malignant paraganglioma

barosebud said:

Hi Mitzi,

I haven't been on this website for a while, but I have a husband with met paraganglioma (dopamine secreting) My husband is not a candidate for MIBG either. He tested well for Octreotide, which got him into the LU-177 study. He was treated in Rotterdam in 2003. I have lots of great info to share with you and another website that may be of help to you as well.
Please email me, I will check back. I have a friend in the Netherlands whose wife is getting ready to undergo the treatment in Rotterdam. I will ask him to check on the foreigner status of this study. I'm headed to Hawaii with my husband until the 24th, but will try to check this site for a reply from you. We can exchange email addresses and share lots of info I have. I know several people with this same disease...don't give up hope!

Beth

Good evening or good morning!! my name is james and i also have met Para...dont like to say the word, sorry for the bad spelling and punctiation but iam in a rush.....i hope that you can find a way to share some of you info with me, you or anyone else...please if you can respond and let me know that this was recieved and we can start from there...thank you so much again and hope to hear from you soon...thank you and God bless....James

mrmcd4206 said:

Paraganglioma
I have metastatic paraganglioma. Tumors in chest, abdomen, lung, liver, spine, ribs. They are starting chemo next week. (CyVADIC). I was diagnosed about 6 weeks ago. I have no idea what to expect other than what I read on here.

Hi
Not sure if you are
Hi

Not sure if you are still on this site. But just in case, I have a site that will give you answers and hope. http://pheochromocytomasupportboard.yuku.com/

Good Luck!

My husband is a 7 year survivor with a great life

mrmcd4206 said:

Paraganglioma
I have metastatic paraganglioma. Tumors in chest, abdomen, lung, liver, spine, ribs. They are starting chemo next week. (CyVADIC). I was diagnosed about 6 weeks ago. I have no idea what to expect other than what I read on here.

Paraganglioma
I pray you get to read this, please let me know how you are and if you have any questions. I have Met Paraganglioma. Look up Dr. Paul Fitzgerald I saw his name all over this sight he is wonderful, entremely smart and he is my Doc. this cancer is his specialty.

Shanna17 said:

Paraganglioma w/ Metas
I just found this discussion board. sorry this is so late, and I pray you see this...I have Malignant Paraganglioma with Metas. in Liver, and Bone I had small tumors in my lungs but they are gone. I also did not qualify for MIBG, but by God's grace I see Dr. Paul Fitzgerald (UCSF) regularly and he recommended Temodar it's a oral Brain Cancer Chemotherapy. It has worked very well for me. I also recently added Lovastatin per Dr. Fitzgerald. I am much healthier then I was two years ago when I was diagnosed. I have wanted to talk to anyone out there with this rare cancer, (I mean I wish no one had it) but you know what I mean.

Paraganglioma w/ Metas
Hello I am new here but I have stage4 paraganglioma w/metas.I have just been told that I might have to have 3 stage chemo to slow down the spread of my cancer.Does anyone have any info on what I might be looking at? I already have had two surgeries to remove tumors and still have a small tumor on my liver and two on my head.ANY info will be appreciated.

fcraig said:

Paraganglioma w/ Metas
Hello I am new here but I have stage4 paraganglioma w/metas.I have just been told that I might have to have 3 stage chemo to slow down the spread of my cancer.Does anyone have any info on what I might be looking at? I already have had two surgeries to remove tumors and still have a small tumor on my liver and two on my head.ANY info will be appreciated.

Hi
Hi fcraig, welcome to the site. I also had a malignant paraganglioma. Mine was removed from the right side of my neck, it was a large tumor,that had spread to many lymph nodes. I had 6 weeks of radiation treatment that ended in Feb. 2010. I am now in the follow up stage and have had two post treatment PET scans that show somethings are still there, but the doctors are taking a wait and see approach right now. My doctor told me chemo would be the next treatment for me. There is not a lot of info on this cancer, which really stinks, but you need to find a doctor that knows this cancer, there are not many around but they do exist. Where are you being treated? I know the fustration you are feeling about a lack of info, because when I was first told I have the cancer I could not find any good info. Finding a good doctor made all the differance for me.

fcraig said:

Hello
Hi jbob,I am being treated at a Kaiser in California.I have had 4 large tumors removed and have three small ones left.I am going to be put on zometa bone meds in two weeks but have been told that 3-stage chemo? is in the future if these tumors spread.My doctor told me that chemo wont kill them but it will hopefully slow the progression.I was wondering if you know anyone that has had radiation instead of chemo.

