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susan's Discussions
I'm so glad to have found this site. Don't feel like the only person with GCT.
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Started this discussion. Last reply by lottie Apr 9.
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Corey put up a tremendous fight but was very tired. He closed his eyes and took his last breath while in my arms. He is now my big angel and will always be watching over me. I never left his side...he asked "never leave me Mom" and I stayed with h...
Hello to all and thank you for all the prayers for Corey. I brought him back to the hospital November 5th for his hip bed sore and both heels. With no appetite and weight loss, the sores aren't healing well. Arrangements are made to hospitalize fo...
Corey finished his last set of chemo treatments and had scans which showed increased activity in the pelvic/sacrum tumors.
We are waiting to hear of the date for the clinical trial. There are a few but which does he qualify for, we'll find out. Th...
On May 15, 2009 Corey was admitted to the hospital for severe cronic pain in the back of both thighs/knees. Within 2 days he had new MRI & CT Scans which showed that the tumors had taken over since mid February 2009, growing larger on the sacrum (...
Profile Information
- About Me:
- i'm mom of son corey (*21 yrs old) who's had numerous gct
- How do GCTs affect you?
- Family member of GCT patient
- Location of primary tumor:
- left fibula @ knee
- Date of diagnosis of primary tumor:
- september 2002
- Treatment of primary tumor:
- surgery, removed tumor
- Facility treated at for primary tumor:
- university of chicago, illinois
- Would you recommend this facility and it's Doctors to another GCT patient?
- definately
- Recurrence? If so, where?
- fibula below left knee
- Date of recurrence:
- 10/2003
- Treatment of recurrence:
- removed part of the fibula, stapled to tendon. another recurrence -12/2003, then radiation therapy
- Facility treated at for recurrence:
- university of chicago, il
- Would you recommend this facility and it's Doctors to other GCT patients?
- definately
- Metastasis? If so, where?
- ankle, sacrum, hip, lungs, liver, shoulder
- Date of metastasis discovery:
- 3/2003 - ankle, 12/2003 - sacrum, 1/2006 - lungs, 10/2006,-hip, 7/2008 - sacrum, liver, shoulder, hip
- Treatment of metastasis:
- ankle filled w/cement, sacrum was reconstructed and radiation & chemo, lungs w/chemo, hip w/radiation, then zometa for a year ending 6/2007 to remove the rods and bolts from the sacrum (causing problems). embollization of sacrum in '03. going through chemo right now for the new tumors.
- Facility treated at for metastasis:
- university of chicago, il
- Would you recommend this facility and it's Doctors to a fellow GCT patient?
- definately
- Tumor free?
- no
- Current GCT Status:
- had three rounds of chemo 11/08-12/08 and ct shows progress. 1/24/09 corey has pinched nerve in his back (pain in right thigh) from his sacral tumor pressing on the spine. It sure has caused a lot of trouble. he's currently in the hospital awaiting news of next step (in a great deal of pain). An MRI was done to confirm. Corey also started another 3-month round of chem therapy since we've had good results. Will update as to drugs being given and results.
Another Setback
On Saturday, May 16, 2009 Corey was in pain, thinking his RSD was really acting up since we've had so many rainy days consecutively. Attending my granddaughter's birthday, Corey called and said he wanted to go to the hospital. Dad and I come home early (he was at home) and I ortho resident on duty and explained to him what has happened. He suggests vicodin to help with the pain so I give that to Corey and hours later, no relief. At 4:00am I decided to take him to the ER anyway. So up to Chicago we go. X-rays are taken then MRI & CT-scans are taken and things do not look good. The tumors on the liver & pelvis, which were shrinking in January have grown & multiplied. I am numb. So Dr. Nachman comes up with another new chemotherapy treatment of vincristine & actomycin-d (both 1x injection)and cytoxan (6x's every 12 hours) all in 3-days. Of course they gave him zofran for nausea and it worked. Now we just wait for 7-10 days for next MRI to see improvement. His pain is in both legs, behind the knees and into thighs and says he feels like being beat up with baseball bat. He is still on methadone 10mg for the DVT's in November 2008 & January 2009 along with the dilaudid iv, and a new pill for nerve endings and ritalin 5mg to counteract the drugs so he doesn't sleep 24-7. Corey also takes neurontin 900mg & clomazepan 1mg for his RSD, elavil 50mg for anxiety. His hair is just starting to come in from his last round of chem in January and now he'll loose it again (tha's a big deal for him). In hindsight, I think of his symptons & put them together it makes sense to me - incontinenet is worse, pain that won't go away in thighs, no appetite. But I can't dwell on that, we have to look to the future. Hopefully we can go home in a few more days, after they get his pain controlled with oral meds. Wiill keep you all updated soon.
