#48899 10-03-2007 10:49 AM | Joined: Apr 2007 Posts: 794 "Above & Beyond" Member (500+ posts) |  "Above & Beyond" Member (500+ posts)
Joined: Apr 2007 Posts: 794 | Hi Mandi,
I've been keeping up on your posts, you have both been such strong fighters, you can get through this. If the bug you have caught is anything like I had, you should be over it in just a few days.
I'll continue to keep you both in my prayers.
Donna
Donna
CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
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#48900 10-03-2007 04:15 PM | Joined: May 2006 Posts: 57 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: May 2006 Posts: 57 | Tomorrow he will be admitted to a nursing home.
To a man who was building hospitals when he was admitted, and I used to walk him down just to watch the construction at Hopkins ( would rather watch it than TV) it's a big blow.
Thank goodness you are all here.
I'm afraid I've lost him. The man that was bigger than life itself is leaving me.
Mandi
Stage III tonsil, Dx 8/14/2002,chemo and rad...reoccurance 8/3/07,Base of Tongue,vocal cords,stage IVA,total larynectomy and glossectomy 9/4/07 with pec flap...reoccurance Nov. '08 and Feb. '09 (positive margins remained after each operation) Second pec flap May 7, 2009. Still positive margins.
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#48901 10-03-2007 06:17 PM | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | its not over till the fat lady sings mandi amd i aint singing a note yet.
chin up love
liz
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
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#48902 10-04-2007 01:31 PM | Joined: Apr 2007 Posts: 794 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2007 Posts: 794 | Hi Mandi,
Just wondering how you are holding up...
Donna
CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
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#48903 10-05-2007 03:29 AM | Joined: Oct 2007 Posts: 1 Member | | Member
Joined: Oct 2007 Posts: 1 | HI iAM A CAREGIVER TO MY SISTER WHO HAS ORAL CANCER OF THE TONGUR TO BE HONSET WITH EVERYONE SHE IS NOT VERY OPENED ABOUT WHATS REAALY GOING ON , SHE WHATS HER FAMILY THERE , TO BE WITH HER BUT WHEN WE QUESTION , HER TREATMENT BECAUSE ANGRY .......... oK MY QUESTIONS IS SHE IS RECIEVING TOMOTHERAPY EVERYDAY , THEY JUST DISCOVED IT HAS BURNED A VERY SMALL HOLE INTO HER MAY ARTERY IN HER NECK , IS THIS NORMAL FOR THIS TYPE OF RADITION . PLEASE ANYONE SEEK HELP YOU CAN EMAIL ME AT [email protected] | | |
#48904 10-05-2007 03:54 AM | Joined: May 2007 Posts: 632 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: May 2007 Posts: 632 | Louise,
I have posted your message into a 'New Topic' under 'Message from Louise' so that you may get more replies than here. Hope that's okay
Brenda
Brenda in UK--Diagnosis 30/5/07--undifferentiated carcinoma in right jawbone and muscles. Stage 4
6/7/07--new diagnosis primary is in lung. Finished 4cycles of palliative carboplatin/gemcitabine
therapy September 07
Now dying to live!
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#48905 10-09-2007 06:07 PM | Joined: May 2006 Posts: 57 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: May 2006 Posts: 57 | Dennis is now in the nursing home. It seems like a good enough place, but he hates it. The therapists there are great though, and I hope to have him home in a few days. The main fistula, along with the incisions, are healing well, which is a blessing.
Love,
Mandi
Stage III tonsil, Dx 8/14/2002,chemo and rad...reoccurance 8/3/07,Base of Tongue,vocal cords,stage IVA,total larynectomy and glossectomy 9/4/07 with pec flap...reoccurance Nov. '08 and Feb. '09 (positive margins remained after each operation) Second pec flap May 7, 2009. Still positive margins.
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#48906 10-09-2007 07:57 PM | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | Mandi thats brilliant news,i am so happy for you both,and hope Dennis continues his improvemant.
liz
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
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#48907 10-11-2007 01:24 AM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | That's really great news Mandi. How are your kids handling all of this? And you for that matter, take care of yourself.
Minnie
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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#48908 10-13-2007 05:35 PM | Joined: May 2006 Posts: 57 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: May 2006 Posts: 57 | I'm here......that's all I can say at this point. The whole experience has been a nightmare...
Good news, Dennis came home today. Bad news, Dennis came home today.
It is all so overwhelming. I'm doing his feedings via pump, packing the wounds, taking care of the trach, suctioning, and the wound care on his open abdomen incision. Couple that with 13 meds that have to be coordinated three times a day. (All but two have to be crushed)
And try to do all the other things..........two kids trying to stay normal, running in two different directions, bills, meals......
I was told tonight by the visiting nurse that a patient is entitled to a home nurse a certain number of hours per day, if they have a trach and a feeding tube. Has anyone else ever heard of this so called "right"?
Love,
Mandi
Stage III tonsil, Dx 8/14/2002,chemo and rad...reoccurance 8/3/07,Base of Tongue,vocal cords,stage IVA,total larynectomy and glossectomy 9/4/07 with pec flap...reoccurance Nov. '08 and Feb. '09 (positive margins remained after each operation) Second pec flap May 7, 2009. Still positive margins.
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