Possible Treatments for Pheo and Metastatic Pheo

Help compile info and experiences around medications

feeds@yuku.com (AbejaTupelo) — Mon, 07 Sep 2009 00:11:24 GMT

Hi all! I would like to ask that we start a topic--or series of topics--where people give their experiences with the medications that are used both to combat Pheo and to control its symptoms. I'm not sure how it could be organized: It could just be one long tangled thread (as so many people's experiences with a cocktail of drugs can't be unraveled). I would prefer it separate into:
1) Preoperative and symptom management drugs: alpha-adrenergic antagonists, Beta-adrenergic...

Gamma Knife

feeds@yuku.com (chell) — Thu, 27 Aug 2009 15:40:42 GMT

Has anyone had any experience with gamma knife treatment? How successful was it? what was involved etc.
I have been to see my oncologist today and she is toying with the possibility of this on my spine.

Treatment of Malignant Pheochromocytoma. 2009 article

feeds@yuku.com (tues1day) — Tue, 25 Aug 2009 06:22:44 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 malignancy frequency of approximately 10%. Only the presence of distant...

Radiation after MIBG treatment

feeds@yuku.com (Vonnie) — Sun, 09 Aug 2009 10:16:42 GMT

I had seen some information somewhere but now can't find it on the benefits of radiation on trouble spots in the bone even after MIBG treatment. It had said it was useful to have radiation on spots after the MIBG treatment. Has anyone ever heard this information?? Is it still necessary?? Any info would help. Thanks, Yvonne

Chemoembolization for metastatic pheo??

feeds@yuku.com (kimberly) — Mon, 16 Mar 2009 12:23:58 GMT

Hey- I was wondering if anyone has considered/heard of chemoembolization (chemo directly to the liver) for metastatic pheo. I did some research on it at hopkinsmedicine.org and it showed that people with carcinoid tumors are good candidates. Since carcinoid is a neuroendocrine tumor I thought this would work for pheos as well. I have been trying to reach the oncologist at Moffitt that I went to see but haven't heard back yet. In the meantime, I just wanted to check and see if anyone has...

Radiolabeled DOTATOC

feeds@yuku.com (tues1day) — Wed, 04 Feb 2009 20:37:58 GMT

This topic is for info and research articles concerning Radiolabeled DOTATOC

research articles concerning Sunitib/Sutent treatment

feeds@yuku.com (tues1day) — Wed, 04 Feb 2009 19:34:03 GMT

This topic will be for research information and articles concerning Sunitib/Sutent

CVD treatment (cyclophosphamide, vincristine, and dacarbazine)

feeds@yuku.com (tues1day) — Mon, 26 Jan 2009 15:00:40 GMT

This topic is for research articles reporting on the long term studies of malignant peochromocytoma/paraganglioma patients who have been treated with CVD chemo

Targeted radiation

feeds@yuku.com (slmullen) — Mon, 22 Dec 2008 19:21:08 GMT

Though I'm not far away from needing a return trip to Duke for another MIBG experience, I have a lesion in my left shoulder that I'm going to start receiving radiation on tomorrow in my hometown hospital because it's causing me trouble now. Sounds like it's ten very brief visits and they expect to knock the lesion flat. What can I expect from this as far as side effects? How effective is radiation in killing off these lesions?

UPENN for MIBG treatment ?

feeds@yuku.com (kimberly) — Wed, 10 Dec 2008 12:06:16 GMT

I thought I should start a new topic.... Does anyone know anything about UPENN being a resource for MIBG treatment? Has anyone gone there? Thanks in advance, Kimberly

Special Diet?

feeds@yuku.com (kimberly) — Sun, 07 Dec 2008 07:02:18 GMT

Hello All,

I am new to this site and have already gotten some wonderful support! Thank you so so much. I was diagnosed with metastatic pheo on Nov. 14th. I originally had a pheo almost 21 years ago.
I have asked a couple individual memebers some specific questions about treatment, but now I have a more general one. For the metastatic pheo people, do you follow a special diet? I am not a health food nut. I eat plenty of fruits and veggies but enjoy junk food too. I also like my...

