion nurses to be terrific resources if you ask them questions. I know if I said to my nurse "I'm not sure this is the correct dose of Cytoxan for me" that my nurse would NOT give me the Cytoxan until he/she got to the bottom of it.

I have had my nurse hunt down my doctor with questions and the nurse tends to get good and prompt answers. Having said that , it is best to try and have all the questions worked out ahead of time.

I am not surprised to hear that Mesna is standard of care for IV Cytoxan AND that I wouldn't have recieved it if I hadn't known about it and asked for it. Standard of care is that thing you hear about AFTER you have received sub-standard of care.
Talentx7 I'm glad you are here working on Carter's behalf. You are the most important person taking care of him.

Hi Dee, I'm sorry you are having blood in urine. When it happened to me it was because I could actually see it. Wow , was that scary. But , that was almost thirty years ago and like so many things it wasn't as bad as it seemed. I do vaguely remember that it was considered that it could be coming from my kidneys. I'm sorry I don't remember any thing more clearly than that. I hope things go well for you on the 26th. Perhaps you could switch to IV Cytoxan twice a month and use Mesna? I know it protects the bladder (boy do I know) and I would ASSUME it would protect the kidneys also. It would be something to ask about. I believe that IV Cytoxan is considered to be as effective as daily oral - don't quote me on that. Its been a long time since I did research on the subject.

JanW, you are becoming legendary and beloved all at the same time. What you are experiencing is the price of fame.
I think Cytoxan will be around for some time. Here is why I think that. My doctor has educated me in drug theory to value new drugs (like Rituxan) and old drugs (like Cytoxan) somewhat differently. Remember Celebrex? They sold literally billions of dollars worth of the stuff until they found out (or already knew and didn't care. Conspiracy theory alert) that it was worse for peoples health than it was worth the benifits. This question is faced by every new drug. Are there unforseen consequences to long term use in a population MUCH larger than the studies that got it approved.
Conversely, an old drug, like Cytoxan, has effects that are VERY well known, even if they are kinda bad.

For example I could ask the WG docs , what is the relapse rate of Rituxan over a five year period? (A very IMPORTANT question for someone taking the drug) and I think they would say "I don't know" . Ask about a ten year period and I guarantee they don't know. The devil you know is sometimes better than the one you don't know. In time we will learn more about Rituxan. Thankfully it is being used for other conditions also so that means more of us geunea pigs.

[katarzena]

I was on 750mg from the beginning. My hair falls out but not much. I've been said that this is nothing compared to what cancer patients get so I don't know why he lost all of his hair. Everyone's different I guess. Good thing is he's a boy at least so it's easier for him to cope with the hair loss, I guess.
edit - I was getting mesna from the beginning too. + rituximab
I had no side effects.