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Lauren
- 22, Female
- Dekalb, IL
- United States
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Lauren's Discussions
GCT of the Sacrum, what types of treamtments have you all had? + my story!!
5 Replies
Started this discussion. Last reply by Vanessa Jan 6.
I named my tumor Herbert, now to charge him rent...
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Profile Information
- About Me:
- I am about to turn 22 and last August 24th, 2008 I was diagnosed with a Giant Cell Tumor of the sacrum. I am trying to be positive and keep my spirits up about this whole thing!
- How do GCTs affect you?
- GCT patient
- Location of primary tumor:
- Sacrum
- Date of diagnosis of primary tumor:
- August 24th, 2008
- Treatment of primary tumor:
- Embolizations of tumor site along with infusions of Zometa.
- Facility treated at for primary tumor:
- Rush University Medical Center
- Would you recommend this facility and it's Doctors to another GCT patient?
- Yes, definitely
- Recurrence? If so, where?
- Yes, sacral area
- Date of recurrence:
- June 2008
- Treatment of recurrence:
- Well, I was trying to get into this clinical trial for Denosumab and was accepted until they asked what my insurance is and I told them my insurance dropped me as soon as I went into the hospital so now I have Illinois Medicaid. They said they COULD take me but they won't because they have to register me with each doctor individually and they won't do that so now it's on to Chemo and radiation followed by Surgery. UGH!
- Facility treated at for recurrence:
- Rush university Medical Center
- Would you recommend this facility and it's Doctors to other GCT patients?
- Yes
- Tumor free?
- Working on it!
- Current GCT Status:
- The tumor was removed and came back in June, no idea how big it is or anything.
- Website:
- http://www.myspace.com/asilenthollow
Lauren's Blog
My new spine. I had the surgery!!!
Just wanted to update you all and let you know that I did in fact have the big surgery. It took nine hours lying on my stomach to complete. I had a team of surgeons that literally saved my life. They took out my sacrum and tailbone and with rods and screws they stabilized my spine. I was in the ICU for 3 days and on the 2nd night I was able to sit on the side of my bed with great assistance from 2 wonderful nurses. When I woke up from the surgery they were transferring me form t… Continue
Posted on April 3, 2009 at 10:21am — 11 Comments
On to Surgery......
Since the last time I posted, quite a few things have happened... I did have another embolization. This time after I had some bad nerve pain that was not allowing me to walk, stand, or sit for any amount of time. I had severe pain that wouldn't go away when I laid back down like it had before. It would build and build and build until it finally went down to a manageable level. I called my doc and he checked me out and recommended I get a nerve block epidural in my lumbar spine. I… Continue
Posted on February 11, 2009 at 2:53pm — 1 Comment
Zometa
Posted on December 20, 2008 at 8:12pm — 2 Comments
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suzanne
Anyway, radiation was the one thing that turned out to be effective for Ian so hopefully it will work for you too. Our doctor is trying to get denosunab approve in Canada as it isn't at the moment. Is this what you are referring to when talking about chemo?
The insurance sounds like a bit of a nightmare for you guys. We are lucky enough to have our health care covered and since a few years now there is also a good medication insurance. At least that is one thing we don't have to worry, a blessing.
Ian is good enough to be travelling. We are now in Australia which is so fortunate for us. I will say that one's appreciation of all things is greatly enhance when one feels at risk. I hope that will bring you some hope as what might be ahead for you. I really wish you the very best results with the radiation. It is a long road but what great pleasure when things turn for the best at last. Always be glad to hear more from you,
Ian sends his good wishes too
Good luck, Pauline
This is Pauline, Ian's wife. I am the one to check on this web site as Ian finds it somewhat depressing. I was quite taken with your story as there are so few with the sacrum GCT. We haven't heard much since your operation and I am just writing to say hello and let you know you are still in my thoughts. I hope things are getting better at your end. Post-op can be difficult. It was hard for us for quite some times, specially when MRI showed the tumour back... But since Ian has had his radiation therapy, it is going surprising well for him. On his last reading, which was mercifully only a Scan, bones are regrowing around the tumour. He is a lot better and has reduced his intake of morphine by more than half since last year. So, you never know what is going to help. Just wanted to wish you well and sincerely hope that you are feeling better.
Have a great day and take care. Pauline
Screw Herbert! I hope that he's dying a slow and painful death on his route to hell. I know that Bertha is dying painfully; sometimes I think about the life being sucked out of her cell by cell by a shot of denosumab in a cape.
Anyway, how's the post surgery recovery going? I hope that all is well.l if you get a chance to visit the district, I'd love to take ya around and shouw you a good time!
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