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#54239 01-01-2004 09:33 AM | Joined: Oct 2003 Posts: 52 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Oct 2003 Posts: 52 | It is with a heavy heart that I am writing this email but we are not giving up hope. Rosie had wrote back to me awhile back questioning if Marcy's extensive pain could be more then post op complications. Sometimes I feel that doctors really don't know much. Marcy has been in such pain since her radical neck dissection. This last Sunday we had to take her to the ER. That which a doctor 2 weeks ago told her was nothing has turned up to be tumor instead. How could he have let this go. Two weeks went by and it kept growing and her pain was beyond belief. They took a MRI and now have told us the tumor is on the bone around her cervical spinal cord and her skull. They are telling us she doesn't have long but I am not buying anything they have to say. They told her she may beable to try a procedure called a Gamma knife for her tumor on her bone. They said it would help with her pain and extend her life expectany. The day before that a differant doctor had told us there was nothing they could do. Sometimes I feel doctors just don't have a clue. If you feel something is wrong believe yourself not the doctors we have learned that much. Please keep Marcy in your prayers that she will beable to try this procedure and she will beable4 to stay with us and her 4 year old daughter. We do believe in miracles.
Love Michelle
Michelle, sister to Marcy Dx January 03, partial glossectomy/selective neck dissection T2N1MO/recurrence June 03, radiation and chemo/recurrence Dec. 03 mets to spine and base of skull//palliative care//lost her April 10th 2004 Age of 32
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#54240 01-01-2004 05:15 PM | Joined: Dec 2003 Posts: 528 "OCF Down Under" "Above & Beyond" Member (500+ posts) | "OCF Down Under" "Above & Beyond" Member (500+ posts) Joined: Dec 2003 Posts: 528 | Dear Michelle I am so very sorry to hear your news of Marcy. I send love and thoughts for a positive outcome to you all. You are right, miracles do happen. As Wayne W Dyer says: 'you'll see it when you believe it'. Love from Helen
RHTonsil SCC Stage IV tx completed May 03
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#54241 01-01-2004 05:50 PM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2003 Posts: 1,163 | Dear Michelle,
I am so sad and sorry to hear of your sisters reocurance. Please know that everyone who reads your post will be praying for Marcy. Please keep us posted on how she is doing. Your Friend, Daniel God Bless both of you. I am also from the great state of Wisconsin!!!
Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.
Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06
Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
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#54242 01-02-2004 06:49 AM | Joined: Dec 2003 Posts: 8 Member | Member Joined: Dec 2003 Posts: 8 | Hi Michelle, I can easily understand your frustration. It's hard sometimes not to just feel "like a number" when dealing with Dr's (who see this everyday)and seem to blow it off as normal post op complaints. It's good to check with the wonderful folks here to get real accounts of what is within "normal" but it's hard because everyone is differant. You can do this... Marcy can do this...be aggressive, be assertive, keep fighting, demand answers, or get another opinion. You can only go as far as you push!!! BIG HUGS From Wisconsin Rapids! I'm including you both in my prayers!
Caretaker/Longtime Girlfriend of Don. Dx 10/31/03 SCC Stage IV T2N3MO right tonsil/tongue base. Treatment began 12/9/03 = 35 IMRT weekdays/8 Chemos once weekly/Surgery late Feb 04
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#54243 01-02-2004 05:33 PM | Joined: Oct 2002 Posts: 546 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2002 Posts: 546 | Michelle, I am so sorry. This was one time I definitely didn't want to be right. I hate to even post anymore. So many people lately seem to be having recurrences and I feel so terrible when it seems like I can see it coming. Sometimes the symptoms are just so similar to Heather's that I want to cry. You must keep in mind, though, that every case is different. Just because the symptoms are similar doesn't mean that the outcome will be. You and Marcy have to be determined to fight this with everything you've got. I have read some good things about the Gamma knife. Hopefully Brian or someone else can offer some more info about it. I wish I could be there in person to help you. It won't be easy, but you need to try to be strong for Marcy. Rainbows & hugs, Rosie
Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.
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