Sunitinib/Sutent for metastatic pheo?

feeds@yuku.com (GinaRanae) — Fri, 31 Oct 2008 10:39:49 GMT

I have been fighting extra-adrenal pheo off and on for the past six years, and have had four major surgeries, radiation, radio-frequency ablation of the liver, and chemo (twice). I have just learned that the second round of chemo isn't working, and my oncologist seems optimistic about starting me on a drug called sunitinib (marketed by Pfizer as Sutent). This drug is currently being used for advanced renal cell carcinoma and gastrointestinal stromal tumors. Does anyone have information on...

natural therapies helping me

feeds@yuku.com (roseglass) — Sat, 25 Oct 2008 11:35:00 GMT

I've been trying some natural therapies to relieve my symptoms and I thought I would pass on the information in case anyone may be interested. First, just a reminder - I have a left adrenal tumour (also 2 on liver), and secrete excess (2xs upper limit) norepinephrine - not enough yet to warrant surgery. The allopathic meds prescribed to control the norepinephrine caused very bad reactions. So, I've been trying homeopathics and am having very good results. Just a note - it is best to...

2007: Pheo: an update on genetics and management

feeds@yuku.com (tues1day) — Fri, 04 Apr 2008 09:00:18 GMT

Endocrine-Related Cancer DOI: 14 (4) 935-956
Copyright © 2007 by the Society for Endocrinology.

Pheochromocytoma: an update on genetics and management

Asterios Karagiannis, Dimitri P Mikhailidis1, Vasilios G Athyros and Faidon Harsoulis

Division of Endocrinology, Second Propedeutic Department of Internal Medicine, Medical School, Hippokration Hospital,...

2001 report: CVD treatment 15 year followup of 18 patients

feeds@yuku.com (tues1day) — Fri, 04 Apr 2008 08:11:59 GMT

Malignant Pheochromocytoma: Treatment of 18 Patients with Cyclophosphamide, Vincristine and Dacarbazine (CVD). 15 Year Follow up.

Meeting: 2001 ASCO Annual Meeting

Abstract No: 678
Citation: Proc Am Soc Clin Oncol 20: 2001 (abstr 678)

2007: malignant phaeochromocytoma and paraganglioma

feeds@yuku.com (tues1day) — Fri, 04 Apr 2008 07:50:03 GMT

Endocrine-Related Cancer 14 (3) 569-585
Copyright © 2007 by the Society for Endocrinology

REVIEW
The diagnosis and management of malignant phaeochromocytoma and paraganglioma

Alexandra Chrisoulidou1, Gregory Kaltsas2,4, Ioannis Ilias3 and Ashley B Grossman4

1 Department of Endocrinology and Endocrine Oncology, Theagenion Hospital, Thessaloniki, Greece
2 Department of Pathophysiology,...

Current Treatment of Malignant Pheochromocytoma: 2007

feeds@yuku.com (tues1day) — Wed, 05 Sep 2007 15:33:49 GMT

J Clin Endocrin Metab. First published ahead of print February 6, 2007 as doi:10.1210/jc.2006-1544
Clinical Review

Current Treatment of Malignant Pheochromocytoma

Authors
Tim Scholz, Graeme Eisenhofer, Karel Pacak, Henning Dralle, Hendrik Lehnert Ann N Y Acad Sci. 2006 Aug;1073:505-11

Courses of malignant pheochromocytoma: implications for therapy.

Sisson JC, Shulkin BL, Esfandiari NH.

Division of Nuclear Medicine, UH B1 G505D, Department of Radiology, University of Michigan...

New MIBG Study to be conducted at many locations!!!

feeds@yuku.com (tues1day) — Sat, 28 Apr 2007 19:05:43 GMT

Hi,

I was so excited and happy to notice the the new Phase1-2 MIBG sponsered by Molecular Insight Pharmaceuticals, Inc is going to be conducted at a number of great locations.

Please scroll down to the area of the bottom of the page to see the places where it is going to be offered.

Phase 1-2 Study of Iobenguane (MIBG) I 131 in Patients With Malignant Pheochromocytoma/ParagangliomaApproved Practice Guidelines

Radiopharmaceuticals for the Palliation of Painful Bone Metastases

14-1 PG: June 2004

PDF:
Summary