Glomus Jugulare Tumor / Malignant / Glomus Tumor / Carotid

egge
egge Member Posts: 20
edited March 2014 in Rare and Other Cancers #1
My husband a very handsome police seargent (35 years old) was diagnosed with this kind of tumor on his left ear. He just had surgery on June 11, 04 in Rochester MN. It had spread to a couple of lymph nodes on his left side. He is leaving to go back to Mayo Clinic on Aug 1 to start radiation. I will love to compare notes and hear possitive feedback. This is a scary time in our lifes that I would have never imagine, but we try dealing with it on a daily basis. We are a young family from North Dakota, we have 2 girls, a 3 year old and a 2 month old. My baby was borned 2 weeks before daddy's surgery. I am overwhelm with emotions and trying to find some positive stories and some info. Thank you and God bless you and your families!

Comments

  • marciewhipple
    marciewhipple Member Posts: 3 Member
    #2
    I just stumbled on one of your postings. I am a 38 year-old mom of 3 boys and wife to a radiation oncologist. I had my first glomus tumor removed when I was 21, and the first recurrence removed at 23. After being clean for 10 years I was diagnosed w/ metastatic disease. The little bugger had invaded my lungs, spine and about 3 or 4 other places. The only treatment that I received at the time was radiation to my spine. Two years ago we found another glomus near my tympanic bone (inner ear). Apparently once again- part of the original. I had gamma knife treatment at Mayo in Nov. 2003. Currently I am under the care of an oncologist and I have monthly treatments of Sandostatin and Zomeda, the Sandostatin for the tumor itself, the Zomeda to strengthen my bones from all of the damage. As you mentioned in your posting, we are extremely rare. I do have someone that I correspond with that is back in New York that has an almost identical situation as I have. We need to keep track of each other. Right now I have no active disease that we can trace. Nothing shows on PET, and there is just shadowing on MRI and CT. Let me know what is up with you!

    I hope that all is well with you!

    Sincerely,

    Marcie Whipple
  • rjramirez
    rjramirez Member Posts: 1
    #3
    marciewhipple said:

    I just stumbled on one of your postings. I am a 38 year-old mom of 3 boys and wife to a radiation oncologist. I had my first glomus tumor removed when I was 21, and the first recurrence removed at 23. After being clean for 10 years I was diagnosed w/ metastatic disease. The little bugger had invaded my lungs, spine and about 3 or 4 other places. The only treatment that I received at the time was radiation to my spine. Two years ago we found another glomus near my tympanic bone (inner ear). Apparently once again- part of the original. I had gamma knife treatment at Mayo in Nov. 2003. Currently I am under the care of an oncologist and I have monthly treatments of Sandostatin and Zomeda, the Sandostatin for the tumor itself, the Zomeda to strengthen my bones from all of the damage. As you mentioned in your posting, we are extremely rare. I do have someone that I correspond with that is back in New York that has an almost identical situation as I have. We need to keep track of each other. Right now I have no active disease that we can trace. Nothing shows on PET, and there is just shadowing on MRI and CT. Let me know what is up with you!

    I hope that all is well with you!

    Sincerely,

    Marcie Whipple

    I just found my way here, looking for others with this rare cancer. I would so appreciate and value having others to talk with about this. Mine began in 1996 and diagnosed as tempatic glomus. Had surgery and lost most of the hearing in my left ear. Then in 1998 I began to get quite hoarse and had difficulty swallowing. I went to UC Davis in Sacramento, CA and after CT and MRI it was diagnosed as Jugulare. Went through 15 hour surgery. I guess I went on believing all was fine so quit following up with MRI's. I just wanted to get on with life. Well here I am again. This time it is up against the brain stem. I completed 6 weeks radiation and now am having an MRI every 4 months. Because it is so rare it is hard to find people to be in touch with for knowledge and support. Feel free to contact me as well. I'm grateful I found these messages and web site. Jude
  • Dinab
    Dinab Member Posts: 2
    #4
    marciewhipple said:

    I just stumbled on one of your postings. I am a 38 year-old mom of 3 boys and wife to a radiation oncologist. I had my first glomus tumor removed when I was 21, and the first recurrence removed at 23. After being clean for 10 years I was diagnosed w/ metastatic disease. The little bugger had invaded my lungs, spine and about 3 or 4 other places. The only treatment that I received at the time was radiation to my spine. Two years ago we found another glomus near my tympanic bone (inner ear). Apparently once again- part of the original. I had gamma knife treatment at Mayo in Nov. 2003. Currently I am under the care of an oncologist and I have monthly treatments of Sandostatin and Zomeda, the Sandostatin for the tumor itself, the Zomeda to strengthen my bones from all of the damage. As you mentioned in your posting, we are extremely rare. I do have someone that I correspond with that is back in New York that has an almost identical situation as I have. We need to keep track of each other. Right now I have no active disease that we can trace. Nothing shows on PET, and there is just shadowing on MRI and CT. Let me know what is up with you!

