Hi I want to thank you for sharing your information, stories and support. The amount of help that is given between everyone here is inspiring and incomparable.
I had posted once before when my son's cancer went from being stage IVS to stage IV and no one had really ever heard of that. They (doctors and consults from Sloan and Texas Children's) decided that we had found the cancer early and it was never stage IVS but really IV.
Now it gets confusing again. Here is some of Scotty's history
Born Aug 2008. Right adrenal golf ball tumor diagnosed Sept. At 6wks stage 1 softball adrenal tumor removed completely all pathology/biology Favorable. 3months too many to count liver tumors, but no other spread. Suspicious tiny spot on arm bone. MRI follow up was completely clear. Appeared to be classic IVS. Only observation with Ultrasound and urine tests. At 7months of age MIBG/bone scan/MRI confirmed widespread bone mets to facial bones/skull, upper and lower arms, upper and lower legs, hips and marrow aspirations 1% from both hips. Liver biopsies showed all favorable pathology/biology again. Diagnosed stage IV intermediate. Started chemo in April 2009. Plan was to do 4 cycles since he is under a year. Then test to see if an additional 4 cycles would be needed.
Scotty completed 4 cycles of intermediate risk chemo with sodium thiosulfate for the carboplatin received. Current MIBG/Bone scan/MRI, shows there is reduction of tumors in liver, and some tumors throughout body had no change, and there are some NEW tumors and further GROWTH of existing tumors in some bone and nodules scattered throughout muscle and deep skin. No bone marrow was obtained this time but ribs and hips showed activity on MRI (not other scans). Also had tumors show up on MRI that did not light up on other scans.
Scotty's doctor is perplexed and has emailed/called 4 different institutions. We are waiting on opinions/info and not proceeding the next 4 rounds of chemo or biopsy until we get some additional information.
Has anyone ever heard of a similar case? Is this considered progressive? Any information and thoughts about this would be appreciated. Also if you have recommendations for treatment and facilities that would be great too!
Thank you for taking the time to read this, Julia