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Malignant Glomus Tumors

christina29
Posts: 1
Joined: Mar 2002

is there anyone out there that has this rare tumor that I may share my story with?! I know that I am number 29 so there are 28 of you out there and I would like to know what happened in your cases. Contact me.

CraigA
Posts: 2
Joined: Mar 2003

Christina,
Hello, my name is Craig, and I am uncertain of what type of cancer you have.. I had a bout with what I was told is "Germ Cell" cancer. The cancer stated in my lymph node system (attached itself to the lymph just behind my heart on upper left side of chest.) I am coming up on my ten year anniversary of my diagnoses, and I would like to offer you all of the support and encouragement I can.. I have recently re-married about three years ago, and my wife is also a cancer survivor..(Two separate bouts), I myself have one had one, so I count myself lucky and need to make sure that ALL people that need a little support and positive feedback receive all they can handle.. As a matter of fact, my oldest brother is now going through the final stages of his treatment for prostate cancer. (He looking like a WINNER) I like to think that the support and advise I offered him helped him to overcome this issue.. I am sure with a little help and encouragement YOU too can WIN.. I know it easy to say this, and it is hard, really hard to accept this at your point, but believe me I felt the same way when I going through my procedures.. I like to use a simple analogy that "Life" is all about changes, that nothing really stays the same all of your life.. With that thought in mine, try to think of this issue of another change in life that your are embracing.. Sure it is scary, and there is a lot of unknown's.. I cannot even imagine the thoughts in your mind, but I can tell you that if you want to win, and as you ride this storm out, you will be the stronger and better person for it. Is this going to change and your life style for the rest of your life..?? Most likely it will, and it is up to you on how well you handle it.. I know my bout has changed me, and do I like what has happened, NO.. But I do know that I did what I thought was my best effort, and now I am happy that I did. I am certain that your loved one's are very concerned, and trying their best to help, and maybe they just don't know what to do or how to help.. I know that my loved one's tried, but just could not connect with me during my time.. And I am now forever indebted to them, as I know they did there very best for me, even though I could not quite grasp their sincerity..

Christina, you can do this, and I know that you will WIN.. Looking forward to hearing about how you whipped this problem and are moving forward to the happiness and prosperity that you have and deserve..

TereB
Posts: 288
Joined: Apr 2003

Hi, my name is Tere and I have a malignant Glomus tumor. I know there are only a few of us, only 18 at the time I was diagnosed. My email address is tere@eximco.net and I would love to hear from you and exchange information. Not many doctors know about this kind of tumor. I was diagnosed in 1987 and I am the typical glomus tumor patient: female, left ear. In my case the tumor has spread and every so often I have to undergo radiation treatment. Please let me know about yourself. Perhaps we can compare notes.

patvanmoorleghe...
Posts: 2
Joined: May 2013

i was diagnosed with glomus tumor right elbow 2001, 2004 diagnosed metastatic glomus tumors both lung fields, over 25, one in pulmonary artery. may said nothing can be done for me, any info appreciated

 

email  patvanmoorleghembarry@Yahoo.com

 

 

 

 

 

 

 

 

shee
Posts: 3
Joined: Apr 2002

hi Christina, I am one of the other 28,and I have never been able to talk to anyone of the others. I would love to have someone to compare notes with since I can not find any information and the doctors know very little. Please contact me. Bridget

barosebud
Posts: 12
Joined: Oct 2003

Hi Christina,
My husband was diagnosed with the same tumor 2 years ago. His has spread to bone and liver He just finished a series of radionuclide treatments in Rotterdam, NL last year. His tumors are shrinking and he feels great. I would love to hear your story an share what information we might have . We met several Americans having the same treatment in Rotterdam. This study is also used to treat islet cell tumors with good results.
Take Care. Let me know and I'll give you my email address. Beth

egge
Posts: 20
Joined: Jul 2004

My husband a very handsome police seargent (35 years old) was diagnosed with this kind of tumor. 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!

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