    I hope that all is well with you!

    Sincerely,

    Marcie Whipple

    Hi! I too had a malignangt glomus tumor removed from My foot (not jugulare) in summer 05. I have wide spread mestastasis in lung, liver, spleen, kideny and brain in January 06. could use some encouraging news, especially from you Marica.

    dinab
  • Dinab
    Dinab Member Posts: 2
    #5
    marciewhipple said:

    I just stumbled on one of your postings. I am a 38 year-old mom of 3 boys and wife to a radiation oncologist. I had my first glomus tumor removed when I was 21, and the first recurrence removed at 23. After being clean for 10 years I was diagnosed w/ metastatic disease. The little bugger had invaded my lungs, spine and about 3 or 4 other places. The only treatment that I received at the time was radiation to my spine. Two years ago we found another glomus near my tympanic bone (inner ear). Apparently once again- part of the original. I had gamma knife treatment at Mayo in Nov. 2003. Currently I am under the care of an oncologist and I have monthly treatments of Sandostatin and Zomeda, the Sandostatin for the tumor itself, the Zomeda to strengthen my bones from all of the damage. As you mentioned in your posting, we are extremely rare. I do have someone that I correspond with that is back in New York that has an almost identical situation as I have. We need to keep track of each other. Right now I have no active disease that we can trace. Nothing shows on PET, and there is just shadowing on MRI and CT. Let me know what is up with you!

    I hope that all is well with you!

    Sincerely,

    Marcie Whipple

    I too have a glomus tumor,however, it originated in my foot not head. diagnosed summer 05 and metastasized jan o6 several organs and brain. could use some words of encouragement.
    dinab
  • corri
    corri Member Posts: 3
    #6
    Dinab said:

    I too have a glomus tumor,however, it originated in my foot not head. diagnosed summer 05 and metastasized jan o6 several organs and brain. could use some words of encouragement.
    dinab

    Hi Dinab, please try not to worry. I know its hard. This isn't the killer disease it once was any more.
    I'm 38, my names Corrina, i live in the UK. My mother died in 1996 from this disease. She had seven re-occurences of glomus jugulare and in the end was so badly "damaged" from all the nerve damage evry time that they could no longer operate. This was mostly in the late 70's early 80's so the medical profession didnt know as much as they do now.
    I have had two glomus jugulares removed, i currently still have one at base of skull on left side, its been stunned by the gamma knife. Last year i had one glomus removed from thyroid, i also had a small carcinoma. And in June i had a right side carotid body tumor removed which was absolutley horrendous. Two days after surgery i coulnt breathe where all the swelling was building up around my vocal chords, so i had a tracheotomy for few weeks. I also couldnt swallow food or drink for three months, and had a P.E.G. tube put in. Plus my voice went completley, i never thought it would all come back, i was that ill. I really thought my time had come, honest. I was so scared. But my surgeon is so amazing and skillfull, and promised me, none of the nerves were cut, just badly bruised so it would all come back.

    Now im waiting to return to work, and eating and drinking, and shouting at my husband!
    So please have faith, no matter how bad you get, hold on, it will improve, this is 2006, more and more is known about this every day.
    Im also awaiting a test to see if my son carries the faulty gene responsible for the tumor being passed on through the family. I hope to god he doesnt have it. But if he does we will deal with it. We have to . Im not just gonna let this thing beat us, no way. Keep going everyone. xxxx
  • corri
    corri Member Posts: 3
    #7
    rjramirez said:

