My son was diagnosed with OMS shortly after his NB diagnosis. I have been told that children with OMS tend to have less life threatening disease. Is true? My son's cancer had spread to all but a few bones and had created another tumor in his head by the time they found it.
I am so sorry you have to face both of these awful diseases.
We were told something similar when our son was diagnosed. Braeden had stage III, n-myc amplified, unfavorable histology, poorly differentiated nb. As far as we know he was the only high-risk nb patient at that time also presenting with OMS.
Some questions I would ask...who diagnosed the OMS? Is the other tumor in his brain? I ask because cns nb often resembles OMS in some symptoms, but true diagnosis of OMS can only be made with a lumbar pucture and b- and t- cell analysis of the spinal fluid.
The reason children with OMS tend to do better when they have OMS is believed to be for two reasons: 1-usually lower stage disease; and 2-immune system fighting the cancer.
You do not mention what stage/risk category your son is. Unfortunately in our case, that theory did not pan out, as Braeden's nb was highly aggressive and he passed away in April. I will add that because he followed the high-risk treatment protocol, the OMS was very well controlled after once cycle of chemo and he never had any breakthrough or relapse OMS symptoms.
I pray you and your son have a very different experience.
Praying, with hope,
Dawn
~Dawn~
Mom to my Super Hero Braeden in Heaven (dx NB III & OMS 5/15/07, relapsed 8/08 and 11/08, alive eternally 4/18/09)
Honoring Braeden's bravery, Fighting neuroblastoma
Joshua 1:9
Lukas was Stage 4 Intermediate Risk, no amplification, favorable histology. He did have the adrenal tumor and another tumor in his skull base, but luckily not IN the brain. I'm sorry to hear your son had a poor dx and OMS on top of it. Lukas was on IVIG while going through his treatment for the NB, chemo didn't help, he just finished his Rituxan in March and is doing 8 months of steroids. The IVIG helped control symptoms while he was in therapy but after the first dose of Rituxan we saw huge change in his eyes dancing and his balance overall and it's gotten much better since finishing the 4 doses and the following steroids.
Sorry for the delay in getting back here. It brings a smile to my face to hear that some meds have helped. I know several families who have kids with OMS who are still fighting. They are NED in terms of nb, but the OMS persists and relapses nonetheless. It's good to hear Lukas is doing better. I also like to hear the other good news....no amp., favorable histology....in a dark dx, some silver lining is good! Have you all been to the Myoclonus Center at Southern Illinois University? Our neurologist sent us there after we were discharged from Bub's first chemo. They are excellent with OMS (www.omsusa.org). SInce you said chemo didn't help Lukas' OMS, I was wondering-did he have cytoxan? Usually this is a good anti-b cell chemo and used for nb and OMS both. (Curious still about OMS, it's such a mystery.)
Continuing to pray for Lukas, and your family, with hope,
We talked to Lukas doc about going to see Dr. Frazatelli, but decided to stay in TX. She has treated OMS children before and has done everything we would have had done in IL. Lukas did have Cytoxan a couple of times during his chemo regimen and we didn't see much of a difference with it, but he also had the huge tumor in his sphenoid cavity still, so I don't know how much of that affected the response of the Cytoxan on the OMS. We might have to go that route again later on though. Right now he's on the Rituxan/Steroid therapy- mine and my husbands choice over more aggressive, heavier drugs. We just ran into a problem with it though. We went on vacation for 10 days and part of that time was when he was due his monthly dose of steroids and we notices his eyes were dancing quite a bit more than they should. BUT the tumor in his head caused the optic nerve to have to grow around it and that alone caused issues with his eyes drifting and not focusing due to a little lack of tension of the nerves, but then again we might just be controlling the OMS while on therapy and not actually putting it into remission.
But I would always rather deal with this than the NB. Thank you for your prayers, and know we will continue to pray for you and your family :)
Heather
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