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malignant paraganglioma

mitzi100
Posts: 4
Joined: Jun 2006

Looking for treatment options for my husband who has metastatic paraganglioma(abdominal). He was diagnosed only after it had spread to both lungs. Major surgeries removed all tumors and he was cancer free for over a year. The tumors are now back in both lungs and surgery is not an option. He is also not a candidate for MIBG treatment. Please share any information that may help him. Bless you.

barosebud
Posts: 12
Joined: Oct 2003

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

wontquit15
Posts: 6
Joined: Sep 2007

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
Posts: 4
Joined: Aug 2009

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.

barosebud
Posts: 12
Joined: Oct 2003

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 :)

Shanna17
Posts: 2
Joined: Aug 2010

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
Posts: 2
Joined: Aug 2010

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.

fcraig
Posts: 9
Joined: Aug 2010

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.

Trusting God
Posts: 3
Joined: Oct 2010

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.

fcraig
Posts: 9
Joined: Aug 2010

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
Posts: 9
Joined: Aug 2010

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.

jbob1981
Posts: 12
Joined: Feb 2010

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
Posts: 9
Joined: Aug 2010

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.

jbob1981
Posts: 12
Joined: Feb 2010

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
Posts: 9
Joined: Aug 2010

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.

Stas
Posts: 5
Joined: Sep 2010

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"

madura_g
Posts: 2
Joined: Jan 2012

Hi,

When I was reading through the csn.cancer.org forums, I cam across one of your posts about your father having being diagnosed with Paraganlioma. I thought of get in touch with you to get more details about this condition as my father also been diagnosed with multiple paragangliomas in his kidney, adrenal and extra-adrenal locations and some other locations in the chest area. My father lives in Sri Lanka and we learned that they don't have the expertise and the technology to treat this condition in my home country. We are totally helpless as we have to come to a very desperate situation without any proper directions how go about it. In your post you mentioned that your father received treatments in Switzerland. Appreciate if you could let me know how to seek medical assistance in Switzerland and if you had to pay for the medical expenses how much did they cost you. Also let me know whether they have the expertize in surgical procedures to remove these tumors, if my father is eligible for such an option.

Thanking you for your time and kindness and I am really grateful to you if you could provide us some advice or guidance.

Best Regards
Madura Gurusinghe
email: madura_g@yahoo.com

hollyshoe's picture
hollyshoe
Posts: 3
Joined: Nov 2011

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.

JR34
Posts: 3
Joined: Oct 2011

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.

aliveandkicking
Posts: 3
Joined: Mar 2012

Hi Hollyshoe. I also had a 2cm carotid body tumor removed from the left side of my neck in 2008. I had first noticed it 4 yrs earlier but chose to ignore it. They found it during an ultrasound to examine my parotid gland which had blown up to the size of an orange! They removed the tumor with no margins and told me that there was no way for pathologist to tell if a carotd body tumor is malignant, the only way is to see if it grows back and spreads. They also told me that they are not usually malignant,however a specialist i met with a year later said that they can be up to 25% of the time. Since then i havehad problems with swelling of my upper left neck and inner ear as well as ongoing swelling ad enlarged parotid gland. I also seem to have some jaw erosion/pain. They did a CT last year and couln't see anything but an nlarged cervical node and slightly enlarged parotid gland. Just wondering if you had any of these symptoms in your neck. Any info. would really help.

hollyshoe's picture
hollyshoe
Posts: 3
Joined: Nov 2011

In 2005, age 46, I woke up with Mono-like symptoms. Only difference was I had only one large swollen gland on my neck. I tested positive for Mono, and although the gland got a little smaller it didn't go away, and the extreme tiredness never got better. After several months I saw a head/neck Dr and a scan confirmed a Carotid body tumor. It was surgically removed 2006 (it was almost 5cm) at Wake Forest (Dr Browne did a spectacular job!), was malignant but had only spread to 3 lymph nodes, followed by 6 weeks of radiation. The following year I started having palpitations which turned into constant Atrial Fibulation (A-Fib), not sure if that is partly because of the treatment. I still have the tiredness problem- which has never gone away. But other than that, I'm doing well.

Dave B
Posts: 7
Joined: Nov 2010

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.

fcraig
Posts: 9
Joined: Aug 2010

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.

BobB2
Posts: 2
Joined: Dec 2011

Thanks for the encouraging news and more Hope. Just diagnoised with matastisizing Paraganglioma. First noticed a tumor in parodit gland area. CTs, MRIs, PET, show 9 tumors in the spine and neck. Two near middle of back are large enough to be pushing on the spinal cord. Some smaller tumors appear to be in pelvis, abdomen, and other areas. It appears a decision on treatment is coming soon. Any advise or experiences with surgery near the back to remove such tumors? Results from radiation treatment of spine and neck? Chemo also seems to be in the picture down the line.

