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10/13/08

Hello,

I have been diagnosed with a pheo. I had my left adrenal gland removed on 09-17-08. I am 42 years old and had no symptoms. Actually, my BP are low. They drew a lot of blood work which all came back normal. There are two 24 hour urines pending. They are suspecting MEN2.

After reading about your awesome sons, I have become greatly concerned. I have a 13 year old son. What were your son's symptoms? My son seems ok with exception of he can be a little emotional sometimes.

Any input you have would be greatly appreciated.

Thank you,

Greg

10/14/08

Reply from R and R:

Hi Greg, nice to meet you. We had never heard of this when Beaux got it. Here's the skinny on what went down: (I hope it's not too much info.)
1/07 Beaux woke up w/fever and severe abdominal pain. Hospital did a CT scan, which showed a 13x9mm left adrenal nodule. Pain got better in a couple of hours so we went home. Took scan report to pediatrician who said it's probably just a fatty tumor and it would dissolve on it's own - don't worry about it. So we didn't.
3/26/08 Same symptoms here. Hospital scan showed the nodule had grown. Transferred us to a bigger hospital in Dallas and Beaux had surgery. Surgeon said it was probably neuroblastoma. Testing revealed a pheo. They told us it was all gone.
4/30 Took him to Children's Hospital in Dallas for a 2nd opinion (thank God).
6/17 Had scans that showed there was still a little pheo left where the adrenal gland had been.
7/10 More scans. Found 2 more little dots on scan.
7/23 Saw doctor. Told him Beaux had a little abdominal discomfort, but it could be because we had been camping and maybe he got a little stomach flu from gulping river water? Doc said not likely related to pheo. Were setting up something for surgery.
7/25 Beaux had severe abdominal pain again. We were transferred from that hospital to Children's in Dallas. Unfortunately, somewhere along the way, the pheo has metastisized. Doc put us on neuroblastoma chemo. Was a 50/50 result. Not good.
9/-Now He's been on the CVD regimen plus thalidomide and doxorubicin. Had a scan on 9/24 that showed it had shrunk by 1/2. Continuing with chemo.
I'm really not sure why I gave you all that unnecessary information? The point is, I would have your son tested for sure. It's unlikely he'll have it, but it's best to be sure. Beaux didn't have any symptoms either. Looking back on it I realize he did complain he was hot a lot. It was a joke with us since we'd be freezing and he'd be hot. Sometimes he had a headache (more than normal I'd suppose). And sometimes he did go on a surprising emotional jig. I'm not sure if that's related or not, but it can be a symptom.
Point being, I would for sure have your son tested. The likelihood is very minimal, but it's worth finding out for sure. It'll ease your mind.
Good luck! -Renae

By the way, how did you find out about yours?

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Greg

101 Points

10/13/08

Hello,

I have been diagnosed with a pheo. I had my left adrenal gland removed on 09-17-08. I am 42 years old and had no symptoms. Actually, my BP are low. They drew a lot of blood work which all came back normal. There are two 24 hour urines pending. They are suspecting MEN2.

After reading about your awesome sons, I have become greatly concerned. I have a 13 year old son. What were your son's symptoms? My son seems ok with exception of he can be a little emotional sometimes.

Any input you have would be greatly appreciated.

Thank you,

Greg

10/14/08

Reply from R and R:
Hi Greg, nice to meet you. We had never heard of this when Beaux got it. Here's the skinny on what went down: (I hope it's not too much info.)
1/07 Beaux woke up w/fever and severe abdominal pain. Hospital did a CT scan, which showed a 13x9mm left adrenal nodule. Pain got better in a couple of hours so we went home. Took scan report to pediatrician who said it's probably just a fatty tumor and it would dissolve on it's own - don't worry about it. So we didn't.
3/26/08 Same symptoms here. Hospital scan showed the nodule had grown. Transferred us to a bigger hospital in Dallas and Beaux had surgery. Surgeon said it was probably neuroblastoma. Testing revealed a pheo. They told us it was all gone.
4/30 Took him to Children's Hospital in Dallas for a 2nd opinion (thank God).
6/17 Had scans that showed there was still a little pheo left where the adrenal gland had been.
7/10 More scans. Found 2 more little dots on scan.
7/23 Saw doctor. Told him Beaux had a little abdominal discomfort, but it could be because we had been camping and maybe he got a little stomach flu from gulping river water? Doc said not likely related to pheo. Were setting up something for surgery.
7/25 Beaux had severe abdominal pain again. We were transferred from that hospital to Children's in Dallas. Unfortunately, somewhere along the way, the pheo has metastisized. Doc put us on neuroblastoma chemo. Was a 50/50 result. Not good.
9/-Now He's been on the CVD regimen plus thalidomide and doxorubicin. Had a scan on 9/24 that showed it had shrunk by 1/2. Continuing with chemo.
I'm really not sure why I gave you all that unnecessary information? The point is, I would have your son tested for sure. It's unlikely he'll have it, but it's best to be sure. Beaux didn't have any symptoms either. Looking back on it I realize he did complain he was hot a lot. It was a joke with us since we'd be freezing and he'd be hot. Sometimes he had a headache (more than normal I'd suppose). And sometimes he did go on a surprising emotional jig. I'm not sure if that's related or not, but it can be a symptom.
Point being, I would for sure have your son tested. The likelihood is very minimal, but it's worth finding out for sure. It'll ease your mind.
Good luck! -Renae
By the way, how did you find out about yours?

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