Anyone heard of Accutane for intermediate risk cases?
 

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11-06-09 10:39 PM
jgough
Anyone heard of Accutane for intermediate risk cases?
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My 15 month old daughter Beatrice is stage 4 intermediate risk.  After 7 cycles of chemo, which she responded well to, she had her debulking surgery in August where they were able to get about 80% of what remained of her tumour out.  Pathology showed that there was still microscopic activity, so we did the 8th cycle of chemo.  Now her oncologist wants us to consider Accutane.  It's not part of her protocol, and given that her n-myc is not amplified, theoretically, I don't see how Accutane is supposed to help...  I don't want to put her through more treatment than necessary, but I also don't want to feel like I didn't do everything possible.  But like I told my husband, this is why scientists determine protocols, and not mommy and daddy.  Anybody have any thoughts?  I appreciate any insight.

 Julie

11-17-09 02:38 PM
dawnie
Re: Anyone heard of Accutane for intermediate risk cases?
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Hi Julie, 

Personally, even though for our son accutane was horrid, I would do it.

First, if I can be blunt, I know three girls diagnosed with non-amp. n-myc nb around the same time. One is on her third battle with nb now, and the other two are gone. I believe you are right on with what you said, you need to feel you have done everything possible.  NB is one of those nasty diseases, you really can't predict it well.

Accutane for most kids does not have very serious side effects (for ours it did, but that is way outside the norm). They are very managable for most. Accutane is believed to force immature cells (neuroblastoma) to mature, rendering them harmless.  That's huge, considering it can hide so easily. I think for most the benefits outweigh the risks, so it's worth at least further examination.

It's tough when we have to make these kinds of decisions, praying for wisdom for you....

 

 

11-17-09 09:12 PM
jgough
Re: Anyone heard of Accutane for intermediate risk cases?
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Thanks for yourreply and the candid information.  It helps to hear from parents who have been through it, and knowing that you would still do it, even after what you've been through, speaks volumes.

 The pharamcist called us today to let us know we could pick up Beatrice's Accutane tomorrow, so we'll be starting her treatment on Thursday.

If you don't mind, the 3 girls that you referred to, do you know if they were intermediate or high risk?

 Julie

11-19-09 01:29 PM
dawnie
Re: Anyone heard of Accutane for intermediate risk cases?
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I am glad to know I wasn't too forward, sometimes I can be. :-)

The three ladies I mentioned, I believe two of them at least, were high risk. One is still alive, fighting for the third time, the other is not. The third I am not sure, because her mom told me that she was stage IV but had all the things that were supposed to give her a more favorable prognosis. Yet after two transplants and two relapses, she died. The clear lesson from what I have seen on our journey is treat to cure, don't hold back.  We can make educated guesses, but we don't really know what nb is going to do.

Praying for you as you begin treatment with accutane. All the procedures and instructions seem daunting, but it's easier than it looks! (We used starburst to get the taste, and little pieces, out! And milk chaser...always! :-)

 

 

11-22-09 09:58 PM
jgough
Re: Anyone heard of Accutane for intermediate risk cases?
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I appreciate the prayers.  I always tell people that we'll take all the prayers we can get!  So far, knock on wood, it's going well.  I've noticed a dry patch starting up on the bridge of her nose, so far, no big deal.  They trained us on how to extract the accutane from the capsules, but I figured, heck, let me just try popping them in her mouth, and it worked.  She's really into potato chips right now, so if she's not in the mood for her "vitamins", I tell her I'll give her a chip, and that's all the motivation she needs.  She's such a good little girl. 

11-23-09 12:47 PM
Snoopje
Re: Anyone heard of Accutane for intermediate risk cases?
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I am happy it's going well for accutane... for my daughter, I had to "fight" with her for hours each day.  We were told we couldnt extract it from the capsules... maybe it's different because your daughter is still young.

 

for the dry patches, we were told to apply glaxal base twice a day everywhere and to use Vit. E ointment on her lips.  But for the dry skin on her face (except around the mouth) I think Vit. E cream gave better results.