    I just found my way here, looking for others with this rare cancer. I would so appreciate and value having others to talk with about this. Mine began in 1996 and diagnosed as tempatic glomus. Had surgery and lost most of the hearing in my left ear. Then in 1998 I began to get quite hoarse and had difficulty swallowing. I went to UC Davis in Sacramento, CA and after CT and MRI it was diagnosed as Jugulare. Went through 15 hour surgery. I guess I went on believing all was fine so quit following up with MRI's. I just wanted to get on with life. Well here I am again. This time it is up against the brain stem. I completed 6 weeks radiation and now am having an MRI every 4 months. Because it is so rare it is hard to find people to be in touch with for knowledge and support. Feel free to contact me as well. I'm grateful I found these messages and web site. Jude

    Jude! do you remember me, Corrina from the UK. Oh my god im so sorry to hear your news. It wont leave us alone eh? Just had my fifth one removed. keep your chin up girl. we will beat it. lotsa love xxx
  • corri
    corri Member Posts: 3
    #8
    corri said:

    Hi Dinab, please try not to worry. I know its hard. This isn't the killer disease it once was any more.
    I'm 38, my names Corrina, i live in the UK. My mother died in 1996 from this disease. She had seven re-occurences of glomus jugulare and in the end was so badly "damaged" from all the nerve damage evry time that they could no longer operate. This was mostly in the late 70's early 80's so the medical profession didnt know as much as they do now.
    I have had two glomus jugulares removed, i currently still have one at base of skull on left side, its been stunned by the gamma knife. Last year i had one glomus removed from thyroid, i also had a small carcinoma. And in June i had a right side carotid body tumor removed which was absolutley horrendous. Two days after surgery i coulnt breathe where all the swelling was building up around my vocal chords, so i had a tracheotomy for few weeks. I also couldnt swallow food or drink for three months, and had a P.E.G. tube put in. Plus my voice went completley, i never thought it would all come back, i was that ill. I really thought my time had come, honest. I was so scared. But my surgeon is so amazing and skillfull, and promised me, none of the nerves were cut, just badly bruised so it would all come back.

    Now im waiting to return to work, and eating and drinking, and shouting at my husband!
    So please have faith, no matter how bad you get, hold on, it will improve, this is 2006, more and more is known about this every day.
    Im also awaiting a test to see if my son carries the faulty gene responsible for the tumor being passed on through the family. I hope to god he doesnt have it. But if he does we will deal with it. We have to . Im not just gonna let this thing beat us, no way. Keep going everyone. xxxx

    Has anyone had any smptoms of another condition closely related to glomus tumors, called pheochromocytoma? Basically, its a tumor on or around the adrenal gland in stomach/abdomen. It secretes a hormone called catecholamines, which some glomus tumors sometimes secrete to. I am undergoing tests to see if i have this condition, i have all the symptoms except the one they want which is catecholamines in my urine!! I get very flushed, red from shoulders upwards, bp goes up to 190/110, severe headache, and excessive sweating. It lasts for about 20 mins.Its hell. It reminds me of what cold turkey must feel like, but worse. The pain is horrendous, i have to take morphine regularly. I have read a lot about it on the net, and there does seem to be a connection. But my doctors are baffled because they cant find no evidence to suggest a tumor on my adrenal gland. So im still waiting. Keep smiling everyone, i'll smile a lopsided one for you, cuz, no left facial nerve, ha ha such is the delight of this fabulous disease.xxxxx
  • MOFarmer
    MOFarmer Member Posts: 1
    #9
    corri said:

    Has anyone had any smptoms of another condition closely related to glomus tumors, called pheochromocytoma? Basically, its a tumor on or around the adrenal gland in stomach/abdomen. It secretes a hormone called catecholamines, which some glomus tumors sometimes secrete to. I am undergoing tests to see if i have this condition, i have all the symptoms except the one they want which is catecholamines in my urine!! I get very flushed, red from shoulders upwards, bp goes up to 190/110, severe headache, and excessive sweating. It lasts for about 20 mins.Its hell. It reminds me of what cold turkey must feel like, but worse. The pain is horrendous, i have to take morphine regularly. I have read a lot about it on the net, and there does seem to be a connection. But my doctors are baffled because they cant find no evidence to suggest a tumor on my adrenal gland. So im still waiting. Keep smiling everyone, i'll smile a lopsided one for you, cuz, no left facial nerve, ha ha such is the delight of this fabulous disease.xxxxx

