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Old 03-22-2003, 11:55 AM   #1
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Post Anyone with Pheochromocytoma?

I would be interested to hear stories of anyone with experience with pheochromocytoma - there isn't much on the internet about this...Thanks!

 
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Old 04-03-2003, 10:59 PM   #2
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Hi, I have just turned 27 and had a MAJOR heart- attack 5 Months ago.Since then I have been diagnosed with Pheochromocytoma and Antiphopholipid Antibody Syndrome (which is a blood clotting disorder) I was going to post a message on this board asking the same question.
All I know is that they are tumors on the adrenal glands, that excrete excessive amounts of adrenaline. I was Looking for ANYTHING else that it could be, other than Pheo, that produces too much epenephrine. Please let me know if you find any info about this disease. I am currently taking Phenoxybenzamine, for it. Is there anything else that can be prescribed that doesnt cost so much? I take 4 a day and it cost $749 a month. I have no insurance and I need help. Thanks for the post I was beginning to wonder if I was alone in this.

Best Wishes To All,
Fade

 
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Old 04-05-2003, 10:25 AM   #3
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Hi - I am so sorry to hear about your situation - having an illness is hard enough without having to deal with the financial burden. Here are a couple of websites that I have found to be very helpful re: pheos:


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[url="http://www.cancer.gov/cancerinfo/types/pheochromocytoma"]http://www.cancer.gov/cancerinfo/types/pheochromocytoma[/url]


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Old 04-05-2003, 12:55 PM   #4
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Am, Thanks so much for the reply. I deffinately will try these links. Do u have Pheo? If so how are u dealing with it, and what meds have they prescribed? I hope all is well. TC

Thanks again,
Fade

 
Old 04-15-2003, 05:43 PM   #5
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Fade - I actually am being worked up for a possible pheo. From what I have read up on this (although there isn't a lot on the internet about this) - the tumors can be somewhat elusive. I had a catheter ablation done about a month ago for a heart arrythmia and during the procedure I had very high bp. I also have a history of high bp - I am 26. I have tachycardia pretty much everyday, trouble sleeping, etc. I did the 24-hr urine collection and my normetanephrines are elevated but they are still not sure if it is a pheo. It's just very frustrating since until I get a diagnosis I am kind of im limbo. Were any of the websites I listed helpful??? Please let me know - - best of luck to you!!!

 
Old 04-15-2003, 11:57 PM   #6
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Hi Am,
Thanks for your reply. I hope all is well. Sorry, to hear about the undiagnosis. I know how it feels to have to wait and be told there is something wrong but they dont know what it is. I have actually had 3 docs say to me that their diagnosis was "Its a symptom of whatever You have",can u beleive that?
Have the docs said if there was anything else, that the elevated epenephirine could be? I am still very wary about my diagnosis considering they have yet to find them after an MRI and a abdominal U/S, now they plan to run a MIBG (I think that what its called) and an all over body scan. They are still persistent that they think PHEO is what I have. They say, that they think, the Pheos are very small and spread thoughout my body.
Thanks for the sites. They were very helpful! I still have a hard time understanding it. I would love for them to say see this IS what u have and know we can deal with it like this..... I truly understand how frustrating it can be to NOT know.
Did you have any risk factors, other than H/BP?
What is your diagnosis on your heart disorder? Do they think that it is the Pheo causing that?
Please Let me know how you are doing. I would love to hear from you.

Best Wishes to All,
Take Care ,
Fade

P.S. As you can tell I have a real hard time sleeping to. My freinds call me Insomni.

[This message has been edited by fadeawhile (edited 04-16-2003).]

 
Old 04-16-2003, 03:44 PM   #7
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Hi Fade -

Thanks for your reply. Other than my high bp (which I have had since age 7), my main symptoms are tachycardia, palpitations, and insomnia. The procedure I underwent for my heart was an electrophysiology study/catheter ablation for an arrhythmia. During the procedure I had rushes of adrenaline and high bp that were cause for concern. I have a history of heart surgery, having a congenital defect repair done years ago.

I had an MRI done of my kidneys 2 years ago which didn't show anything on the adrenals then. They haven't suggested what else could be causing the elevated normetanephrine and from what I have read the blood test is more accurate for catching a pheo. I have read about the MIBG scan you mention - I think it is better for catching pheos that are not on the adrenal glands which I guess is what they suspect you have?

So at this point I am just waiting to see the endo - luckily I am in Boston so I have ready access to some great doctors and hospitals. So I am hoping to rule a pheo in or out soon!

Is you MIBG scan going to be done soon?? Will surgery be soon after that if it can be done?

The insomnia is probably the most bothersome (although my racing heart drives me nuts!) - - I have nights where I maybe get 1 - 2 hours of sleep but the next day I am wide awake!! Guess it's that extra adrenaline in my system.

Please keep me posted on how you are doing - - these pheos are so rare!

 
Old 04-21-2003, 10:10 PM   #8
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Hi Am,
Sorry, I havent replied. We have had a very busy week here. My hubby's company has closed down and he was laid off, so we are moving. I will be back as soon as I can to post to you and let you know what the new docs say.
When will you know anything deffinate about your diagnosis? I was scheduled for the Mibg for early next month, but have postponed it. As of right now they think that the Pheos are to small to operate on. I have lymohnodes in my head around the cervical something, I cant ever remember the name. (they circle the back of my head and go from one temple to the other.) That keep swelling up off and on. Some are the at least half the size of a golf ball. The docs are going to byopsy them when they come back. I'm not exactly sure what they are, but maybe it has something to do with the Pheos. I have no idea.
I deffinately understand about not sleeping, but I always stay SOO tired. I just keep goin until my body just says thats enough and I just crash.
Goodbye for now. I hope all is well. I'll check in as soon as I can.
Take Care ,
Fade

 
Old 04-27-2003, 01:58 PM   #9
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Hi Fade-

Please do post again when you are able and keep me posted. I am scheduled for an MRI tomorrow to see if anything shows up on the adrenals. After that I am in limbo waiting for my endo appt but I think if something does show up on the MRI I may get in sooner.

Hope to hear from you soon!


 
Old 05-02-2003, 07:51 PM   #10
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Hi-
Another link through MEDLINE. Not sure if it will lead you back to the other one or not, but great info (I hope) on latest clinical trials etc. [url="http://www.nlm.nih.gov/medlineplus/pheochromocytoma.html"]http://www.nlm.nih.gov/medlineplus/pheochromocytoma.html[/url]

 
Old 05-03-2003, 10:07 AM   #11
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Thanks for the link - it does have helpful info - especially considering the limited amount out there on this topic.

Thanks again!

 
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