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Kara
- 32, Female
- N. Bethesda, MD
- United States
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Kara's Discussions
Denosumab and insurance
1 Reply
Started this discussion. Last reply by Diane Stern Jun 23.
Tiredness?
Replied May 8
vertebral bodies with lytic and sclerotic areas/areas of necrosis within the soft tissue component....
1 Reply
Started this discussion. Last reply by Mary Feb 26.
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Hi all. I'm just curious if the denosumab trial is covered by insurance since it is still an experimental drug. Any thoughts?
I had my 5th embolization about a week ago with a follow up CT scan that showed lytic and sclerotic areas of the vertebral bodies with new areas of necrosis in the tumor. Additionally, the radiology reported stated that there was degernerative ost...
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- About Me:
- My tumor was found and removed from my sacrum in September/October 2007. Due to the size and associated pain, pre-surgery I became immobile causing my muscles to atrophy. Post surgery I had to go through rehabilitation to retrain my muscles to sit up, stand walk, bend, etc...
In late May, 2008 an MRI picked up a tumor recurrence. Over the summer, I went through a set of serial embolizations and this week I start the second set. I have a repeat CT scan in December. Hopefully their will be signs of calcification.
- How do GCTs affect you?
- GCT patient
- Location of primary tumor:
- Sacrum
- Date of diagnosis of primary tumor:
- Sept. 17, 2007
- Treatment of primary tumor:
- Embolization and curettage.
- Facility treated at for primary tumor:
- Barnes Jewish Hospital, Washington University in St. Louis
- Would you recommend this facility and it's Doctors to another GCT patient?
- Hmmm...possibly
- Recurrence? If so, where?
- Yes, sacrum
- Date of recurrence:
- 5/28/08
- Treatment of recurrence:
- Serial embolization and hopefully nothing else (although radiation, interferon and a few clinical trials have been mentioned).
- Facility treated at for recurrence:
- Johns Hopkins
- Would you recommend this facility and it's Doctors to other GCT patients?
- Yes
- Metastasis? If so, where?
- No
- Tumor free?
- no
- Current GCT Status:
- Tumor size is stable since June, 2008. Continued serial embolizations with follow-up CT scan in February 2009.
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Talk later and keep up the smile.
Sorry it took me so long to respond, I kinda forgot to check the site for the last month or so. I hope that all is going well with you, and that your follow-up appointment went well.
Anyway, I would love to chat some time. It really seems as if we have a very similar story (which is exactly what I'm reading Lauren posed right beneath me), and I would love to be able to speak to someone who can really empathize. Plus, we're neighbors---and who doesn't need more friends in the area! I don't know how mobile you are, but if you want, the next time I'm down in the district, maybe we can meet up and check out the new American History museum or something.
Best,
ilana
Corey was on Zometa for a year and had good results while on treatment but stopped to prepare for surgery. the dr's decided to wait 6-months and have cat scans and bone scans after surgery hoping to still be free and clear but were not so lucky. He didn't have any side effects but to watch for jaw pain, wasn't tired and went on with usual routine as a young man. he's now 21 years old. After his next week chemo we'll wait 2-weeks and have his scans again to see how productive this has been. He now has blood clots in both legs (a filter was inserted last August 2008) partial from the tumors and from inactivity from being in such pain and vicodin making him sleepy. I'll keep you's updated as to his progress.
My follow up was not a very fruitful one. Doctor informed due to steel implant, MRI and CT scan is not longer available for me. Now I only can rely on X-ray, pain and symptoms to determine if there's any recurrence.
My sciatica pain on right tight is back (very mild) and I wonder if its related to the tumor. Btw my next follow up is in Dec. Hope by that time there's improvement with my sciatica.
I just wanted to express my sympathy for you. I am so sorry that you had a recurrence. I saw that you said that you were a native of NJ and I wanted to give you an EXCELLENT EXCELLENT doctors name and location. As far as I know, he has never had a case of recurrence in the sacrum. In fact, he is a specialist in the sacrum and has done many many many many sacrectomies. He is older and is experienced; however, his age is no indicator of his energy. He has the energy of a twenty-year old. I know you are currently getting treatment at John Hopkins, about which I have heard great things, but I thought giving you some info on my doctor couldn't hurt. Right? ;)
My doctor's name is Dr. Patrick Boland and he is an attending orthopaedic surgeon at Memorial Sloan Kettering Hospital in New York, New York. His telephone number is (212) 639-8684. If you were to call to make an appointment, you should speak to Joe. He is the most efficient and pleasant secretary I have ever met.
In August of 2008, just months before your surgery, I also had mine, a 12 hour one. I had one hell of a recovery process; literally I think we can all agree that it's hell-learning to roll over, sit, stand, walk, etc.-as you have described. But now-I am happy to say that I am working again as a teacher, and I often times use nothing to assist my walking. I use a cane when walking a distance in a mall or outdoors, but in my classroom and in the hallways-I'm cane free.
Kara, I will keep you in my prayers and will ask that you too will return to your life tumor free-SOON! I am sure that with the right care you will! I know it is terribly difficult to fight this battle-constantly asking questions, fighting the blockade of incompetant secretaries, and keeping a positive attitude, but I have a feeling you are doing all of this.
Please let me know if you need any further information about Dr. Boland or his team. I know it is often hard to get information about people from their own staff when you don't know them. So-I can do all of the asking and researching for you since they are familiar with me.
I hope that your embolizations are very successful! Make sure that they do not schedule them too far apart. That is what was so unsuccesful about my initial embolizations. Normally they schedule them between 4-6 weeks apart. Well, for me that wasn't close enough. The tumor grew faster than it was shrinking. I had to leave the first hospital because they didn't give me realistic and positive options. The second hospital, Memorial Sloan Kettering-they gave me radiation which killed the tumor, and then removed the entire sacrum altogether. Anyway-I'm sorry-I'm going on and on-I just want to make sure I don't leave anything out.
Please keep in touch! I'll be thinking of you, and will keep you in my prayers. Take good care!
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