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talentx7
08-11-2010, 03:46 AM
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
08-11-2010, 05:04 AM
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
08-11-2010, 05:10 AM
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
08-11-2010, 06:17 AM
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
08-11-2010, 07:09 AM
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
08-11-2010, 10:50 AM
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
08-11-2010, 11:02 AM
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
08-11-2010, 11:18 AM
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
08-11-2010, 12:41 PM
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
08-11-2010, 08:00 PM
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.

JanW
08-11-2010, 09:05 PM
Me2, I agree that ctx will be around for a while if for no other reason than the fact that it's going to take a long time for a new drug to gain acceptance because the population of docs whol follow this disease are so small. And of course, as you say, it will be years before there are long term studies of the drug's effectiveness in WG.

Sangye
08-11-2010, 10:20 PM
How does Sangye like her doctors? ... Grilled. Ha, you bet. Me too. On both sides.
ROTFL Exactly. :D


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.
IV ctx is not as effective as oral. It's used with kids because they can't swallow the giant pills.


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
Yeah, ctx isn't going anywhere. Rtx doesn't work for everyone and the more options we have, the better. Rtx has been used for at least 10 years in people with NHL. They get much more of it than we do, also. So at least we're not total guinea pigs!

talentx7
08-12-2010, 02:20 AM
Hi everyone, Dr. said they needed to increase the ctx because the 750mg didn't lower his WBC count enough. It was at 14.80 yesterday. So they think he needs that stronger dose. My husband argued with the nurse intil the dr. ended up coming! I'm sure she hated him by the end of the day. Dr. also gave us info on RTX. She said she might switch him to that. She said its giving by IV 2x, then not again for a year. Has anyone taken that???
I am thinking 1g of ctx is alot for a child if adults are getting 750mg. I wish i knew what other kids where getting. Does it depend maybe on how severe you are when first seen?? They did tell me they were going to treat him very aggressively. But how much is to much?

me2
08-12-2010, 02:20 AM
[QUOTE=Sangye;22683]ROTFL Exactly. :D


IV ctx is not as effective as oral.


Good morning all. Well, I just had to break out the ole research hat and find out why I thought IV Cytoxan was as effective. I spent a good deal of time researching on Pubmed. Mostly I wasted a lot of time because the work that was done comparing oral ctx and IV cytx was done over ten years ago. I found several articles on the subject and one of them seemed particularily good at summing up what the others were saying. I post it here for your reading pleasure:



Br J Rheumatol. (javascript:AL_get(this, 'jour', 'Br J Rheumatol.');) 1998 Jun;37(6):659-64.
Wegener's granulomatosis: long-term follow-up of patients treated with pulse cyclophosphamide.

Koldingsnes W (http://www.wegeners-granulomatosis.com/pubmed?term=%22Koldingsnes%20W%22%5BAuthor%5D), Gran JT (http://www.wegeners-granulomatosis.com/pubmed?term=%22Gran%20JT%22%5BAuthor%5D), Omdal R (http://www.wegeners-granulomatosis.com/pubmed?term=%22Omdal%20R%22%5BAuthor%5D), Husby G (http://www.wegeners-granulomatosis.com/pubmed?term=%22Husby%20G%22%5BAuthor%5D).
Department of Rheumatology, University Hospital, Tromsų, Norway.
Abstract

Treatment with daily oral cyclophosphamide (CY) has improved survival in Wegener's granulomatosis (WG), but is associated with severe and potentially lethal adverse effects. Less toxic treatment regimens, such as pulse CY, have been used, but the effect has been questioned. We have treated 11 patients with WG with pulse CY (15 mg/kg initially every second week, gradually increasing the pulse interval). After 4.5 yr follow-up and a total of 501 pulses of CY, one patient died and eight patients (73%) were in complete remission. Remission was induced in 91% of the patients after a median period of 3.5 months and relapses were seen in 60%. With the same treatment protocol, a new complete remission was induced in 75% of those relapsing. Except for one patient who died, no patient developed end-stage renal failure. Haemorrhagic cystitis was not observed and no malignancies recorded. Severe infections were seen in 36%, but none caused by Pneumocystis carinii. Nausea was the most frequent side-effect, seen in 64% of the patients. We conclude that treatment with pulse CY every second week is safe and effective in inducing remission and treating relapses in WG. The relapse rate seems to be higher than with low-dose oral CY, but the cumulative dose of CY is less.

-- Ok, me2 again, (sorry about the giant type above. I am not shouting, it just came that way)
Yeah, no kidding the cumulative dose is less. I recently took 500 mg IV Cytoxan every two weeks. A regamine of daily Cytoxan at 150 mg per day would have put me at 2100mg per two weeks. Considering the long term importance of cumulative use and the fact that there is a fixed limit to how much we can take (I don't remember the number) it seems the difference is huge. Add to that that mesna is given with IV ctx but not usually oral (I've never heard of it being used with daily oral ctx. Maybe someone can tell me they have used it that way) and I am surprised not more is made of this.
I would love to have one of you with a big giant head doctor (affectionate term for those of you in the East with the most knowledgable of WG doctors) if pulse ctx and use of mesna is effective at avoiding bladder cancer. I would think it would be. I have not heard of anyone using mesna with daily oral cytoxan. I think it would be prohibitively expensive -maybe not for some with great insurance. I have not heard of a study assessing the role of mesna in preventing bladder cancer. Aren't doctors always looking for something to publish lest they perish?

