Metastatic paraganglioma -How are you doing?

barosebud

Hello,
Just wanted to find out how everyone is doing with this disease. It's been 12+ months since I first logged on. My husband is doing well and has been stable for the past two years now. Love to hear from other survivors and see how you all are faring with your treatments and therapies. Take Care...Beth

TereB

Hi Beth,

Glad to hear your husband is doing well and stable. Can't remember when I talked to you last but I'm doing OK. One new tumor on right femur, most tumors are dormant at the moment, no significant growth in the past two years. The best thing is that the primary tumor in head and one of the big ones in spine (L1) have shrunk some, all by themselves. Since tumors have been mostly dormant and none is causing pain I have not had radiation since 2002. Did radiation treatment for your husband in Europe worked? Has there been any changes since then? Hope both of you are doing well.
All the best,
TereB

kristab

Hi, I just found this sight and put in the keyword carotid body tumors. I noticed that the history seems to have started with the carotid body tumors. I have had bilateral carotid body tumors and had surgery in 2001 and 2003. I was hoping that I could get some background on how you discovered that the cancer had spread. My pathology was negative for cancer. I would deeply appreciate any advice or help. By the way, I am a 39 yr. old female with a sister who also had a carotid body tumor. Thanks, Krista

barosebud

TereB said:

Hi Beth,

Glad to hear your husband is doing well and stable. Can't remember when I talked to you last but I'm doing OK. One new tumor on right femur, most tumors are dormant at the moment, no significant growth in the past two years. The best thing is that the primary tumor in head and one of the big ones in spine (L1) have shrunk some, all by themselves. Since tumors have been mostly dormant and none is causing pain I have not had radiation since 2002. Did radiation treatment for your husband in Europe worked? Has there been any changes since then? Hope both of you are doing well.
All the best,
TereB

Hi TereB,
Glad to hear you are doing well. I'm glad some of your tumors have shrunk...we take all the good news we can these days My husband has a question for you. Have you had any other treatment, chemo, etc. besides radiation? Do they run a blood test called Chrom A? It's a cancer marker. John has been doing quite well though he now added a neurosurgeon to his medical team, since he has several tumors in his cervical and thoracic spine. He had a bulging disc, but it resolved itself and he is fine. His treatment in Rotterdam has worked with shrinkage and stable disease the past two years. His blood levels are normal at this time. I continue to read good news about this treatment and keep in touch with several other patients we met while traveling back and forth.
I'm always looking for new studies and new treatments...I am very hopeful for the future.
Take Care for now.

Beth

TereB

barosebud said:

Hi TereB,
Glad to hear you are doing well. I'm glad some of your tumors have shrunk...we take all the good news we can these days My husband has a question for you. Have you had any other treatment, chemo, etc. besides radiation? Do they run a blood test called Chrom A? It's a cancer marker. John has been doing quite well though he now added a neurosurgeon to his medical team, since he has several tumors in his cervical and thoracic spine. He had a bulging disc, but it resolved itself and he is fine. His treatment in Rotterdam has worked with shrinkage and stable disease the past two years. His blood levels are normal at this time. I continue to read good news about this treatment and keep in touch with several other patients we met while traveling back and forth.
I'm always looking for new studies and new treatments...I am very hopeful for the future.
Take Care for now.

Beth

Hi Beth,
The only treatment I've had besides the initial surgery has been radiation for the first metastases and when one of the tumors is causing pain. There is only one drug in chemotherapy but it is old, only shrinks the tumors some and that is why my oncologist and I decided not to used it until absolutely necessary since it makes you so sick.

I have not had a Chrom A test; I have MRIs, scans & blood at least twice a year. New pics are compared with the old ones to check for new tumors or growth of old ones. I do have a blood test to check for cancer marker but that is for ovarian cancer, nothing to do with the paraganglioma (I had a hysterectomy in 2002). I have many tumors along my spine but I do not see a neurosurgeon. One of those tumors on lumbar spine is the one that shrunk. I had radiation for two tumors on spine (thoracic and lumbar around sacro) because they were causing pain. At the moment my tumors seem to be dormant. Years ago I had some small ones in lungs and they shrank and disappeared with no treatment. I have new mets in my lungs again but are small and slow growing.

