Collection of Metastatic Pheo Posts

FDA approved for Phase 2 Trial of Azedra March 2009

feeds@yuku.com (tues1day) — Wed, 25 Nov 2009 20:08:42 GMT

FDA approved for Phase 2 Trial of Azedra(TM), a Radiotherapeutic to Treat Neuroendocrine Cancer
Thursday, 12 March 2009 11:50 |
Communities - Neurology Brain CNS

http://www.medicexchange.com/Neurology
-Brain-CNS/fda-approved-phase-2-azedratm-radiotherapeutic-neuroendocrine-cancer.html

Study Of Sunitinib currently recruiting participants

feeds@yuku.com (tues1day) — Wed, 25 Nov 2009 12:49:41 GMT

Study Of Sunitinib In Patients With Recurrent Paraganglioma/Pheochromocytoma (SNIPP)
This study is currently recruiting participants.
Study NCT00843037 Information provided by University Health Network, Toronto
First Received: February 12, 2009 No Changes Posted

http://clinicaltrials.gov/ct2/show/record/NCT00843037

Treatment of Malignant Pheochromocytoma 2009 article

feeds@yuku.com (tues1day) — Tue, 25 Aug 2009 06:34:54 GMT

Horm Metab Res. 2009 Aug 11. [Epub ahead of print]

Treatment of Malignant Pheochromocytoma.

Adjallé R, Plouin PF, Pacak K, Lehnert H.
11st Department of Medicine, University of Lübeck, Lübeck, Germany.

Pheochromocytoma (PCC) is a rare disease, mainly sporadic, but also associated with some familial disorders, with a...

HIPEC (Hyperthermic Intraperitoneal Chemotherapy)

feeds@yuku.com (R and R) — Fri, 10 Jul 2009 14:00:17 GMT

Has anyone ever had HIPEC surgery before? My 13 year old son has had metastatic pheo since last summer. After a 3rd chemotherapy, his results are mixed and some tumors are even larger. He has tumors all over his abdomen and now some in his liver. Children's Dallas will not do surgery. I understand their thinking, why remove some tumors when they can't get them all?
However, we've been down to MD Anderson the last few months, and they do...

Why I Relay

feeds@yuku.com (cindy) — Mon, 25 May 2009 21:57:33 GMT

"Why I Relay"

By: Cindy Johnson Crawford

This past Friday night was our local Relay for Life. I always look forward to this event so much. Rick and I go and the kids and grandkids meet us there, we eat too much, play too much and have a lot of fun while supporting something very near and dear to our hearts. The...

Pheochromocytoma/ Paraganglioma Research Study Interview

feeds@yuku.com (victoriad) — Fri, 08 May 2009 09:30:11 GMT

Have you been diagnosed with pheochromocytoma or paraganglioma?

We are interviewing individuals to understand whether two questionnaires are appropriate for use with participants with these conditions.
For more information please call:
Oxford Outcomes Inc
Victoria- 240-482-0034 x. 26
victoria.divino@oxfordoutcomes.com

The interview would last approximately 1 hour and you will be reimbursed for your...

Pheochromocytoma/ Paraganglioma Research Study Interview

feeds@yuku.com (victoriad) — Fri, 08 May 2009 08:04:10 GMT

2009 International Patient Conference ?

feeds@yuku.com (AusieMum) — Sun, 01 Feb 2009 18:29:31 GMT

I have heard from two sources now that a patient conference is in the planning phase for Parsippany, New Jersey , September 30 - Oct 2. 2009. My son had been asked to consider attending.

I don't want to be jumping the gun here, but if people are planning their holidays, the earlier they know the better. Since we have heard about it here in Australia, I am wondering if anyone else on the support site heard about it?...

Thyroid solid masses

feeds@yuku.com (Scharla Johnston) — Fri, 30 Jan 2009 18:51:29 GMT

Hello, I had and ultrasound and doppler done of my throid today. They show 5 solid nodules, and the thyroid gland has a strange looking texture. I decided to have these done as the PET showed a large amount of uptake in the thyroid. So from PET, I have the thyroid solid masses, an enlarged lymph node in the right lower quadrant of the messentery, and calcification on the renal hilus. My previous Pheo was 10 cm, on the left adrenal 7 years ago.. I have had good news, my insurance approved...

Chromagranin

feeds@yuku.com (slmullen) — Fri, 16 Jan 2009 17:24:36 GMT

I'm looking to see what experiences people have had regarding what their chromagranin level was when they received MIBG. The first time I did MIBG three years ago, my chromagranin was approximately 11,000, now 3 years later it's back to that level. Dr. Gockerman at Duke indicated he had one patient that they treated when the chromagranin was over 100,000, but apparently it's rare to wait that long. So if anyone is willing to share what their levels were at the...

