My 23 month old may start to get interferon shots if her plexiform neurofibroma starts to grow again. She has one in the orbit of her eye which increased in size from her 2nd-3rd MRI but then barely grew from her 3rd-4th MRI. So, we decided to wait on beg. the interferon treatments for the time being. She can't have the "tumor" removed because it is wrapped around her optic nerve so she would probably loose vision in her eye if a surgeon tried to remove it. So, what I am wondering is whether there is anyone else on this site who is in this same or similar situation or if there is anyone who has ever had interferon "treatments" to try and shrink a plexiform neurofibroma??? Apparently, these treatments won't necessarily shrink the tumor but they might. Also, my daughter will have to have them for two years and get them once a week and have flu like symptoms for that day. Should I do this? Any advice would be great. I love this site, even though a lot of what I read "breaks my heart" because I know my 23 month old has a lot of stuggles ahead of her. But, at least I can be happy for all she can do right now and that she is not developmentally behind in any way!!! Please let me know though if anyone on this site has tried Interferon shots. Thank you!!
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interferon
- By Macie
- Posted August 27, 2009 at 11:36 pm · 11 replies
- In NF1 and children
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- By patricksmom
- Posted August 28, 2009 at 6:45 am
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Macie,
My son has a plexi but hasn't had to have any Interferon shots. I know this doesn't help you but I just wanted you to know I was thinking of your little one. Keep us updated.
Amy
- By colliefan
- Posted August 28, 2009 at 11:38 am
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I was involved in a study at Duke taking the shots for a year; the chemo had no influence on tumor growth. At it did was to make me sick and deplete my bank account,
- By FWmom1
- Posted August 28, 2009 at 8:58 pm
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Hi Macie. I know exactly how you feel. My daughter (who will be 3 in September) is currently in a similar situation. She has an optic chiasm glioma that is also extending onto the optic nerves as well. She is closely followed by her neurologist, opthamologist, and now a neuro oncologist that specializes in brain tumors. We have discussed chemo. It would be 1x/wk ×72 weeks . The doc wants to wait until we see her opthamlogist in 2 weeks to checkn her vision again and if no change there then he wants to wait until her next MRI in October. He told us that if there was no change in vision and/or no tumor growth that he would not start the chemo. He said that sometimes the tumor will regress on its own and even if it doesn't shrink on its own that some people live with the tumor without ever having visual deficits. If your baby does need chemo it is less intense..our doc said that some kids didn't lose their hair and were still able to continue with normal routines (school, etc.). Where do u take your daughter? Does it have a NF clinic? I have had great experiences at Riley childrens hospital in Indianapolis . (They have a NF clinic there and are very up to date on new NF research as theu are affiliated with University of Indiana medical school)
Please know that u aren't alone!! We are all here for you! Keep us posted and God Bless!
-stephanie
- By FWmom1
- Posted August 28, 2009 at 9:00 pm
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Hi Macie. I know exactly how you feel. My daughter (who will be 3 in September) is currently in a similar situation. She has an optic chiasm glioma that is also extending onto the optic nerves as well. She is closely followed by her neurologist, opthamologist, and now a neuro oncologist that specializes in brain tumors. We have discussed chemo. It would be 1x/wk ×72 weeks . The doc wants to wait until we see her opthamlogist in 2 weeks to checkn her vision again and if no change there then he wants to wait until her next MRI in October. He told us that if there was no change in vision and/or no tumor growth that he would not start the chemo. He said that sometimes the tumor will regress on its own and even if it doesn't shrink on its own that some people live with the tumor without ever having visual deficits. If your baby does need chemo it is less intense..our doc said that some kids didn't lose their hair and were still able to continue with normal routines (school, etc.). Where do u take your daughter? Does it have a NF clinic? I have had great experiences at Riley childrens hospital in Indianapolis . (They have a NF clinic there and are very up to date on new NF research as theu are affiliated with University of Indiana medical school)
Please know that u aren't alone!! We are all here for you! Keep us posted and God Bless!
-stephanie
- By Macie
- Posted August 29, 2009 at 8:44 pm
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Thank you to everyone who has responded so far!! Is there anyone else out there who has tried Interferon shots to help shrink their tumor(s)? If so, was there any sucess? Is there anyone else who has or knows of someone who has a plexiform neurofibroma in the orbit of their eye that extends back into their brain?
By the way, I live in Gaithersburg, MD which is a suburb right outside of Washington, DC so we have access to Children's Hospital which as a NF-1 clinic and we have access to Johns Hopkins. We have only been to Children's Hospital so far. Our Opthomologist is with Kaiser and she is wonderful.
- By CindyLouWho
- Posted August 29, 2009 at 10:16 pm
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Macie, I sent you a friend request with some info...not sure how useful it is but thought I would pass it along anyway.
Cindy
- By Robtygart
- Posted September 27, 2009 at 1:32 am
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I had the Interferon shots, pluse I had high doses of accutane, I had this for only one year. I was 9 or 10 when I started I can't remember. I am 23 now.
I did have the flu like symptoms too, it felt like a bad flu but they were better the next day, but I was still not up to par. Don't judge every person the same, they might be different for your daughter.
the Interferon shots looked like they stopped the growth, but they did not shrink them.
The shrinking that did happen was due to the swelling going down from the sugary.
- By denfen
- Posted September 27, 2009 at 9:39 am
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The doctors were discussing to put my 1 year old son on interferon, but they decided to go with gleevec instead, probably because of less side effects.
We live in Scandinavia.
- By Robtygart
- Posted September 27, 2009 at 1:33 pm
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I was reading about Gleevec the other day, do you have any information on it?
Dose it shrink the tumors? Or just stop the growth?
- By joeysmom
- Posted September 27, 2009 at 3:54 pm
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There was some study recently about Bio30 from New Zealand that sounds hopeful with little side effects because it's a by product of beehyves or something like that.....http://www.nfinc.org/bio30.html
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