Please keep Corey in your prayers

[susan]

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 chemotherapy of Vincristine, Actonmycin-D and Cytoxan. Went home on the 30th with pain under control. June 7th we returned to the hospital with worse pain in the left leg only. Corey has just started his second round of chemo and will have scans again in week or two, to see the progress. He will have a nerve block on Monday, June 15th, an injection into the siatic nerve. If it works, then he will have a pain pump implanted within a few days. He has relief with dilaudid (pca pump)8mg continuous and 4mg on demand along with methadone 10mg, neurontin 900mg, klonopin 1mg, klonodine .3mg, fioricet, zofran 4mg, and lovenox 120. I will keep you all updated to his progress. God Bless, Susan
6/15/2009 - Corey went for a siatic nerve block today, we were very hopeful after all the good things we'd hears, but it didn't work. Two dr's tried and couldn't get it with the ultrassound. Dr. Nachman (hematology/oncologist) will be re-evaluating his time span of therapy treatments. His pain dr. gave him "marinol" this evening and one hour later, his stomach and leg were feeling better. Will keep you updated. god Bless.

7/13/2009 - Sorry I didn't keep up..so much has happened. Since, Corey has had an Intrethecal Pain Therapy Pump inserted (surgery) on 6/23/09 and has been 99% pain free since. It contains dilaudid, klonodine, and lidocaine. The meds are so concentrate, it gets refilled in (3) months. The pump is in the left side of the abdomen and the line is inserted in the spine. A trial was done (4) days ahead of time to make sure it would work. We were home on 6/30/09 only to return the following day, Corey woke up not feeling good, to find out he is having withdrawals from all the pain meds he was on. We returned to the hospital on 7/01/2009 for 5 days to get him feeling better. Now taking Methadone, decreasing every (3-4) days til he's done. He is having some infection at the incision site and treating with antibiotics and ointment. He is due to have chemo again on this Wednesday, the 15th, unless they decide to wait due to this infection. Thank you all for your prayers and comments!! Will keep in touch. God Bless.

[Diane Stern]

Susan,
My heart goes out to you and Corey (and the rest of your family). I certainly know how hard this illness can be on everyone. Have your doctors considered getting Corey into the denosumab trial? Please keep us all updated and know that Corey will be in my prayers.
Diane

[Mary]

I will cerainly keep Corey in my prayers. He has had to endure so much for a young man his age. Stay strong and take care of yourself as well!
Mary

[Tara]

Im thinking of Corey & sending my love to you all. xxx

[Kara]

I'm so sorry to hear about Corey's news. Sending you and Corey all the best wishes!

[Dolina]

I am really sorry to hear about corey, that is no good.. i hope you and your family have some good news soon. prayers and all of my hope to corey..

[Kristen]

Please please please call the american cancer society and find a trial with denosumab....we are praying for you all....Kristen

[Lauren]

Oh wow! I'm so sorry for all the troubles he's having, I'm set to start chemo soon and I'm pretty sure it's the same set of drugs he's getting. My tumor came back in June and has been eating away at FUN LAUREN!!! My pain is getting out of control !!! I got denied for the denosumab trial, do you think the american cancer society could help me?

[susan]

Hi Luaren, So sorry to hear that your tumor is back. Have you had any radiation treatments or are you just set for chemo? I'm sure you have the best of doctors at Rush, we are at U of Chgo, and have your trust in them as we have. The ACS can tell you what clinical trials are available and assist you in gas and parking, things like that I have received. Please stay postive! It does take sometime to get your strength back after treatments.
Corey has had his last round of chemo in August, had CT's & Bone scans but didn't help at all...it spread like he received nothing at all. The chemo made him very sick the last 2 rounds. We are waiting to hear when he will start clinical trials...there are a couple available. The nurses said they have not had patient that has been on such high does of pain meds. He has an Intrethecal Pump in place which is like an epidural...has Sufentanyl, Clpnodine and Buvivicaine, on oral doses of Methadone, Oxycodone, Dilaudid, Neruontin, Clonopin, Ativan. He is in pretty good spirits, received a motorized scooter for his 22nd birthday Octover 1st and can get around a little easier, instead of his custom wheelchair. He had his 1st sacrum surgery back in December of 2003. After his 1st chemo & rediation treatments, he did really well and walked again without any assistance.
Please stay in touch..it's nice to have contact with others with the same interests.
Talk later Lauren.