While in Rotterdam, did your husband have radiation on every tumor? Did they do anything else?

I am very glad your husband is doing well and I hope he continues to improve. Please let me know if you hear of any new treatment or whatever information on paragangliomas.

All the best,
TereB

egge

Hello Beth;
I am glad your husband is doing fine and that the treatment worked. Darin is doing pretty good, it has been a year now coming up on june 9th since his diagnosis. He had a checkup in Dec and everything looked fine, he had a Mri and a Pet Scan. We are going back to Mayo Clinic (rochester) at the end of the month. We will have another checkup coming up June 27th. We are praying for good results. He seems to improve a little bit every day and for that we are thankful. We are hopefull and trusting God above. Our girls just turn 4 and 1 on May 14 & 15, we are hoping for a better year.

Today we are joining a lot of people in our town in the Relay for Life. Cancer has changed our views and priorities.
How many people were there with you in the NL? and how are they doing?
I hope you have a wonderful summer.
God Bless
Jessica

AuthorUnknown

Hi Beth,
Like you, I haven't checked this board in a while. Glad to hear that John is still doing well. Still fine here, too, with little growth in over two years. Getting CT's 2-3 times a year and see the oncologist 3-4 times. Thinking about this disease takes less and less of my time as the years pass. My best to you and John. Dave

paraneck

Hello, I had a malignant paraganglioma removed from my left carotid artery 20 years ago, as a result of the surgery, My left carotid system does not work anymore, I now have a paraganglioma on my right carotid artery and need to have it surgically removed, I am really scarred, since this is my main blood flow to my brain,and they have to try to get this tumor off without damaging my artery, I would reallyfeel better about this surgery if i could find someone who has had this surgery done with my circumstances. Please sendme any info. Thank-you and God bless

lombo

paraneck said:

Hello, I had a malignant paraganglioma removed from my left carotid artery 20 years ago, as a result of the surgery, My left carotid system does not work anymore, I now have a paraganglioma on my right carotid artery and need to have it surgically removed, I am really scarred, since this is my main blood flow to my brain,and they have to try to get this tumor off without damaging my artery, I would reallyfeel better about this surgery if i could find someone who has had this surgery done with my circumstances. Please sendme any info. Thank-you and God bless

I must say I am happy to find this discussion page! I am the loving husband of a Paraganglioma diagnosed 36 yr old female, and we thought we were all alone in the world. She is an MD Anderson patient, after a bad 5 months at Univ. of Miami (another story for another time.) She has a toumor in her abdomen that started in her sacrum which was repeatedly discribed as Huge. She had 6 multiple chemo drug treatments and handled them very well and the tumor did not shrink but was stabilized. Her last treatment was in october 2004 and she has had cat, and bone scans every three month since with no change. Now she is having pretty severe pain in her back and down the back of her right leg. I need to have some more info from those of you that have been dealing with this for longer and whatever info you have would be greatly appreciated. Sorry for the rambling message but I wanted to get the info out.
jim

kate100

lombo said:

I must say I am happy to find this discussion page! I am the loving husband of a Paraganglioma diagnosed 36 yr old female, and we thought we were all alone in the world. She is an MD Anderson patient, after a bad 5 months at Univ. of Miami (another story for another time.) She has a toumor in her abdomen that started in her sacrum which was repeatedly discribed as Huge. She had 6 multiple chemo drug treatments and handled them very well and the tumor did not shrink but was stabilized. Her last treatment was in october 2004 and she has had cat, and bone scans every three month since with no change. Now she is having pretty severe pain in her back and down the back of her right leg. I need to have some more info from those of you that have been dealing with this for longer and whatever info you have would be greatly appreciated. Sorry for the rambling message but I wanted to get the info out.
jim

