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Radiation or Avastin?
September 30, 2011
9:44 am
mcarrigan
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Forum Posts: 2
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September 28, 2011
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Has anyone tried radiation with success? Avastin? My son is 3 yrs old and has been in the PICU since August 31. We got the diagnosis of diffuse lymphangiomatosis about a week later and are trying everything to save our little boy. He is on both interferon and rapamycin(sirolimus) but we aren't seeing the improvements we have hoped for. Our team is amazing and looking into every feasible alternative. The two therapies that seem the most promising are radiation or avastin. Has anyone tried either? Thanks and God Bless!

Meghan Carrigan

September 30, 2011
9:44 am
Jack Kelly
Moderator
Forum Posts: 63
Member Since:
September 28, 2011
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Dear Meghan,

We are so sorry to hear of your son's diagnosis and his current condition.

(I sent you a private message – if you have not received it, please contact me at jkelly@lgdalliance.org).

Jack Kelly

September 30, 2011
9:44 am
Cindy Wei
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Forum Posts: 17
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September 28, 2011
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My daughter tried avastin for one dose. It didn't work. The pleural-venous shunt (Denver shunt) finally saved her. I can understand your situation. Hang on. Things will get better. You son is in my prayer.

September 30, 2011
9:45 am
dirk ibsen 812
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Forum Posts: 4
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September 28, 2011
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I received Cobalt radiation for my LYMF in my spine and lymph about 35 years ago and it evidently stopped the destruction.

September 30, 2011
9:45 am
peaches
Pennsylvania
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September 28, 2011
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where in your spine did you see problems. I'm going to see an ortho who specilizes in the spine on June 10,2011. I'm been having problems with numbness and tingling in my arm and hand. They think it is from the cervical spine. I have lesions in the c3,c5 t2, and t5

September 30, 2011
9:45 am
dirk ibsen 812
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September 28, 2011
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The destruction of bone was in the lumbar area,top of pelvis and bottom rt rib

September 30, 2011
9:45 am
peaches
Pennsylvania
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Forum Posts: 24
Member Since:
September 28, 2011
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Would you mind telling what kind of pain you felt?
I am missing my last lumbar vertebrae it never grew altogether.
This in return causes me lower back and leg pain, It hasn't bothered me for awhile.

I've been obsessed with the web site because I'm scared to death to see this new doctor. I know that I'm bored out of my mind because I'm used to working 50 hours a week and i'm not working right now. I have trouble driving.

September 30, 2011
9:45 am
dirk ibsen 812
Member
Forum Posts: 4
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September 28, 2011
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I had general lower back pain. When it progressed, it would become severe enough that when I'd sneeze I would collapse.

September 30, 2011
9:46 am
fangyi
Member
Forum Posts: 5
Member Since:
September 28, 2011
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Hi,
I took Propanolol for weeks. There is a case report in Japan that the patient took Propanolol and the pleural effusion was under controlled. I hope that also works on me.
Is there anyone taking the same medication?
In addition to pleural effusion, ascites also leak from the vagina like menstruration and it really bothers me a lot.
Is there anyone havine the same symptom? does Denver shunt work on this situation?

FY

September 30, 2011
9:46 am
Annie
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Forum Posts: 12
Member Since:
September 28, 2011
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10

Hi I hope this new medication is working for you. I have fluid around my lungs and would love to be kept up to date with this. I will talk to my specialist about this.
Good luck Annie New Zealand

Annie

September 30, 2011
9:46 am
Cindy Wei
Member
Forum Posts: 17
Member Since:
September 28, 2011
Offline
11

Fangyi,

I also read that Japanese report. That boy had very high VEGF level. And the propranolol dosage was started at 0.5mg/kg/day, gradually increased to 4mg/kg/day. The 8-month progress is really amazing. I hope it works for you too. I will show my doctor the report. Please let us know your try out result.

Thanks,
Cindy

September 30, 2011
9:47 am
aussiedad
Member
Forum Posts: 12
Member Since:
September 28, 2011
Offline
12

Hi Fangyi,

My little Girl Claire has been on Interferon for the last 20 months and things have been OK up untill a couple of weeks ago. We have noticed a change in her breathing etc and went to our specialist for a review. Seems we have some fluid collecting around the lungs again ( previous as per the New on the Block thread on other pages). Our doctors have started Claire on the propranalol. I was keen to see how are you going, and if you have had much success. Claire ( she is 4 now)also gets very tired very quickly during the day. Have you had any similar effects.
I would be very keen to hear from you

regards

Aussiedad

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