second round of cytoxan?

• By johnh
• Posted June 1, 2008 at 5:28 am

I'd like to know too. I had 4 years without relapse from a 9 week cytoxan treatment. My nephrologist and I have entertained the option from time to time. As you probably know they have a chart that estimates save lifetime treatment. My daughter at that age was still wearing tutu's to school and was a true believer in Santa Claus. I wonder, since this is about weighing various risks and benefits how do you include your daugther in the decision making?

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• By hope4health
• Posted June 1, 2008 at 9:13 am

HI John,

I've never heard about that chart. Can you please tell me more? Is it a risk/benefit thing?

I've had MCD since 3/07 and have had no remission yet even though I've been on prednisone full bore, cyclosporine and now cellcept. My last 24 hour urine revealed 9 grams spilling. It just seems to keep getting worse.

Thank you,
Michelle

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• By s-nathan
• Posted June 1, 2008 at 9:19 am

Go to www.pubmed.org and search for "Beneficial effect of second courses of cytotoxic therapy in children with minimal change nephrotic syndrome" published in (journal) Pediatr Nephrol. 1988 July

You can also see which other scientific articles published later reference the above article....that will lead you to other materials / publications

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• By s-nathan
• Posted June 1, 2008 at 9:36 am

Duker
Have you discussed Rituxan or Rituximab with the doctors? There are recent publications indicating that Rituximab may be effective in certain patients.

At www.pubmed.org searchfor "Rapid remission of steroid and MMF-resistant minimal change nephrotic syndrome after rituximab therapy" in (Journal) Nephrol Dial Transplant. 2008 Jan

After the search gives you results, it will show related articles on Rituxan and MCNS on the side

Best wishes

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• By duker
• Posted June 1, 2008 at 5:08 pm

Hi s-nathan,
that link was very helpful. I found much information- but for some reason was unable to pull up the exact abstract on the rituximab. Yes, this has been up for discussion over the last 6 months. of course, the black box warning frightened us, but we are getting closer to that option.

she is very steroid toxic. she is currently on prograf/pred and MMF. MMF seems to be a placebo- on 200mg 2x/day and she has had 1 UTI from it, and just had asymptomatic strep (which ALWAYS hits her kidneys hard) and they are blaming the reduced immune system due to the MMF - eventhough she is carefully followed and her WBC have been just fine. SHe has always proven to be an enigma.

Long Island Jewish is a very respected ped neph hosp and I saw that Dr Tractman supported MMF for steroid dependent MCNS- I wish I could have brought up the cytoxan (1988) article too! I will see if one of my friends will have more luck pulling it up!

We are at Johns Hopkins in Baltimore and I know my neph team is doing very good research and taking calculated risks - I just want to hear a real success story verbatim from 2nd round cytoxan OR rituximab!

Thanks SOO much for your help - I will keep that link handy!!

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• By duker
• Posted June 21, 2008 at 10:37 am

sad news. we were hoping she did not have the lifetime max. dose of cytoxan with her first go around, but she did.

they will not go another round - very high rate of ovarian cancer....

so, right now she is holding her own on pred/cellcept/prograf. if she relapses again, it will be rituximab... creat is .2 and GFR is fine..... we will just have to wait and see

thanks all

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• By rulestein
• Posted June 23, 2008 at 8:47 pm

I believe the Rituximab side effects are blown way over exagerated because drug companies are afraid of lawsuits especially since this drug is being used off label so much. With Rituximab, there is a risk of some brain infection called Progressive multifocal leukoencephalopathy (PML). It turns out that all immunosuppresive drugs can cause this fatal disease including the ones that your daughter has already tried. The wikipedia page on this disease has some interesting facts. "86% of the general population presenting antibodies" for PML.

Also look up the statistics for cytoxan. I found out 18 years after I tried cytoxan that I was supposed to be getting an annual screening for bladder cancer.

Anyhow, I just finished a Rituximab treatment after 23 years of MCD. So far things are looking good, but it is still a bit early to tell for sure.

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