Giant Cell Tumor Network
Denosumab Success
Half a year later, I'm on it again. And again, my apologies for not being on here sooner. Many folks have been asking about the situation. I'M ALIVE! Although pain killer withdrawals this past week have made me regret that just a bit.
So from where I left off--
Grumpy Tumor (aka peri spinal tumor) is still pretty much invisibile to radar since it hides out behind the metal cage in my back. But shortly after my last posting in the winter time, I experienced increased leg strength, loss of numbness in feet, and general less pain. FINALLY.
February scans showed about a 30% decrease in lung nodule size, but none were completely gone. Even Grumpy Tumor backed off a bunch according to these scans, which we previously had thought to be widely speculative. Another scan in June yielded similar results. That is, the tumors are about the same as they were in February.
As a result, I am starting to pick up the pieces of my life again and attempt a post-cancer existence. Unfortunately, (there's always an equally extreme down side to my story, have you noticed that?), I was on medical leave to long, and the life I came back to after recovering from 4 years of cancer wars is a jobless one, and also one wrought with withdrawals from lorazepam and oxycontin. (GO SLOWLY, no matter what they tell you, TAPER SLOWLY!)
Right now, I'm looking for work (got any leads in St. Louis?), getting over the depression of my situation, and trying to be the best son, brother, uncle, nephew, cousin, husband, in-law, friend, and even former-colleague to those who were here with me during this--this vileness.
In conclusion, none of us should have had to experience this, I think I speak for all of us, no matter where GCT cropped up on us or how it behaved. I've read the stories on this site that barely contain the fear, no, terror, of what is happening to us and can only respond with the very human knee-jerk reaction: concern -> comisery -> prayers -> and the ultimate evolution to courage. That is why Heather Evans created this site--to pass along courage for us. Thank you again, Heather.
Oh, and passing along treatment options wasn't a bad idea either.
The only thing missing that I do not see on this site is a page for those who did not have a victory. I encourage the friends and loved ones signed on to please share with us if this awful finality of GCT should manifest. It will do good to honor the memory of those we've lost, if any.
So my final advice, skip cyberknife, radiation, chemo, and interferon as they are a waste of time. Time that you become dependent upon higher and higher dosages of pain killers or anxiety medication. Go straight for the kill--get into a denosumab trial. Period.
So from where I left off--
Grumpy Tumor (aka peri spinal tumor) is still pretty much invisibile to radar since it hides out behind the metal cage in my back. But shortly after my last posting in the winter time, I experienced increased leg strength, loss of numbness in feet, and general less pain. FINALLY.
February scans showed about a 30% decrease in lung nodule size, but none were completely gone. Even Grumpy Tumor backed off a bunch according to these scans, which we previously had thought to be widely speculative. Another scan in June yielded similar results. That is, the tumors are about the same as they were in February.
As a result, I am starting to pick up the pieces of my life again and attempt a post-cancer existence. Unfortunately, (there's always an equally extreme down side to my story, have you noticed that?), I was on medical leave to long, and the life I came back to after recovering from 4 years of cancer wars is a jobless one, and also one wrought with withdrawals from lorazepam and oxycontin. (GO SLOWLY, no matter what they tell you, TAPER SLOWLY!)
Right now, I'm looking for work (got any leads in St. Louis?), getting over the depression of my situation, and trying to be the best son, brother, uncle, nephew, cousin, husband, in-law, friend, and even former-colleague to those who were here with me during this--this vileness.
In conclusion, none of us should have had to experience this, I think I speak for all of us, no matter where GCT cropped up on us or how it behaved. I've read the stories on this site that barely contain the fear, no, terror, of what is happening to us and can only respond with the very human knee-jerk reaction: concern -> comisery -> prayers -> and the ultimate evolution to courage. That is why Heather Evans created this site--to pass along courage for us. Thank you again, Heather.
Oh, and passing along treatment options wasn't a bad idea either.
The only thing missing that I do not see on this site is a page for those who did not have a victory. I encourage the friends and loved ones signed on to please share with us if this awful finality of GCT should manifest. It will do good to honor the memory of those we've lost, if any.
So my final advice, skip cyberknife, radiation, chemo, and interferon as they are a waste of time. Time that you become dependent upon higher and higher dosages of pain killers or anxiety medication. Go straight for the kill--get into a denosumab trial. Period.
Add a Comment
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Comment by Quinton on July 23, 2009 at 5:09pm - Carol, you have just enough knowledge as a psych RN to get you into trouble, you lucky duck! :-) Unfortunately, I was pretty well informed about the unavoidable addiction part of the meds. But in my case, knowing was only 10% of the battle. Things are gradually getting better. You have the right of it on the patience front. Hang in there and keep us posted. We (my family) think about you and all the rest of the folks here a ton.
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Comment by CAROL on July 20, 2009 at 6:15am - I was so glad to read your post . I am a psych RN You are right to taper off those meds. Detox takes a while. no one tells you they are addicting. After all I work with I was so afraid to take meds when I had sx. Lucky I did not need much. My gct seems so much simpler than a spine. I am 1 yr now. It has been so up & down I. I have had problems walking now OK I reall y appreciate this site. It has made me more patient My dr thought I should recover quicker. But the sharing of others recovery was not that quick. You are in my prayers . You have had a rough road LOL carol
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Comment by Quinton on July 9, 2009 at 3:09pm
- Thank you! A broken secrum is no laughing matter. When I heard about that, I thought about the bone graft I'd had done in that region. Youch is an understatement. Blake sounds like he's hanging in there very well, though. Thanks for the prayers and thoughts. Back at you! Q
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Comment by Kristen on July 8, 2009 at 7:57pm - Q: I am so glad to hear from you again and yet so sorry for you and all that suffer from the GCT...Wish I could help in some small way but all I can do is keep praying. Blake was found not eligible for the trial but for now he is doing very well...at least there is denosumab! I also thank the Lord for Heather...this had been such a comfort and blessing....Hang in there and keep fighting the good fight...I think of you often and keep you and everyone in my prayers.....Much love....k10
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