Vinchristine anyone??? - Page 2 - Vascular Birthmarks Foundation Forum
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  #11  
Old 03-08-2012, 02:26 PM
ruthless009 ruthless009 is offline
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Still waiting to hear form Boston Children's, hoping by the end of next week, we're getting feenerek? this week to help with the nausea, and hopefully I can keep the fever down. At least I'm able to plan now and know what to expect
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  #12  
Old 04-16-2012, 07:11 PM
ruthless009 ruthless009 is offline
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Boston said that we should do scherotherapy.... so we're off everything else at this point in time..... meet with the doc here, going with the doc that Boston recommendded in Chicago
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  #13  
Old 04-17-2012, 02:36 AM
smurph smurph is offline
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Glad to see you heard back from Boston...did you just hear back now? Hopefully this new line of treatment will help him. Did they say why they would prefer this treatment? Is your son feeling better now? I hope so. It's so hard to see your child not feeling well....especially nausea; that's the worst!! Thanks for keeping us posted. I wondered how you guys were doing.

Shannon
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  #14  
Old 04-18-2012, 02:16 PM
ruthless009 ruthless009 is offline
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Boston said this is how they would treat it and yeah we heard back last week. Met with our guy here and he said he has never seen such a tough case since it wraps into his vocal cords and pressing on the airway. We had a bit of an eye opening experince in that this is way more serious then we were lead to beleive. I have already been in contact with Chicago and they should have a plan for us by end of next week. I think this will be our answer I just feel so have he has to go through all of this. It may mean a trach and some time on a ventilator due to the region and swelling that can occur... that scares the crap out of us. But I know they will do a good job and we'll get through this.
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  #15  
Old 04-18-2012, 04:54 PM
smurph smurph is offline
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Wow! That is scary. I'm sure your new team of doctors will be a big help. Out of curiosity, do they still continue to say it is a hemangioma or did they say it was something else??...I thought I remembered you saying that it was still continuing to grow when he was almost 2, so I was just wondering if they said anything about that at all. I wish you the best of luck. Let us know what you hear from Chicago. I'll be thinking of you!
Shannon
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  #16  
Old 05-02-2012, 12:31 AM
spaatz1329 spaatz1329 is offline
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My daughter is using vincristine as part of her chemotherapy cocktail. It's shrunk her hemangioma so much we are weaning off the propranolol, but the side effects are intense!
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Jamie
Ellie- born 5/24/11
Forehead Hemangioma, Finger Tip Hemangioma
Large Diaper Area Hemangioma w/ PELVIS Syndrome
Tethered Spinal Cord, Bladder Exstrophy/Cloacal Anomoly
Diagnosed with Rhabdomyosarcoma 3/19 begins 46 week Chemotherapy treatment 4/9
On Propanol 1.4mL/3 times daily
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