TereB
Posts: 288
Joined: May 2003

I have malignant Paraganglioma because I have many metastases. Before any mets, it was a glomus jugulare tumor in my head, around the ear area. Tumor was removed with surgery but it grew back, very aggressive and little by little I've been having new tumors on my neck, lungs, bones (spine, pelvis, femur, clavicle, etc.). The type of tumors I have are slow growing. I've had radiation several times and it works by shrinking the tumor and also encapsulates it. I think they've used different types of radiation on me, different machines and it has always worked, tumor has shrank and pain stops. Last I heard there was only one chemo drug, old and only shrinks the tumors so I haven't tried it, see no reason to get so sick with chemo when the tumor only shrinks. My primary/original tumor is rare so I guess there hasn't been a lot of research. First tumor was found in 1987 and even though I have so many mets, I am still around, still work. 2-3 times a year sometimes or at least once a year I have an MRI and CT scan to check for new tumors and keep an eye on growth of the old ones. My tumors go dormant sometimes and do not grow at all, that's when I do not need tests so often.

I had radiation on my back about a year ago because 2 tumors on my spine where pushing on the spinal cord (thoracic vertebra). There was a little pain, barely noticeable, but it went away after radiation. For the tumors on pelvis I had stereo tactic radiation (they wrapped me around special table and technician moved me around with his computer and shot me from different angles, just like those internet games. This radiation was short and I didn't get sick.

I also had radiation on my neck years ago. That tumor is still there but hasn't caused any problems since then. Since I've had radiation in the head/neck area more than once, it affected my jaw bone (mastoid, I think) and my teeth. If you need a dentist, get one who has experience with cancer patients, especially if a tooth needs to be pulled. Radiation in the head/neck area dries your mouth so you need to have good teeth hygiene.

Don't know what else to tell you because I am not sure if we started with the same tumor. If it is like mine or similar (carotid body tumor) you'll be around for a long while and you may not need chemo.

All the best

Paraganglioma covers many tumors, not all are the same. Do you what was your original/primary tumor or where it was?

BobB2
Posts: 2
Joined: Dec 2011

Thanks for the encoraging information you shared. I'm having radiation treatments on my spine tumors now. It's a bit early, but signs are pointing to it working. The Hemo Oncologist is recommending Chemo to start a few weeks after radiation ends. Looks like they are picking CyADIC, a Cyclophasphamide combo. Not sure about strenght and how much/ how long yet. I think they want to try and reduce size of the tumor near my jaw and to get to some of the tumors or lesions in the bones themselves.

Not sure where my first tumor or origin of the Paraganglioma came from. I did not have any symptoms except for about a 30 lb weight loss 3 years ago. Very recently had neck pain, lower spine pain, and jaw pain which lead to CT's, diagnosis, etc. We do not know how long I may have been living with this and how fast the tumors are growing if at all. I plan to discuss "limited" Chemo, and monitoring with my Oncologist.

Thanks again for the hope for more days we can be thankfull for.

madura_g
Posts: 2
Joined: Jan 2012

Hi TereB,

While reading through the posts in this forum, I came across your post about your condition. My father too was recently diagnosed with multiple paragangliomas in his abdoman and chest areas. In fact, first he was diagnosed with a tumor in the left side of the head and they removed the tumor with a surgery. However, post surgery biopsy suggested that it's a paraganglioma and advised to perform CT in the abdomen area, which revealed many in his abdomen including in right kidney, adrenal and extra adrenal areas and chest areas. We still don't know the malignancy (although the oncologist suggested that it could be malignant due to the fact that it's been scattered in multiple locations) of it and we couldn't find a medical expertise in my home country (Sri Lanka) to treat this condition.

You have mentioned that you are undergoing treatments. I just wanted to know, which country you are receiving the medical assistance in? and how much it cost you for the treatments? And does the country provides any medical assistance to the international patients?

I really appreciate if you provide us with some information and that would be really helpful for us to be little relieved to know that we could at least try something rather than waiting handicapped with no solution.

Thanking You,
Madura Gurusinghe
madura_g@yahoo.com

TereB
Posts: 288
Joined: May 2003

The proper diagnosis for my rare tumor was done in the United States and that is also where I have received treatments and surgery.

I was living in Singapore when I started having problems but the doctor I saw didn't think it was serious. Same thing happened with the first two doctors in the U.S. What anybody needs is a GOOD doctor, one that is familiar with this type of cancer.

The cost of my treatments has been different over the years because price changes, different radiation machines, number of radiation sessions, etc. Medical care in Houston, Texas, United States is expensive so I have health insurance which covers a lot of the cost but I still have to pay for my share.

Some hospitals in Houston have special rates for international patients but it is not free. You can check with M. D. Anderson Cancer Hospital www.mdanderson.org or with The Methodist Hospital and they'll you know what they have for international patients. There may be other hospitals but I do not know which ones.

Good luck.
TereB

aliveandkicking
Posts: 3
Joined: Mar 2012

Hi BobB2. I was diagnosed with a carotid body tumor in left neck in 2008. They removed it, but didn't get good margins, also told me no way to know if malignant unless it came back. I have had problems with an enlarged parotid gland also on left neck, it has swelled up size of an orange (not pretty) three times starting before they discovered the CBT. I also have pain/erosion of my left jaw and what feels like a fullness in left ear. They did a CT last year that didn't reveal anything so they wrote it off to scar tissue from surgery, (athough as i reminded them the parotid gland was blowing up before they did the surgery) Any info. would help on the parotid gland. They say mine is slightly enlarged now with slightly increased blood flow from US doppler test.