Jim,
I am sorry to hear that your wife has been diagnosed with paraganglioma. I too have metastatic abdominal paraganglioma (May 2005). I found a doctor at UCSF who is a world re-known expert w/paraganglioma. I was turned away from the Mayo Clinic in MN and then found Dr. Fitzgerald at UCSF. Three weeks ago I underwent IMBG radiation therapy and my prognosis is much greater than originally thought. I highly encourage you to contact him. Please see the following link for more information: http://www.communityoncology.net/journal/articles/0101047.pdf
I wish you and your family the best of luck and health.
Kate
caringbridge.org/mn/katehuntmortenson

dcharter

kate100 said:

Jim,
I am sorry to hear that your wife has been diagnosed with paraganglioma. I too have metastatic abdominal paraganglioma (May 2005). I found a doctor at UCSF who is a world re-known expert w/paraganglioma. I was turned away from the Mayo Clinic in MN and then found Dr. Fitzgerald at UCSF. Three weeks ago I underwent IMBG radiation therapy and my prognosis is much greater than originally thought. I highly encourage you to contact him. Please see the following link for more information: http://www.communityoncology.net/journal/articles/0101047.pdf
I wish you and your family the best of luck and health.
Kate
caringbridge.org/mn/katehuntmortenson

Hello, my girlfriend was diagnosed with very large paraganglioma on her carotid 2 years ago. She was too afraid to have the surgery right away but together we decided to have it done at St Lukes in Denver, CO. She had a 15 hour surgery on 10/26/05 and is still in the hospital. They removed a lemon sized tumor from her artery and had to remove part of the artery and suture it back together to get all of it. After they performed a biopsy they discovered that it is in her lymph nodes as well. We thought this surgery would be the end of this nightmare and back on to our normal lives. But now we are as scared as ever now that it sounds like there is a chance of it spreading. The dr. called it malignant paraganglioma. She is only 25 years old and such a beautiful caring person. Now the doctors are talking about radiation treatments.. She has another tumor on the right side of her neck but it is only marble sized so they hopefully can get rid if it with radiation. If anyone has any information or words of advice we would really appreciate it.

Thanks for listening and God Bless,
David

egge

dcharter said:

Hello, my girlfriend was diagnosed with very large paraganglioma on her carotid 2 years ago. She was too afraid to have the surgery right away but together we decided to have it done at St Lukes in Denver, CO. She had a 15 hour surgery on 10/26/05 and is still in the hospital. They removed a lemon sized tumor from her artery and had to remove part of the artery and suture it back together to get all of it. After they performed a biopsy they discovered that it is in her lymph nodes as well. We thought this surgery would be the end of this nightmare and back on to our normal lives. But now we are as scared as ever now that it sounds like there is a chance of it spreading. The dr. called it malignant paraganglioma. She is only 25 years old and such a beautiful caring person. Now the doctors are talking about radiation treatments.. She has another tumor on the right side of her neck but it is only marble sized so they hopefully can get rid if it with radiation. If anyone has any information or words of advice we would really appreciate it.

Thanks for listening and God Bless,
David

Hi David:
I was wondering how your girlfriend is doing? Hope all is well.
Jessica

llouise

kate100 said:

Jim,
I am sorry to hear that your wife has been diagnosed with paraganglioma. I too have metastatic abdominal paraganglioma (May 2005). I found a doctor at UCSF who is a world re-known expert w/paraganglioma. I was turned away from the Mayo Clinic in MN and then found Dr. Fitzgerald at UCSF. Three weeks ago I underwent IMBG radiation therapy and my prognosis is much greater than originally thought. I highly encourage you to contact him. Please see the following link for more information: http://www.communityoncology.net/journal/articles/0101047.pdf
I wish you and your family the best of luck and health.
Kate
caringbridge.org/mn/katehuntmortenson