And to go back to previous discussion about Rituxan replacing Cytoxan. I looked at the RAVE trial and it stated that sixty some percent of people achieved remission with Rituxan. I think that would mean that roughly forty percent of people had to then do something else.

JanW
08-12-2010, 02:28 AM
Was there a time period on the rtx data that you saw me2? I wouldn't be surprised if only 60 percent was achieved at a three month interval, and at six or nine it was much longer. Also RAVE had some amount of switch offs -- people who had to go to ctx or rtx because the other version wasn't working for them at all.

Then there is a group of patients (perhaps less than 20 percent, but not that much less) that never achieve a clinical remission with the disease and their medication regimen is always fighting something. Remssion is the likely goal but not always achieveable, just like the WG survival rate at five years isn't 100 percent.

Talentx, sorry your husband had to get into with the nurse but good for him. These are toxic drugs and you have the right to know all of the information before they are given to your son.

me2
08-12-2010, 02:48 AM
Talentx I don't know if you have been asked yet but are you aware of the Vasculitis Foundation? They have a list of doctor consultants who are really THE experts on Wegener's. If I had ANY doubts about the course of my care I would have my doctor call one of their experts and consult.
This is commonly done and it doesn't cost anything. The list of consultants is on the VF website. This is a great resource. If you are worried that it would insult your doctor I would say don't worry. Any doctor that would be insulted by being asked to consult with one of the world experts is not worth having in my opinion.
Your doctors may be doing exactly the right things but it cannot hurt to ask. Its a phone call and a brief discussion - no big deal - peace of mind, very big deal.

JanW
08-12-2010, 03:15 AM
I just looked and see that you are in CA, talentx. There will be a vasculitis center opening at Cedars-Sinai (if you are in Southern CA) and some patients are treated at UCSF (if you are Northern), although they don't have any peds rheumys in either place that are VF consultants. I met a peds rheumy fellow (so in that final year of training I think) at the conference in Long Beach. I think her first name was Sue and she was at (I think) UCLA. She was six months pregnant, I remember that. She said that her group had diagnosed three children in the last few months (maybe one was yours). They were all under 12.

At the conference, they also did continuning education (in the form of a lecture for several hours) for 100 docs (this was a VF first; having the researchers speak to other doctors) -- most of whom I am certain were from within driving distance. You could also call/email the VF and ask for a list of those names.

As an aside, my surgeon's presentation on subglottic/tracheal stenosis at the conference was the same one that he presented to a group of rheumys in Philadelphia and included case presentations with quizzes at the end. We as patients (many of whom have this particular manifestation of WG) scored better on the quizzes than the doctors, he said. Let that be your guide, many doctors -- even excellent rheumys -- know nothing about the peculiarities of this disease. I know that the CA patients at the conference in particular complained about the arrogance of their docs, but I don't know if that's just because I met a lot of CA people. I talked to one woman whose husband's doctor refused to discuss his treatment plan with a VF doc, and other who fired his (ped) patient and his mom. And these weren't community hospital people -- these were big Southern CA hospitals.

Good luck!

talentx7
08-12-2010, 07:01 AM
JanW, I believe you met one of Carters interns! And yes, they did tell us they recently diagnoised more children at UCLA. I believe Carter is 1 of the 3 she was taking about. Strange to have 3 under 12 all within a few months of eachother. Carter is treated at UCLA, they are listed on the VF website. I don't think I saw a listing of Dr. Are they on there too?? I will have to look her up. I believe she is a ped. spec in WG because she talks at conferences all over about it. I will see what I can find out.

JanW
08-12-2010, 07:42 AM
I figured that when I put all of the pieces together. I know several of the other vasculitis (non-WG) patients are treated at UCLA..didn't realize their specialty included WG as well. Sounds like you are in good hands -- she was terrific and she was terribly excited to see Gary Hoffman speak -- he's one of the 'gray beards' of wegs research.

Sangye
08-12-2010, 10:58 AM
LOL-- Love that Weggies did better on the quiz than regular rheumys. I'm sure there were a lot of smug faces in the audience the day he gave you guys the quiz. :D

JanW
08-12-2010, 10:58 PM
Oh yeah. Whole point of his talk was that even rheumys who are attending lectures on this stuff to get continuing ed credits (so are naturally interested), really have no clue about what to do about tracheal stenosis in the vasculitis patient because it's so incredibly rare. You don't want to be a sample of one for any doc, not even the best one, which is why you, Sangye, always do such a good job of nagging the rest of us to see a specialist!