 Are you at Ste-Justine or Childrens? because I am from Montr?al area...

 best of luck for little B?atrice

 Julie

12-07-09 07:14 PM
jgough
Re: Anyone heard of Accutane for intermediate risk cases?
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Julie - Sorry, I didn't see your reply until now.  We're at the Children's.  Are you friends with Caroline Abboud? She told me that she had friends whose daughter Emilie was going through Neuroblastoma treatment when she heard about Beatrice's diagnosis, and I figured, there aren't too many of us in Mtl...

 That's weird that they said you couldn't extract the accutane from the capsules...  Beatrice is still a baby, so I guess maybe they figured we just didn't have an option.  She chews them up and swallows them, so far so good.  Do you know if it tastes bad?

 I'm using a combination of vitamin e oil and lansinoh (lanolin) for B?a's dry skin, and that seems to be working.  The doctors told us that accutane doesn't build up in the system like chemo, so it shouldn't get harder with each cycle.  Has that been your experience?

12-07-09 10:51 PM
Snoopje
Re: Anyone heard of Accutane for intermediate risk cases?
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Yes, I'm friends with Caroline, I almost asked you in my first reply lol

 What was harder is because ?milie is older, she knew what was coming.  Also it was like her skin "remembered" and dried faster and took longer to get better. Then again, at first ?milie was just chewing the capsules, and spitting out the skin. After the first 2 cycles, she would chew, then swallow.

 One of the side-effects in ?milie is that it gave her a really really moody-emo-angry teen attitude. Like full swing hormone type of attitude.  That attitude came out sooner with each cycle also.

 I think she was rebelling because until now, we had managed to keep almost all medical acts outside the home.  And as parents, we were not the ones doing those acts (all her meds went through her ng tube). It was like we were abandonning her or commiting treachery.  I saw a pedo-psychiatrist with her. He compared it to post traumatic shock disorder, just like soldiers back from Afghanistan.

 ?milie said it had bad taste. We had a few suggestion to make it easier for her. Some said if we hid the capsule in peanut butter or chocolate. With ice cream, whipped cream etc... Anything fatty was supposed to help a lot. But for ?milie, food and medication dont mix. Peanut butter goes with toasts, not accutane etc.

12-07-09 11:19 PM
jgough
Re: Anyone heard of Accutane for intermediate risk cases?
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I can relate to your post traumatic shock comment.  Beatrice is just at the age now where she realises that when she goes to the hospital, it's never fun.  A few appointments ago, they went to flush her port and she shoved the nurse who was coming at her with the needle.  I was mortified, but the nurse was great, said Beatrice can't talk, so this is the way she expresses that she doesn't want the needle.  She's also been different since her surgery in August.  She used to be a great sleeper at night, but after the surgery, she would wake up every 1.5 hours.  Our doctor said that we have to understand, she's just a baby and doesn't know that she's sick.  All she knows is sometimes when she goes to sleep she wakes up in intensive care!  That's enough to make anyone afraid to fall asleep.

I heard those suggestions too, mix the accutane with yogurt etc., but I think it would just be asking for trouble.  I'm better off just popping them in her mouth and getting it over with.  What if that day, she decides she doesn't like chocolate, then I waste a pill.  Or I'm stuck trying to convince her to eat something she doesn't want, on top of taking her pill.  Not fun.

 It's weird to say this, but it's helpful to me to hear that accutane could get worse as it goes.  At least I'll know what to expect.  The attitude thing is a bit hard to deal with, and unfortunately, the timing of this is bad.  I have to go back to work in March (my short term disability benefits run out), so I have to put Bea in daycare with 3 cycles left of Accutane.  It might make the whole daycare thing all the more traumatic....

 Emilie will be in my prayers tonight.

12-09-09 12:20 PM
Snoopje
Re: Anyone heard of Accutane for intermediate risk cases?
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I hear you for the daycare... tough moment.

 My family doctor put me on sick leave. D?pression situationnelle s?v?re (no idea how that translates). This way, I can stay with ?milie. When I went back to work, she also wrote a script saying I had to work part time etc. This way, it helped a bit. But now of course with relapse, I'm back home.