Susan's Blog
Corey is at rest 11/19/2009 @ 1:10PM
Corey put up a tremendous fight but was very tired. He closed his eyes and took his last breath while in my arms. He is now my big angel and will always be watching over me. I never left his side...he asked "never leave me Mom" and I stayed with him to the van to carry him to the funeral home. At the hospital they made a plaster print of his hand raised on a heart shape...just beautiful...with all the lines of his hand.
He was always so funny...the nurses loved to care for him...he touched their… Continue
He was always so funny...the nurses loved to care for him...he touched their… Continue
Posted on November 24, 2009 at 8:34pm — 6 Comments
Uncontrollable Tumors for Corey
Hello to all and thank you for all the prayers for Corey. I brought him back to the hospital November 5th for his hip bed sore and both heels. With no appetite and weight loss, the sores aren't healing well. Arrangements are made to hospitalize for antibiotics and nutrition and blood transfusion with a hemoglobin at 6.0. Two units prior to the 5th, 1 unit the day of admission...2 days later his count was back down to 6.4. CT-scans were done..neck to pelvis...we got news on Tuesday morning, Nov 1… Continue
Posted on November 13, 2009 at 3:26pm — 5 Comments
Clinical Trial is up next.
Corey finished his last set of chemo treatments and had scans which showed increased activity in the pelvic/sacrum tumors.
We are waiting to hear of the date for the clinical trial. There are a few but which does he qualify for, we'll find out. The tumors cause nausea...I am giving him home infusions of Zofran..and sweating.
Corey sleeps alot due to the pain meds he is taking. The nurses say they have never seen a patient on such high doses.
Will let you all know what & when....I promise! Ta… Continue
We are waiting to hear of the date for the clinical trial. There are a few but which does he qualify for, we'll find out. The tumors cause nausea...I am giving him home infusions of Zofran..and sweating.
Corey sleeps alot due to the pain meds he is taking. The nurses say they have never seen a patient on such high doses.
Will let you all know what & when....I promise! Ta… Continue
Posted on October 18, 2009 at 8:15pm — 2 Comments
Please keep Corey in your prayers
On May 15, 2009 Corey was admitted to the hospital for severe cronic pain in the back of both thighs/knees. Within 2 days he had new MRI & CT Scans which showed that the tumors had taken over since mid February 2009, growing larger on the sacrum (which is pressing against the siatic nerve causing the pain) and liver. New tumors located on the pelvic bone and tissue. So he has stopped the Zometa (which was productive 2 years ago)and he has been on since February 2009. He is on new chemotherap… Continue
Posted on June 12, 2009 at 9:00pm — 8 Comments
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Keep in touch also! Lauren
I too have a son who is 21 years old and I can hardly imagine how difficult it must be for a young man to suffer through this .
For myself, twice a day oxycontin or hydromorph with dilaudid as an in between back-up has been nearly miraculous in giving me back my life.
I know that these narcotics are frowned upon in some circles, but under proper supervision, ( it took me several weeks seeing the doctor 2x weekly to get the proper dosage which is constantly readjusted) they really make a difference. Certainly in Canada we are lucky that all drugs are paid for by the gov't but, here at least, these opiates allow me to function in a nearly normal fashion. My doctor at the palliative care clinic has proven to me that pain is not something we must suffer. Nor do I have any negative side affects that a normal person would have on these drugs, in fact I believe they have even helped me deal with incontinence a little better.
I know the pain is excruciating and the road to recovery long and full of highs and lows. The night before my first operation my original surgeon told me for the first time that I would never have control of my bladder or sexual function ever again . Only a few days later he was proven wrong.
When things go well the joy is boundless. Over the past four years I have had many days of joy and sorrow. As I'm sure you have had as well.
I wish you the all the best as we try what treatments we can and wait for the science to do its work
Ian
Ilana's GCT of the sacrum was 12cm(h)x9.5cm(w)x11cm(d). We were at the doctor yesterday and the x-ray shows that bone in her pelvis is starting to regrow. The denosumab seems to be working well. She'll have an MRI and chest CT in 3 weeks. I can't wait to see the results!
I a so sorry to hear all the crazyness that Cory has gone through. How is he doing now? If you have a free moment, I was wondering if you could tell me about his experience on zometa. I'm wondering what kind of side effects he had from this treatment and if it was helpful for him?
Kara
I am so sorry to read that your son has been through so much. I have seen how upset my parents have gotten with my two surgeries so I am sorry for what you have gone through as well. I had not heard of the tumors spreading to any other organs besides the lungs before reading your entry. Have all of his tumors been benign?