treatment
Hi fcraig. I have not had any chemo yet, I have had only radiation to date. I had my operation and radiation at U of Penn in Philly, but now I see a new doctor at Sloan in NYC. This type of cancer is her expertise, she told me that radiation is used to controll one tumor or cancer in one area, but chemo is used when the cancer has spread to other parts of the body. My tumor was in my neck and had spread to several lymph nodes in my neck, so the doctors (in Philly) decided to do the radiation on the entire right side of neck and face. I now have two small "spots" in my right lung that they are watching. They light up on a pet scan, but are only 6mm in size so they are to small to biopsy right now. If they show any sign of growing, my doctor says she will start chemo. I wish I had more info for you, but I am still learnering about paraganglioma too, never thought in my wildess dreams that this would happen to me. It has tought me to enjoy life and to be thankful for everyday.

fcraig said:

treatment
Jbob thank you for your insight.It is nice to know that I'm not the only one out here with this cancer.I too have never thought this would happen to me either as bad as it sounds I always thought it would happen to the "other guy".I also take one day at a time being thankful for everything around me.I will post more as I continue my journey and welcome anyone else to post in responce as well.

Paraganglioma
Paraganglioma

My father has been diagnosed with metastatic paraganglioma (districts of abdomen, retroperitoneal area, lynths, liver, skeletal bone). We are a family from Ukraine. Recently he has been treated in Switzerland with 2 cycles of radionuclide therapy with 90 DOTATATE. We will be very happy to have a communication and cooperation with you.

Hope, everything will be ok.

Stanislav

WRITE US

dobra2007@rambler.ru

or find us in ICQ under the nick "Stas Batryn"

Dave B said:

One not sad story
I also have metastasized paraganglioma. Mets mainly to spine and lungs. Was diagnosed in March of 2003; was determined that the origin was the carotid body tumor I had removed in 1990. Have been on monthly Zometa since Dec 2003. Lung mets are "too numerous to count" and have been stable at 4-6mm since diagnosis. Bone mets seem to keep growing, but also at a slow rate. Have had radiation treatment to my lumbar area in 2004 and 2008 to control pain. No chemo ever. I see my onc about every four months for a routine check, and off I go. No clue why the slow growth now. Just taking every day as a gift, and not thinking about tomorrow until I wake up that day. I hope this helps the spirits of both the newly diagnosed and all others. This cancer can go indolent all on its own. Have hope.

One not sad story reply
Thanks for the encouraging news Dave B.I was diagnosed with Paraganglioma a year ago and have had two operations to remove two very large tumors.I havent had any radiation as of yet but I do 3-stage chemo once a month.The chemo has stopped the growth of my current tumors and I havent had any "new" growths....Two tumors have even dissappeared,THERE is HOPE for Paraganglioma survivors and I thank-you for the reminder.

fcraig said:

Paraganglioma w/ Metas
Hello I am new here but I have stage4 paraganglioma w/metas.I have just been told that I might have to have 3 stage chemo to slow down the spread of my cancer.Does anyone have any info on what I might be looking at? I already have had two surgeries to remove tumors and still have a small tumor on my liver and two on my head.ANY info will be appreciated.

HOPE
have paraganglioma w/metas also. head, neck, liver, lungs and bone. Not much left, huh?
3 yrs ago, 2008, I took xeloda and temodar for 15 days a month for 13 months. No new tumors after 2 yrs being off chemo. Numerous original tumors are still there but unchanged.
this is an inherited tumor. I was 5th in famly but others were not meliginant. son has tested positive so pls get genetc testing for the sake of your families. It can lay dormant and show-up in the next generation. it's a dreadful disease. I am so sorry to know anyone else in the world has this condtion. Pray, give your life to God and God Bless You.

hollyshoe said:

CBT
I had a CBT removed from the left side of my neck, and it was malignant and had spread to several lymph nodes only. I had 6 weeks of radiation, and am doing well now. You're right, there is not alot of info...but it seems to want to spread, but takes years to do it. Good luck with your journey.

Paraganglioma
Hello hollyshoe and the other members posting on this site. I am delighted to see that people are doing so well with this terrible disease. I have mets in my temporal bone,both femur's,humerus, and abdomen. There is not a lot of information here in Ireland in relation to these tumors. Last case in the city where I live was 2005. The battle I seem to have is trying to get treatment. I promised myself that I will fight this disease and I am going to have some fun along the way with my two young children. Whilst I know it is hard to stay positive its all that we have got really. Best Wishes to all, JR.