Pheochromocytoma Support Board

C Telopeptide (CTX) Tumor Marker

feeds@yuku.com (kurt) — Thu, 07 Jan 2010 23:37:22 GMT

hello all,

i recently had a followup blood test and after reviewing it, i wound up searching the internet a little to find out what CTX is? It seems like it's a tumor marker. I'm more accustomed to CGA aka Chromogranin A being used as a pheo marker. I also searched this forum, but it didn't come back.

does anyone have any additional information in regards to CTX and pheo's?

best,

kurt

Could this be a good sign??

feeds@yuku.com (chell) — Wed, 06 Jan 2010 16:35:40 GMT

As you can see by my signature i have a long history.
When i first discovered this had reappeared a year ago and with the new one being on my T3 vertebrae i was in agony.
I have had three lots of mibg through the summer and am waiting for the results of a 24hr urine tested at the moment.
The thing is i was hardly able to move initially with the pain and was on loads of painkillers, but lately have managed to reduce
them dramatically and the pain is so much better i am...

Important Notice

feeds@yuku.com (MaryPeebels) — Mon, 04 Jan 2010 23:05:06 GMT

This notice regarding our status as a non-profit organization is from our new Facebook page. We decided that it would be a good idea to have the same notice posted on this board. Although we are officially a non-profit organization, we do not solicit for donations.

"Our board has been operating THE PHEOCHROMOCYTOMA SUPPORT BOARD online for over a decade. We have never asked for solicitations and never will. Please know if you are being asked for donations or being solicited for...

MRI - contrast versus no contrast for pheo/tumour detection

feeds@yuku.com (yetanotherprofile) — Mon, 04 Jan 2010 13:36:50 GMT

My doctor ordered an abdominal MRI a couple of months ago because the ultrasound showed a 2cm mass above each kidney (and some sort of hypoechoic tissue within the left mass). Thanks to the Canadian health care system, I would have had to wait; my appointment was in February. So I paid to have a private MRI done... and got in within a week.

Anyway, from what I've read, it seems that contrast is often...

High epinephrine level plasma-free blood test... is this a pheo?

feeds@yuku.com (qhearts) — Mon, 04 Jan 2010 00:11:38 GMT

Hello... I am so happy I found this support board. I have been searching for information all week since my trip to the doctor informed me that my ephinephrine level came back high on my plasma-free blood test (I am pretty sure it was plasma free... I think it was serum(???)... because at the lab there was a problem... they did not have the plasma epinephrine test that he originally ordered so it had to be changed). He has now ordered a 24-hour urine metanephrine test which I pick up...

Newbie and unsure

feeds@yuku.com (SkipperH) — Sun, 03 Jan 2010 20:52:10 GMT

Hello, I'm currently seeing an Endo for numerous symptoms, fatigue being the worse and they discovered low cortisol. They did a STIM test and it was below what it should've been. The Doc started me on Prednisone 5 mg. Within two days my BP spiked to 180 / 110. I called him and he said to stop the Prednisone and call him Monday. My question is, if I had this Pheo condition would the Prednisone increase the blood pressure like it did? P.S. I do take a bp medicine now (Tarka) and my...

Testing the Site

feeds@yuku.com (BlackBoard Webmaster) — Sun, 03 Jan 2010 17:08:34 GMT

Testing formats on the site.

Our New Facebook Page-become a fan!

feeds@yuku.com (caseber) — Sun, 03 Jan 2010 15:06:51 GMT

http://www.facebook.com/pages/Pheochromocytoma-Support-Board/238291802255?ref=ts

Looking for Answers...

feeds@yuku.com (dangolf) — Fri, 01 Jan 2010 21:28:15 GMT

I have been reading this board for a while now and have posted one time. I am so lost and thought I would just post my story as I am desperately seeking answers. I am not really sure what I have. It started several months ago with me thinking I was having either a heart attack or a stroke. I would get chest pains, couldn't sleep, headaches, blurred vision, back pain, and these feelings of something being injected through my body. I ended up at the ER a couple times scared to death...

Questioning Doctor's orders

feeds@yuku.com (Darla) — Fri, 01 Jan 2010 15:57:48 GMT

Now that my kids are SDHB positive, I took them to see a doctor. They drew blood on Thursday for my two youngest for the plasma blood screening. They are going to do the 24 hour urine next week but here is my question: The order for the 24 hour urine only says for metanephrines, and the paper that came with it to give to the lab says something about the metanephrine-to-creatinine ratio and it gives reference levels for metanephrine, normetanephrine and creatinine but it doesnt say...

