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metastatic paraganglioma

mitzi100
Posts: 4
Joined: Jun 2006

Looking for info on treatments and research for metastatic paraganglioma for my husband. He has no uptake for MIBG treatment. Does anyone have contact info for help in Rotterdam? Any helpful information would be greatly appreciated.

TereB
Posts: 288
Joined: Apr 2003

Univ of Pittsburgh Cancer Institute has done some research and treats patients with paragangliomas in the head and neck area, not sure about adrenal types. Check the UPMC Cancer Centers website (don't have address). For info, check with Mary Jo Tutchko, Coordinator, UPCI Paraganglioma Program tutchkomi@upmc.edu to see if they are still doing research.

There is a sort of new type of radiation (I had it last year) that seems to work best on glomus tumors. The name is Stereo Tactic Radiation Therapy. It is more localized, nothing like regular radiation.

What do you mean by no uptake for MIBG treatment? I have mets all along spine and bones and I've had rad several times. The tumor does not disappear but it shrinks enough so it doesn't cause pain and it encapsules tumor to reduce/prevent growth.

I know someone who had treatment in Rotterdam but his tumors are still there. I'll see if I can get address for you. Treatment was radiation, can't remember what kind.

The only chemo drug available is old and only shrinks the tumors, I think the name is Gemcitabine, can't remember for sure.

What kind of paraganglioma your husband has?

TereB
Posts: 288
Joined: Apr 2003

Hi Mitza,
I have some more info. The person that had treatment in Rotterdam, had radioIV therapy. Radiation administered with IV. It stopped growth of tumors.
The SBRT radiation I had is similar to IMRT (intensity modulated radiation therapy) and it is done with IV.
Apparently research in Univ of Pittsburgh ended too, last year. They can see anyone with paragangliomas even if it is not familial. Dr. Bora Baysal was doing the research. baysalb@mwri.magee.edu

TereB
Posts: 288
Joined: Apr 2003

One more thing, Rotterdam study was closed to foreigners last year.

barosebud
Posts: 12
Joined: Oct 2003

Hi,

I haven't been on this website for a while, but have a husband with met. paraganglioma (dopamine secreting) He had the treatment in Rotterdam in 2003 and is doing quite well. I have a link to their website and though I was told that it is closed to foreigners, I really don't know that first hand. Please email me and I will get you lots of good information on this disease. Good Luck...I will wait to hear from you. Beth

kate100's picture
kate100
Posts: 7
Joined: Jun 2005

I hope your husband is doing well. I have metastatic abdominal paraganglioma (34 yrs old). I just returned from Basel, Switzerland where I received my 2nd treatment of y-90 radioactive labeled isotope. It is not a cure but I can tell you that I feel 98% better than I did before my first treatment. If you would like info. on the referring doctor or on the treatment, please feel free to email me.
Best of health!
Kate100

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