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-   Help and Resources for Hemangiomas (http://birthmark.org/board/forumdisplay.php?f=9)
-   -   Vinchristine anyone??? (http://birthmark.org/board/showthread.php?t=5661)

ruthless009 02-23-2012 01:55 AM

Vinchristine anyone???
 
My son is 21months and we've been treating his hemang, for 6 months now, tomorrow he gets a port place for vinchristne due to it being in his head and neck, if continues to grow through the treatment so far....they say too bit to operate. If anyone has used less please let me know how it effected the little ones and if it worked
Thanks

smurph 02-23-2012 02:56 AM

My cousin's son had a port for vincristine and everything went very well. He did not have a hemangioma though he had KHE which is different and I believe he finished the treatment around 1 year of age and is still being monitored now (he is almost 3)

Did your son have any treatment before 6 months ago? Or did he just start treatment then? I guess Im just wondering because you mentioned his birthmark is pretty big and on his head and neck. I was just wondering because as far as I know (and I'm NOT an expert) I thought that hemangiomas grow for about a year (generally speaking) and then start to involute slowly at that point and it just seems a little unusual to me that his hemangioma would still be growing even though it is being treated and he is 21 months old. Maybe some other people will have more insight into this and they will chime in. Sometimes more complicated "hemangiomas" are difficult to diagnose....not that I'm saying that's true for your son, but I guess I was just curious what he has had for treatment and where he was going, etc.

Anyways, I wish you the best of luck. Like I said, although it was nerve-wracking for my cousin, her son did well with the port and the medicine. I hope everything works out well for you! Keep us posted!

Shannon

smurph 02-23-2012 03:01 AM

Hi! I just read your other post in a different thread and I wanted to let you know that I'm happy to see you are getting a second opinion from Boston Childrens. That's where my daughter went and also my cousin's son (who I mentioned in my previous post.) He has a much rarer birthmark called KHE and they had a fabulous team evaluating him there. Since it seems like your son's hemangioma is complicated, I think it's a great idea to get another opinion. I know they they have great doctors in Boston and hopefully they will be able to give you more information and be able to answer some questions for you. Keep us posted on what they have to say!

Shannon

ruthless009 02-23-2012 11:00 AM

It was a very faint blueish mark on his lip and tongue when he was born. They watched it and told me it would stop growing at a year and go away. It was at 15 months they finallly decided it hadn't stopped growing and we should start treating. We start proprananol and a steriod for the first month. We stopped the steriod and stayed on proprananol. A lump grew under his tongue in the meantime that is connected to everything in his cheek. and it was still growing, so we met with a plastic surgeon. They ordered imaging which is when they discovered it is also into his neck and on a vocal cord. So due to the proximity of the airway they want to try and stop it. They continue to tell me it will go away as he gets older, which is frustrating. From looking around it presents like a kaposiform, which is why I choose boston they seen to see these the most.

I'll keep you guys post and thanks for the replies

Ruth

smurph 02-23-2012 12:42 PM

Yes, I would definitely get a second opinion...like I said, I'm not a doctor, but it doesn't seem like the typical hemangioma to me at all. Where are you at with talking to Boston? I would also suggest you email one of the experts here on this site. They may be able to give you some guidance.

Shannon

ruthless009 02-23-2012 05:33 PM

port placement went well today, the doc is sending stuff out to Boston this afternoon she has a contact out there and has worked with them in the past. She has been very happy with the response they have gotten in the past. And they can bill my insurance for a 2nd opinion too.... so I told her if they want to see him I would have no issue going out there. I'm guessing from what I read this would be the next treatment option even from Boston, so we'll do this while they figure out what may be next.

smurph 02-23-2012 05:43 PM

Great! I live about an hour away from Boston, in NH so if you ever do come out this way and need anything at all, let me know and I'd be happy to help! Good luck with everything! :)

Shannon

nickbar 02-27-2012 03:45 PM

I would also suggest getting a second opinion. If you would like any help, please feel free to email me.

ruthless009 03-05-2012 08:00 PM

So the vinchristine that isn't suppose to make him sick is..grrrrrrrr

missy 03-06-2012 10:09 PM

oh ruth!

I'm so sorry he's ill. Here's hoping he feels better pronto! Anything we can do?

Missy


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