    Hi Corri- Just wanted to tell you about a site dedicated to pheochromocytoma (adrenal tumors) & paraganglioma- extra adrenal tumors. I have had a carotid body tumor paraganglioma & am being tested for metastasis as I am symptomatic & tested positive for SDHB gene mutation. This following link is to that website: http://p078.ezboard.com/bpheochromocytomasupportboard
    Best to you in your recovery & future care.
    Regards, MOFarmer
  • kate100
    kate100 Member Posts: 7
    #10
    MOFarmer said:

    Hi Corri- Just wanted to tell you about a site dedicated to pheochromocytoma (adrenal tumors) & paraganglioma- extra adrenal tumors. I have had a carotid body tumor paraganglioma & am being tested for metastasis as I am symptomatic & tested positive for SDHB gene mutation. This following link is to that website: http://p078.ezboard.com/bpheochromocytomasupportboard
    Best to you in your recovery & future care.
    Regards, MOFarmer

    Hi -
    My name is Kate. I am 34yrs old and was diagnosed with malignant abdominal paraganglioma (extra-adrenal paraganglioma). I am wondering if anyone else has had this diagnosis or if anyone has tried 111 octreotide therapy or 90Y DOTA-try3-Octreotide therapy? We have already tried 131MIBG therapy but did not have any success (I still believe in the therapy however). No one is willing to operate and we are running out of options. If anyone has this type of cancer and/or any suggestions, we would love to hear from you.
    Thanks!
    Kate
  • egge
    egge Member Posts: 20
    #11
    marciewhipple said:

    I just stumbled on one of your postings. I am a 38 year-old mom of 3 boys and wife to a radiation oncologist. I had my first glomus tumor removed when I was 21, and the first recurrence removed at 23. After being clean for 10 years I was diagnosed w/ metastatic disease. The little bugger had invaded my lungs, spine and about 3 or 4 other places. The only treatment that I received at the time was radiation to my spine. Two years ago we found another glomus near my tympanic bone (inner ear). Apparently once again- part of the original. I had gamma knife treatment at Mayo in Nov. 2003. Currently I am under the care of an oncologist and I have monthly treatments of Sandostatin and Zomeda, the Sandostatin for the tumor itself, the Zomeda to strengthen my bones from all of the damage. As you mentioned in your posting, we are extremely rare. I do have someone that I correspond with that is back in New York that has an almost identical situation as I have. We need to keep track of each other. Right now I have no active disease that we can trace. Nothing shows on PET, and there is just shadowing on MRI and CT. Let me know what is up with you!

    I hope that all is well with you!

    Sincerely,

    Marcie Whipple

    Sorry it took me a long time to reply, I don't check this site as often as I should. I do hope you are doing ok. Did you have scans every year? Darin is doing fine, we do have another check-up coming up in June, so we shall see.
  • egge
    egge Member Posts: 20
    #12
    marciewhipple said:

    I just stumbled on one of your postings. I am a 38 year-old mom of 3 boys and wife to a radiation oncologist. I had my first glomus tumor removed when I was 21, and the first recurrence removed at 23. After being clean for 10 years I was diagnosed w/ metastatic disease. The little bugger had invaded my lungs, spine and about 3 or 4 other places. The only treatment that I received at the time was radiation to my spine. Two years ago we found another glomus near my tympanic bone (inner ear). Apparently once again- part of the original. I had gamma knife treatment at Mayo in Nov. 2003. Currently I am under the care of an oncologist and I have monthly treatments of Sandostatin and Zomeda, the Sandostatin for the tumor itself, the Zomeda to strengthen my bones from all of the damage. As you mentioned in your posting, we are extremely rare. I do have someone that I correspond with that is back in New York that has an almost identical situation as I have. We need to keep track of each other. Right now I have no active disease that we can trace. Nothing shows on PET, and there is just shadowing on MRI and CT. Let me know what is up with you!

    I hope that all is well with you!