Happy New Year

feeds@yuku.com (MaryPeebels) — Fri, 01 Jan 2010 14:15:37 GMT

I've lost count, but I think this is our thirteenth year since we started out on another board with seven members, and within months grew to over thirty members. I want to wish everyone a happy 2010. I hope this year will be a better one for everyone, and one filled with peace, prosperity and a lot of happiness.

Finally saw a doc and have a few Q's

feeds@yuku.com (MrsJackson) — Mon, 28 Dec 2009 18:08:05 GMT

Hi I have only poseted once but finally got to see a doc and wanted to update. When I went in I told the doc I had been sick for over 6 months and I told him of all the trips to the er and all the symtoms. I than told him that I had a ct that showed a 8x5 mm nodule and than another with contrast that it did not show up on. When I had the ct with contrast I had blood work done twice 2 days apart and had some Q's about the results. I had a abnormally high neutrophilis a high nurtro...

Post surgery dizziness?

feeds@yuku.com (portenyta) — Mon, 28 Dec 2009 02:48:50 GMT

Hello everyone! So, I had a pheo removed on November 2008 and by March 2009 I started experiencing dizziness. At first it was just in bed, while turning around. Then, throughout the day. I didn't really make an effort to keep track of when/what would trigger it. All of the blood/urine tests are normal. I also started experiencing a bit of pain in the chest, but nothing like a pheo episode. EKG normal. BP normal. I, once again, started doing my own research. It...

How did the pheo's catecholamines affect your bowels??

feeds@yuku.com (sue1214) — Sun, 27 Dec 2009 18:04:33 GMT

I am being examined for possible pheo and do have POTS(which means that my catecholamines theoretically go up when I am standing, causing my b/p and heart rate to go up). Anyway, on my POTS forum, alot of posters have bowel issues, mostly from sluggish peristalsis. I can see that pheo and POTS have one thing in common--the elevated catecholamines. POTS is not constant, like pheo. So, I was wondering, do/did you pheo people have problems with sluggish intestines? I know I go in and out of...

Has anyone had hairloss???

feeds@yuku.com (Cherish1950) — Sat, 26 Dec 2009 19:52:07 GMT

Had my R adrenal gland removed August 3rd which was botched and I had a pheo attached started out as robotical went to hand assisted, ended up open 10 hours in sugery ended up in ICU for 4 days on a vent.. released on my 7th day.. I have a road map... and alot of swelling and lumps which I am still dealing with.. I want to tell you all you need to speak out and ask questions like have you ever done a Pheo removal they will tell you not many I encourage you.. NOT...

MERRY CHRISTMAS

feeds@yuku.com (CHUPPACHUPS) — Fri, 25 Dec 2009 05:50:09 GMT

For everyone on this board, I wish you a merry christmas and may all your dreams come true.

Trish

Looking For Advice

feeds@yuku.com (Shauna13) — Thu, 24 Dec 2009 21:14:15 GMT

Hello All ~

I want to apologize ahead of time for the long message…I will do the best to condense everything! I am a 39 year old Mother of two and am currently being "investigated" for a pheo. My symptoms began in March of 2008 with heart palpitations, rapid heart beat, dizziness, nausea, nervousness, shakes and this overwhelming...

New Member with Questions

feeds@yuku.com (txouwy) — Wed, 23 Dec 2009 15:21:38 GMT

Hi. I just now found this site and have many questions including if I really have pheochromocytoma. My symptoms started about a year ago which are palpitations, chest pain, short of breath, dizziness, nearly passing out, and ending up in the ER with my blood pressure 220/ (can't remember the bottom number) and my heart throwing PVCs. Basically the ER doc just thought I had uncontrolled BP and said to make an appointment with my family doctor. I have had every test there is to test my...

Y-90 as a treatment option

feeds@yuku.com (denis) — Tue, 22 Dec 2009 12:59:13 GMT

There has been some discussion of Y-90 recently and its attractiveness as a treatment option for people with pheos/paras. I thought I would take a look at any reported results and was able to find two studies.

The first was a German study entitled, "Peptide receptor radionuclide therapy (PRRT) for progressive, somatostatin receptor positive pheochromocytoma/paraganglioma," studied 7 patients and reported (for the Y-90 treatment in isolation of other treatments):
...