Good News

feeds@yuku.com (kimberly) — Thu, 08 Jan 2009 19:28:02 GMT

I am writing from Penn Towers at UPENN. I had my mibg scan and treatment today. Right before my treatment Dr. Pryma told me that the nuclear radiologist in Atlanta read my scan wrong. I do still have metastatic pheo, but it is only in my liver, NOT my rib, lower back and kidney. I have been elated and just praising God since hearing that.
Also, I finally have a course of action. Dr. Pryma wants me to go up to NIH in about six weeks and to come back for another mibg treatment in about 3...

MIBG treatments

feeds@yuku.com (nurse911) — Tue, 30 Dec 2008 17:40:41 GMT

Hi Everyone,

Just wondering if anyone knows how long one can recieve MIBG treatment? Is there a limit in terms of years? I had a pheo removed in April and have been recieving treatments at Cross Cancer in Edmonton, AB Canada. I have mets to my spine between T8 and T10. I have no symptoms except for occassional back pain. Does anyone also know how long you can live with mets? I know the studies I have read are very vague. All in all this whole thing really sucks!!!!! My life...

Genetic testing.

feeds@yuku.com (Scharla Johnston) — Fri, 26 Dec 2008 00:38:41 GMT

Hello, I have not been reading on the site for quite some time. I had a large pheo removed that was on my left adrenal gland, 6 years ago. As of late , I have been having some odd symptoms. I cant really describe them, only as I have blaring in my ears, sort of like when you try to yawn to get your ears to pop. It is strange, and of course makes me thing it could be another pheo. I had a CT last month, only of the abdomen, as I had a gallbladder removal surgery. The CT showed no...

Kidney pain from Pheo?

feeds@yuku.com (shannonwooten) — Wed, 24 Dec 2008 19:53:37 GMT

I am sorry if this post is in the wrong area.... I am not sure where this should be posted.....

I was wondering if anyone has every had kidney pain associated with Pheo? My mother had pheo for 4 years... she found out 2 years before she got pregnant with me and passed away when I was two..

I plan on getting some genetic testing done- to see if I carry the gene. I don't know if I should be worried since my mom had the whole time she was pregnant with me.

...

Looking for New Oncologist

feeds@yuku.com (kimberly) — Fri, 19 Dec 2008 14:01:21 GMT

Hello All,

I was diagnosed Nov. 14th with metastatic pheo. Since that time I have been to the Moffitt Center in Tampa to see an oncologist. He was nice enough, but I did not really connect with him. He recommended me for the Duke MIBG program. Through the this board, I found Karen Adams at NIH. Karen told me about the UPENN MIBG program. I am still waiting to hear if I am a candidate. In the meantime, can anyone tell me if you are seeing an oncologist with a lot of meta. pheo...

sunitinib as treatment for pheos, particularly VHL & perhaps SDHB

feeds@yuku.com (herrell) — Sat, 22 Nov 2008 20:39:35 GMT

Two publications have recently come to my attention that I think are worthy of our collective attention.

Can anyone comment on whether they have been the subject of a sunitinib trial?

http://www.ncbi.nlm.nih.g...ed/19001511?dopt=Abstract

Pheochromocytoma: Current Approaches and Future Directions

feeds@yuku.com (Peter) — Mon, 04 Aug 2008 21:55:58 GMT

Hi all, I found this to be a fairly clear and thorough overview. I hope it is of use to you. Peter (http://viewcourt.vcn.bc.ca/peter)
-----------------------

Pheochromocytoma: Current Approaches and Future Directions

Joel T. Adlera,*, Goswin Y. Meyer-Rochowb,c,*, Herbert Chena, Diana E....

MIBG

feeds@yuku.com (slmullen) — Sun, 11 May 2008 17:06:49 GMT

After having an MIBG blast 2.5 years ago, I just had some tests done and my chromogranin is on a slight upward trend. Without other symptoms, any idea when they the docs will recommend another blast of MIBG?

Steve

Demser

feeds@yuku.com (Unregistered(d)) — Wed, 16 Apr 2008 16:59:52 GMT

Has anyone taken Demser for pheo or paraganglioma? I'm wondering if anyone has long-term sedation from it. The internet says it lasts only a week...

Bone lesions and MIBG

feeds@yuku.com (laurab) — Tue, 15 Apr 2008 16:59:00 GMT

Hi all,
I'm back again with a status update. I went to UPENN on March 21 and had my MIBG treatment. I stayed one night in the hospital and everything in my room was covered in plastic... I mean EVERYTHING! It's hard to turn the volume up on the TV remote when it's encased in plastic. Anyway...

A week before I left I noticed two large bumps on my head. I found that funny because I didn't remember bumping my head even once, let alone twice. Turns out I have lesions in my skull, and...