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Kara 32, Female N. Bethesda, MD United States: Share

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Denosumab Question
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Started this discussion. Last reply by Mary Nov 24.

Denosumab and insurance
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Started this discussion. Last reply by Diane Stern Jun 23.

vertebral bodies with lytic and sclerotic areas/areas of necrosis within the soft tissue component....
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Started this discussion. Last reply by Mary Feb 26.

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Kara added a discussion

Denosumab Question

Does anyone know who the best person to contact about Denosumab is at the Washington Cancer Institute?

November 21

Kellie DeKalb and Kara are now friends

October 17

Kara and Christina Alamirie are now friends

October 17

Kara added a discussion

Denosumab and insurance

Hi all. I'm just curious if the denosumab trial is covered by insurance since it is still an experimental drug. Any thoughts?

June 23

Kara and susan are now friends

April 15

Kara and ilana are now friends

March 9

Kara and minn are now friends

March 4

Kara added a discussion

vertebral bodies with lytic and sclerotic areas/areas of necrosis within the soft tissue component....

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 osteo…

February 24

Profile Information

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?

Tumor free?

Current GCT Status:

Tumor size is stable since June, 2008. Continued serial embolizations with follow-up CT scan in February 2009.

Comment Wall (13 comments)

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At 12:00am on October 18, 2009, Christina Alamirie said…: If I were you, I would look into Denosumab before all the slots fill up. It sounds like you meet a lot of the requirements. Of course that is completely your decision, but nothing has worked so far in my case and this drug seems to have 87% improvement rate! Any % improvement rate for me would be great, awesome, wonderful, whatever! I read your stories and posts and a lot of what your doctors told you were the same things I was being told about my tumor! Stable on one visit, larger the next. Smaller in one area, larger in another. All these treatments and nothing working! I'm new to this whole clinical trial thing, so if you or anyone else decides to go ahead with it as well, maybe we can travel together and be each others support! Just a thought! We all can use someone who can relate!!

At 1:49pm on May 8, 2009, Lauren said…: hahaha Oh believe me! I did feel the same way, like someone was tearing me apart very very slowly. OH well, I am really happy and grateful for everything. I have my first MRI on June 3rd to check for any recurrences. Damn tumors!!! I will beat it up if it even thinks about coming back!!!

At 7:37pm on April 9, 2009, susan said…: Hi Kara, There weren't any sideeffects for him on the Zometa. He had a treatment in March and due for anoth in week or so. The last time he was on Zometa, his bones started regrowing, if that makes sense. We'll have scans in 2=more months and we're really hopeful. Like his doctors said, just another hill to climb - that;s how we look at things, since they never seem to end for him. He's looking forward to go to the casino for his first time with a good friend. He is starting to feel better.
Talk later and keep up the smile.

At 3:52pm on March 9, 2009, ilana said…: Hi Kara,

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

At 8:34pm on March 4, 2009, susan said…: Kara,
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.

At 11:30pm on December 24, 2008, Lauren said…: Wow, yes! I would love to chat more in detail/ This is so crazy, we have like the exact same story except when I was in the hospital they just doped me up non stop for a month. Like really super totally high because they weren't going to cut it out and they were taking so long to do the first embolization. I think they were still working out their plan of attack. I have another embolization in January... I am so very impatient haha um my e-mail is laurenmunguia@yahoo.com, :) This is so great to have so much in common, it's going to be great to talk to you!

At 10:42am on December 21, 2008, Lauren said…: yea when iwas admitted to the hospital my tumor was causing me so much pain i was unable to sit, lay down, and could hardly walk but they couldn't take mine out because they said it was in a bad spot and i could lose the feeling in my legs and the ability to use the bathroom on my own you know (i forget the term for it right now). But no matter what if the zometa works even if I have another bad reaction I will continue it haha if it helps in any way i am game! Plus right now I am unable to work because I still cannot walk more than a few feet without terrible nerve pain in my legs and extreme pain in my back unlike any other I have had before... this whole thing is just os confusing, I am so glad for this group because I try to talk to my friends and it helps a little but to talk to all of you who have experienced this is the best kind of help out there!!

At 7:50pm on December 20, 2008, Lauren said…: well since my GCT is on my sacrum it has broken through and fractured it several times leaving me with some bone loss there. The drug Zometa is usually prescribed for Osteoporosis to strengthen bones. It's a monthly infusion and I had my first about a week ago, IT WAS AWFUL!!! I hope it gets better but I was up barfing my guts out for 3 days straight, I was feverish and had SEVERE BONE PAIN, all side effects of the drug. I am going to make sure to talk to the doc about it on Monday when I am supposed to call because I get them here in town but my treatment is being overseen out of Chicago. Blah, I am so scared for the next round!

At 1:46am on November 3, 2008, Raphael said…: Hi Kara.
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.

At 9:25pm on November 2, 2008, Vanessa said…: HI Kara. My name is Vanessa. I saw that you left a message on my aunt Carol's site. I am actually the GCT patient. I also had my tumor in the sacrum. Please read my page for the detailed account (its so weird actually writing it down-this is the first places I have done so...) if you would like.
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!