malignant paraganglioma

fcraig said:

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.

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.

TereB said:

Glad for you, Dave B
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.

BobB2 said:

TereB
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.

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.

madura_g said:

Multiple Paragangliomas in Abdomen
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

aliveandkicking said:

Carotid body tumor
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.

marciewhipple said:

Malignant Paraganglioma success!!
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!!!

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. 

Hi everyone, I'm so thankful to find all of your contributions  to this important website. My daughter who just turned 26 was recently diagnosed with Carotid Paraganglioma. She was told she needs surgery to remove the tumor which is filled with the fight or flight hormone. Her tumor is on the left side of her neck under her ear. She was also told her Epstein Bar showed up high after some blood testing and she likely had Mono. Since my daughter and her new husband are working fulltime, we have set out to find her a vascular surgeon. We live in Orange County, California and are willing to travel to find someone/a team that has experience with this. I'm reaching out to ask if anyone can recommend an excellent team that we can contact. Thank you in advance for any help or direction you can provide.

Thank you, and I pray you are doing well.

Sincerely,

Caryn