Sangye
08-13-2010, 02:05 AM
LOL-- It's my full-time job.

Lightwarrior
08-16-2010, 06:11 AM
LOL-- It's my full-time job.

And yes....even though you put in lots of overtime...we're (me) still happy you nag.

Psyborg
08-22-2010, 08:42 AM
Just had a question regarding Cytoxan...I've been on it for about 2.5 weeks now. Really not feeling much for side effects, though the Pred stuff is bugging me alot more anyway. What I wondered is, roughly, when I should feel like it's doing anything? I'm really tired of the Pred, but every time they've started lowering it the pain and inflamation becomes a problem. I assume the CTX should reduce that if it's working for me. I know this is probably a question that might be better for the doctor but you guys seem more real to me...not sure if that makes sense lol

Sangye
08-22-2010, 10:50 AM
Psyborg, experiencing side effects is not an indication that the ctx is working. Your bloodwork will show the decrease in WBCs, which is what lowers the immune response and gets the Wegs under control. And if the ctx is working, you will start to feel better Wegs-wise.

Having said that, it's still very early to be noticing ctx side effects. Other than nausea that affects some people immediately, the side effects of ctx build up the longer you take it. I remember when I was first on it. I expected to feel horribly sick, like a cancer patient. For about 2-3 weeks I kept saying the pills must be duds because I didn't feel anything! By the end of the first month I started to feel kind of lousy. Each month after that got worse and worse. That isn't always the case. The ctx was overly toxic to me and was destroying my bone marrow, but my doc at the time ignored that and kept me on it for 7-8 months. It also was not controlling the Wegs for me, so the fire was still raging.

Take home message is just wait and see. You might feel so much better with the Wegs getting controlled that it outweighs the side effects of the ctx.

JanW
08-22-2010, 11:25 AM
Sangye, a question that I have always been curious about, not being on pred, is when people talk about having been on ctx or another immunosuppressant for months and then go below, let's say 15 mg of pred a day and find symptoms coming back. Surely the ctx must be controlling the inflammation by that time, so what's at play here? I understand that it could be very hard indeed to kick the pred, but I've never understood how symptoms come back if the immunosuppressant does remains the same, bloodwork is normal but the pred is just being reduced.

Sangye
08-22-2010, 12:13 PM
I think that can happen for different reasons. In my case, once I got below about 20mg pred (during my initial treatment), many of my symptoms came back. In retrospect it's clear that the Wegs was not being controlled by the ctx and that the higher doses of pred had been holding down enough of the inflammation to make my blood work improve. The pred was masking the fact that the Wegs fire was still going strong.

Jack
08-22-2010, 07:29 PM
Pred damps down the inflamation. In other words it hides the symptoms.

Immuno-suppressants tackle the cause of the inflammation.

It is not fully understood (not by me anyway ;) )why the combination of the two are required to successfully treat Wegener's because you would have thought that suppressing the immune system alone would do the trick.

Psyborg
08-23-2010, 04:31 AM
Psyborg, experiencing side effects is not an indication that the ctx is working. Your bloodwork will show the decrease in WBCs, which is what lowers the immune response and gets the Wegs under control. And if the ctx is working, you will start to feel better Wegs-wise.

Having said that, it's still very early to be noticing ctx side effects. Other than nausea that affects some people immediately, the side effects of ctx build up the longer you take it. I remember when I was first on it. I expected to feel horribly sick, like a cancer patient. For about 2-3 weeks I kept saying the pills must be duds because I didn't feel anything! By the end of the first month I started to feel kind of lousy. Each month after that got worse and worse. That isn't always the case. The ctx was overly toxic to me and was destroying my bone marrow, but my doc at the time ignored that and kept me on it for 7-8 months. It also was not controlling the Wegs for me, so the fire was still raging.

Take home message is just wait and see. You might feel so much better with the Wegs getting controlled that it outweighs the side effects of the ctx.

Thanks, all the information you folks provide is of great help. I feel so lucky to have what is a comparatively mild case here. I have the somewhat unrealistic hope of a return to some semblance of normal soon, I think that's my problem. And the Prednisone effects seem to be getting more and more pronounced now. I just don't know how much join pain I should expect to be the new normal even in remission assuming it hits remission. Makes it hard to figure out what is going to be normal versus what is genuinely still related to the current flare. I figure that will come in time, but I'm terribly impatient at times. :rolleyes1:

Sangye
08-23-2010, 12:15 PM
Psyborg, I had joint pain until the rtx finally got the Wegs under control. Even Dr Seo was saying I'd have to live with it. We didn't realize it was an indication that the Wegs was still fairly active. I don't know if that's universally true, though.

elephant
08-23-2010, 08:08 PM
My theory is that if you have joint pain, your wegeners is active. I think it is a good indicator of how your doing.

Jack
08-23-2010, 08:29 PM
To a large extent I tend to agree with you, but I have also had joint pain due to steroids.

Psyborg
08-23-2010, 09:48 PM
That all seems pretty reasonable. I must learn some patience :)