TereB
Posts: 288
Joined: May 2003

I have metastasized paraganglioma or malignant paraganglioma. Mine started with a glomus jugulare tumor in my head, a cousin of your carotid body tumor. Have mets in neck, lungs, all along the spine, pelvis, femur, etc. Diagnosed in 1987 and also have many mets in lungs. For some reason, my doctor said not to Zometa. I have at least one MRI and CT scan a year (sometimes more) to check on my tumors, whether there are new ones or check growth of old ones. These type of paragangliomas are slow-growing. I have also had radiation a few times, when I was in pain and the radiation has shrunk the tumor enough to not cause pain. I haven't had chemo either because the only drug available is old and only shrinks the tumors, it's not a cure. Sometimes my tumors go dormant, no growth and don't know why. Once the two biggest tumors (one in head, one in spine) shrank all by themselves. My doctors and I wish we knew what caused them to shrink so we could do more of the same.

Dave B is right, have hope. I was first diagnosed in 1987 and I am still around. Every day I thank God for that day and I do not worry about tomorrow.

Dave B
Posts: 7
Joined: Nov 2010

Glad to see you are doing as well as before, Tere! Would love to catch up more with you, fellow 20+ year survivor.

signals4235
Posts: 1
Joined: Mar 2011

hello everyone..i had an adrenal tumour removed 1987 and a abdomen tumour removed 2010....have chest tumour and neck tumour remaining....no radiotherapy or chemo yet..removal of adrenal tumour cured high blood pressure for a while but kidney shrank bringing it back again.cateclomines rose high enough to make me feel ill so tumour was removed in abdomen which lowered levels back to normal...continue to have 48 hr water collections to keep eye on things...some very positive feedback from people here .thanks..reading other peoples accounts on here and other websites makes me think that this disease is very random in how it affects people and every case is different......

ValerRose
Posts: 6
Joined: Jun 2010

I wanted to let you all know that there's a really active Facebook support group for people with Paragangliomas and Pheochromocytomas. https://www.facebook.com/groups/pheoparasupportgroup/

marciewhipple
Posts: 3
Joined: Oct 2005

I have posted before, but it has been years. I am an almost 45 year-old mom of 3 boys and wife of a radiation oncologist, oddly enough. I had my first encounter at age 21 when they found a glomus jugulare. I had several recurrances of the primary site. Also had gamma knife at Mayo Clinic in Rochester, MN for a glomus tympanic and small brain stem activity. I've had radiation on my spine. My disease wasn't realized to be metastatic until 1999. At that time my youngest child was a month old. It was devastating. They gave me six months. I've been incredibly lucky and had the best of care available to me. My mets included lung, liver, spine, media steinum- all over the place. My PET scan was described to me as "lighting up like a Christmas Tree." Pretty comforting. Well it is now 13 years later and I'm doing really well. I am on a monthly treatment of Sandostatin and also Zomeda. They are monthly treatments. Purely a last ditch effort, but I have had basically NO GROWTH of existing disease, and the majority of my lesions have spontaneously disappeared. I'm no longer on the Zomeda, just the monthly injection of Sandostatin. My tumor marker was up over 1300 when I started treatment 10 years ago, and now I am in normal range of about 70. This is having my chromograndin checked by blood work. I know how everyone feels, but there is hope, I'm the proof!!! I would look into this treatment for anyone that is searching and finding nothing. There are basically no bad side effects from the Sandostatin, and you can be on it for life. I did have radiation on my spine which was highly successful, as was the gamma knife. I would also HIGHLY recommend that if you have this disease, you do NOT become pregnant. In our opinion, my condition was worsened by pregnancy, since there is a hormonal component to the tumor type. Probably explains why my 1st PET scan was so active, and now they are basically normal. I had just had a baby prior to the first one. I'm happy to help anyone any way that I can. My oncologist tells me that I should live a normal life span. Please feel free to email me at Marcieboleywhipple@gmail.com. God bless you- and know that there ARE survivors living pretty normal lives!!!

Shucrazi74
Posts: 2
Joined: Oct 2013

I am so happy reading your site. I was just diagnosed at 38 and so far have been pretty responsive to treatment. But finding out that the gene mutation that I have doesn't allow me to be a canadit for some treatment, it's nice to know that there is other options. My team of doctors at penn in pa are awesome. But I would like to talk to them about these other options in case I need something eles. Any other feed back would be great. 

Shucrazi74
Posts: 2
Joined: Oct 2013

I am reading all of this info that everyone is posting. It's nice to read that other people are going through this also. I have a tumor in my thigh, sacrum and now in my spine near my T4. I had surgery in April to remove one from my pelvis. I was treated with 36 rounds of radiation and now just finished my 1st treatment of MIBG. Any advice would be great. 

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