Kate,
I too have Metastatic Paraganglioma. I am currently scheduled for MIGB treatment at UCSF with Dr. Fitzgerald in October, as they are only taking 1 person per month now. My uptake levels were apparently very high, so I'm hopeful. The preparation procedures sound a bit scary. I had a very large tumor removed from my spine 3 years ago. I was diagnosed just after my son turned 1. It compressed my spinal cord, and I lost all the feeling in my lower torso, legs and one foot. The head of the Spinal Center specializes in the spine so he and another Neurosurgeon, who specialized in the spinal cord, resected the tumor. After a long recovery, I regained all the feeling and my ability to walk. 6 months later, I had one removed from my abdomen. In December, during my regular scans, they discovered several tumors along my spine & pelvis. I also have one in my sternum. I waited until the end of March to get an appt w/ Dr. Fitzgerald. Then, since he takes no insurance, I was only able to see him once. My Dr. then referred me to Stanford, where they did my MIGB uptake test and all the other scans. My Oncologist worked w/ Dr. Fitzgerald and got me into the clinical trial. I just went thru 15 days of radiation, in order to try and shrink the tumor on my spine, as they were concerned about more compression on my spinal cord. So now, I can pretend I have a normal life until October. If you have any information/advise to share regarding the MIGB treatment, I would appreciate it.
Thank you,
Lola

kate100

llouise said:

Kate,
I too have Metastatic Paraganglioma. I am currently scheduled for MIGB treatment at UCSF with Dr. Fitzgerald in October, as they are only taking 1 person per month now. My uptake levels were apparently very high, so I'm hopeful. The preparation procedures sound a bit scary. I had a very large tumor removed from my spine 3 years ago. I was diagnosed just after my son turned 1. It compressed my spinal cord, and I lost all the feeling in my lower torso, legs and one foot. The head of the Spinal Center specializes in the spine so he and another Neurosurgeon, who specialized in the spinal cord, resected the tumor. After a long recovery, I regained all the feeling and my ability to walk. 6 months later, I had one removed from my abdomen. In December, during my regular scans, they discovered several tumors along my spine & pelvis. I also have one in my sternum. I waited until the end of March to get an appt w/ Dr. Fitzgerald. Then, since he takes no insurance, I was only able to see him once. My Dr. then referred me to Stanford, where they did my MIGB uptake test and all the other scans. My Oncologist worked w/ Dr. Fitzgerald and got me into the clinical trial. I just went thru 15 days of radiation, in order to try and shrink the tumor on my spine, as they were concerned about more compression on my spinal cord. So now, I can pretend I have a normal life until October. If you have any information/advise to share regarding the MIGB treatment, I would appreciate it.
Thank you,
Lola

Lola,
As long as you had good to excellent MIBG uptake, I have strong faith in MIBG. I am now seeing a doctor at the U of Iowa (Dr. O'Dorisio). As I understand it, he will soon offer a combo of 131 MIB and y-90. You may wish to contact him at some point to find out what else is on the horizon. Please send me an email at brmortenson@yahoo.com if you want more details on 131 in San Francisco or if you have any questions. I am glad to hear that they have controlled the growth in your spine!
Best of health to you!
Kate

kate100

kate100 said:

Lola,
As long as you had good to excellent MIBG uptake, I have strong faith in MIBG. I am now seeing a doctor at the U of Iowa (Dr. O'Dorisio). As I understand it, he will soon offer a combo of 131 MIB and y-90. You may wish to contact him at some point to find out what else is on the horizon. Please send me an email at brmortenson@yahoo.com if you want more details on 131 in San Francisco or if you have any questions. I am glad to hear that they have controlled the growth in your spine!
Best of health to you!
Kate

Hi - I recently received y-90 radiolabeled isotope therapy in Switzerland for Metastatic Paraganglioma (abdominal). For the first time since my diagnosis, my CT results showed that my tumors have not grown and actually have shrunk some! I have had 131MIBG but did not have very good uptake and thus it did not work for me (although I think it is a good option for others). Since May of '05, I have had monthly or quarterly CT scans and the results have never been good until now! For those of you who have tried or are not eligible for MIBG, this may be an option that you will want to investigate. Best of health to you.
Kate