#35754 12-20-2007 05:09 AM | Joined: Apr 2007 Posts: 794 "Above & Beyond" Member (500+ posts) | OP  "Above & Beyond" Member (500+ posts)
Joined: Apr 2007 Posts: 794 | Please keep my mom in your thoughts. She has been having a helluva a time lately. I sent her off with my dad today to see the MO. I couldn't bring myself to go--too afraid. Now I sit here and kick myself in the butt....too many questions that they will not be able to answer.
Here's what I found out so far:
He wants her to go for an MRI, even if RO doesn't think it's time. He seemed to impress that her throat has something going on. He did her thyroid test, haven't heard results....would they be available immediately? He is very concerned about the way her mouth hasn't healed. He seemed to be upset at the about of lidcaine she was using--thank goodness someone said something! that was making me neurotic.
He thought her mouth should have healed at least a month ago. >>> Gail--sorry for not calling you! just remembered right now>>>
I am going to call the MO later today, my name is on the papers to have info released to me.
Please, please pray.
As for me....I'm going to call my doctor, don't think I can deal with all this and the kids, holiday happenings, without breaking down. Jerry, I may call your doc if mine can't help.
DAMN!!! I am so mad right now.
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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#35755 12-20-2007 05:35 AM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | Hi Donna,
I have alot of experience with viscuous lidocaine as I used it for the month before my last surgery in October. That stuff is something that you can keep using more and more of until you feel you can't exist without it, much like chapstick I suspect. Also, I found out that the lidocaine itself, from me using it consantly all day, was in fact irritating the area, making it more painful. Maybe this is slowing down your moms healing process? Also, keep in mind that some of us are slow healers. The skin donor graft site from my Oct. 4th operation still hasn't healed.
Keep us posted.
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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#35756 12-20-2007 07:40 AM | Joined: May 2007 Posts: 632 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: May 2007 Posts: 632 | Oh Donna,
So sorry to hear about the new concerns--I hope your doc can give you something to help you through this--no-one is Superwoman and if anyone needs help, it's you right now. Your mom has HER doctors looking after her, and you can't do your caregiving if you're in a state!
Take care Donna and hope things are easier by Christmas
Love 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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#35757 12-20-2007 10:38 AM | Joined: Apr 2007 Posts: 794 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: Apr 2007 Posts: 794 | Hi Minnie and Bren,
Thanks for telling me abuot the lidocaine, she does use it like someone using chapstick. I've often wondered if that would slow down her healing time.
Brenda,
I spoke with my doc, he told me he can see me Sat morn or Monday. YUP...he's about that helpful. I'm ok now, thinking about getting a bottle of cabernet and having a glass later. I took a couple of advil earlier, that helped a little.
I just feel exhausted suddenly.
Has anyone heard from Teds Daughter?? Laura??
Concerned, haven't heard back from her in ages.
Thanks.
Love,
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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#35758 12-20-2007 10:38 AM | Joined: Apr 2007 Posts: 794 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: Apr 2007 Posts: 794 | Hi Minnie and Bren,
Thanks for telling me abuot the lidocaine, she does use it like someone using chapstick. I've often wondered if that would slow down her healing time.
Brenda,
I spoke with my doc, he told me he can see me Sat morn or Monday. YUP...he's about that helpful. I'm ok now, thinking about getting a bottle of cabernet and having a glass later. I took a couple of advil earlier, that helped a little.
I just feel exhausted suddenly.
Has anyone heard from Teds Daughter?? Laura??
Concerned, haven't heard back from her in ages.
Thanks.
Love,
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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#35759 12-20-2007 12:06 PM | Joined: May 2007 Posts: 632 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: May 2007 Posts: 632 | Oh boy Donna--your doc experiences sound like the way it goes in the UK!
But still go for it!
I'm gonna ring and ask for something, have managed thus far, but hate needles, have to deal with terminal condition and need more biopsies--I'm going 'totally chemical'!!
And also was wondering how Minnie is---very quiet lady???????
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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#35760 12-20-2007 01:05 PM | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I know one thing. After reading your post and Brenfran's post, I just can't feel sorry for me for getting that OC back in 4 months.. I'm mild compared to what you are going thru..
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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#35761 12-20-2007 01:27 PM | Joined: Jun 2007 Posts: 221 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jun 2007 Posts: 221 | Donna, You will be in my prayers tonight. Hang in there. Hopefully your mom's doctors can figure out whats going on and put her on the fast track to healing. When you are ready for that glass of wine let me know. I'll break out the Southern Comfort and diet wild cherry pepsi here and have a drink or three with you  You can save me a couple of those advil for in the morning  Joy
CG to Father, 75 yo with SCC of the mouth; upper maxillectomy and neck diss. performed on 5/23/07. Father also suffered heart attack during surgery and now has CHF. RT complete on 8/28/07. Cancer back 11/27/07. RT and Chemo to start on 12/17. Cancer back 6/17/08. Finally at rest 08/08/08.
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#35762 12-22-2007 08:38 PM | Joined: Apr 2007 Posts: 794 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: Apr 2007 Posts: 794 | Hi Guys!
Bren, Been thinking about you....I hate that we live so far apart, would love to come and sit with you. Will send you an e-mail some time in the next few days, running so far behind trying to do so much for my mom and Nana...
Jim--I think my mom is going to be ok, at least that's what I am hoping for. Going to try and enjoyt he holiday, and pray for tyhe best.
Joy--southern and diet cherry coke...sounds good, will have to give that a try. Still waiting for my glass of wine.
it's 2:30am, I better get to bed. This is the first time I have been on--thanks for being there!!
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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