    Sincerely,

    Marcie Whipple

    Hello Marcie
    I am glad you have no active disease as of now. Those are good news. Darin had a Pet scan last June 05, nothing show so far so good. We are going back to Mayo for a yearly check-up June 06 so we shall see.
    Who was your doctor at Mayo? Do you still go there? to MN? Let me know so we can compare notes.
    I hope you are feeling great and I promise I will keep on checking this site more often.
    Sincerely,
    Jessica Egge
  • passiton
    passiton Member Posts: 1
    #13
    marciewhipple said:

    I just stumbled on one of your postings. I am a 38 year-old mom of 3 boys and wife to a radiation oncologist. I had my first glomus tumor removed when I was 21, and the first recurrence removed at 23. After being clean for 10 years I was diagnosed w/ metastatic disease. The little bugger had invaded my lungs, spine and about 3 or 4 other places. The only treatment that I received at the time was radiation to my spine. Two years ago we found another glomus near my tympanic bone (inner ear). Apparently once again- part of the original. I had gamma knife treatment at Mayo in Nov. 2003. Currently I am under the care of an oncologist and I have monthly treatments of Sandostatin and Zomeda, the Sandostatin for the tumor itself, the Zomeda to strengthen my bones from all of the damage. As you mentioned in your posting, we are extremely rare. I do have someone that I correspond with that is back in New York that has an almost identical situation as I have. We need to keep track of each other. Right now I have no active disease that we can trace. Nothing shows on PET, and there is just shadowing on MRI and CT. Let me know what is up with you!

    I hope that all is well with you!

    Sincerely,

    Marcie Whipple

    metastatic PGL
    Marcie,
    We have very similar situations. In my early 20's I had a big glomus typanicum jugular tumor removed with csf? leak - had to learn to walk & talk again - u name it - feel they never got this whole tumor out - 14 hr. surgury, but great surgeons. I divorced right after - really don't know whole story of why? Within 5 yrs. they had returned and I did a hard 35 radiation treatments - layed in bed for almost 2 yrs. hardly able to walk, super sick, praying to die, but at least had a husband who had a roof over my head & I was eating and thankful for that. I went on some herbals & did get better. Not sure when I had my total hysterectomy - but this was needed much earlier than the age of 27 or 28 that it was done - I was so filled with tumors - scraping bowels & intestines - u name it and dr. feared it was too late to save me. This had been going on since my teens. I've also had many problems with yeast since an early age. after divorcing - no insurance - I developed carotids on both sides of my neck much bigger than golf balls; these seemed to grow fast and it took me four long yrs. trying to get some help (state & disability) just watching them grow & being sick and of course going broke once again being alone. I knew the left carotid had already been operated on where they had told me the blood flow would go to the rt. BUT that was about 12 yrs. ago - I didn't realize but my disease had already spread back then to many bones as they hurt. I did go in for surgery - they had planned on doing both sides of my jugulars on the same day - but had complications having to quit, did do the other side the very next day. Being single I had to get back to work immediately. In 07 - I would put on the happy face at work, but leave in tears as the pain was so very bad in legs & back. Had some scans done where my precious PC called wanting to see me that very night. I went to local oncologist who didn't know anything at all about this - wouldn't even take the time to look anything up about it - I asked for referral to Mayo but thru miscommunication from local oncologist it was 4 wasted days since no one would listen to me about what I had; they wanted me to stay another week then - but I couldn't afford to. but do know my last day there the nuclear bone scan was totally red showing total skull, most all of my spine, thoracic being worse along with hips, fractured pelvic bone, iliac,and femur bones along with uptake in rt. wrist. My wrist had hurt for yrs. Also mets in lungs, renal cell, bladder at the time. My father passed just last yr. from renal cell carcinoma and he also had the sdhd gene mutation. I now feel mediastinal and stomach tumors are probably back. I have had several small strokes. Many bleeds out of temporal lobe area as I have tumors there on both sides. Here it has been two long painful yrs. - once on hospice & in a wheelchair for awhile, then got to walking on my own. this was shortly after a blood transfusion needed with blood being down into the 6's. I take lortabs & 100 fentanyl patches and this doesn't seem to touch the pain. The tumors are secreting badly lately and of course sleep is horrid. I am alone and try to get by on disability check which is quite challenging. I have really no quality of life. I do have a big belief in God our savior and not scared to die - just maybe some impatience of waiting for HIS timing. I've never even had a PET scan, probably because I just have medicare. It amazes me that you are now free of disease and so good for you since you have children and a husband with knowledge of radiation. I got so sick having radiation on both sides of ears, and created much scar tissue to the point where they can hardly read head scans anymore. I have sent records several places, but seems no one even wants to take me on as a patient - any ideas or suggestions. Have you had genetic testing? It sure is a challenging disease and esp. to have it your whole adult life. would love to hear from you. god bless pass it on

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