#11743 09-03-2007 03:59 AM | Joined: May 2007 Posts: 632 "Above & Beyond" Member (300+ posts) |  "Above & Beyond" Member (300+ posts)
Joined: May 2007 Posts: 632 | A party sounds like a great idea Minnie---how did it all go???
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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#11744 09-03-2007 06:25 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | OP Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | The cookout went very well, although watching everyone else eat kind of sucked! Having my brother here is great, he has such a calming affect on me and my girls just adore him. He's like the guy that men and women all love. I have started a Carepage to keep everyone updated for when I'm in the hospital and can't post here. My daughters will post here and on the carepage. The care page is www.carepages.com and the name of my page is minnieandfamily. I feel pretty good tonight, can't sleep as usual but might break down and take the anti-anxiety pill that puts me in zombie mode for about 12 hours! Love to all, 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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#11745 09-04-2007 01:27 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Minnie, thank you for sharing your carepage with us....I have already signed onto it....I am thinking of you Sweetie.....let me know how your visit goes tomorrow and when you would like to meet up....Love, Carol
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
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#11746 09-04-2007 02:35 AM | Joined: Jun 2007 Posts: 718 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2007 Posts: 718 | Wow, Minnie,
I took a look at the photos on your Care Page, what a beautiful and large family you have. With a support team like that, I imagine you will sail through this.
How funny that your girls are having girls. On a much smaller scale, my family is the same way. I only have sisters and then when they had children, they were girls and so was mine.
I decided to break the girl cycle by adopting a 3 year old boy 9 years ago. When I told one of my sisters, she responded with..."A boy? we don't know anything about boys!" And, everyday I have to admit she is right. Boys are different...in a lot of ways. He's a load of fun, but wow, has he tested my patience (or lack of) at times.
Good luck! And, thanks for sharing so much with the OCF. I admire you in a multitude of ways. I will be praying for you and your beautiful family.
God Bless,
Margaret
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C/G: Husband, 48 (at time of dx)
Dx 5/18/07 SCC, BOT, lymph node involvement. T1N2BM0. (Stage 4a, G2/3)
Tx 6/18 - 8/3/07, IMRT x 33 Cisplatin x3 (stopped after 1st dose due to hearing issues). Weekly Erbitux started 6/27/07 completed 8/6/07.
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#11747 09-04-2007 04:16 AM | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | "cookout went very well, although watching everyone else eat kind of sucked!"
You know how much I can relate to this one! You're in my thoughts today and every day.
Nelie
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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#11748 09-04-2007 10:25 AM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Apr 2004 Posts: 837 | Minnie,
I haven't been on here in a couple of weeks, and I was absolutely stunned when I saw this thread. I'm so glad you're getting additional opinions -- it sounds like you're set up well for JH and DF. If you'd like any other contacts while you're in Boston, please send me a PM.
You and your family will certainly be in my prayers.
Cathy
Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
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#11749 09-04-2007 10:26 AM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Apr 2004 Posts: 837 |
Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
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#11750 09-04-2007 05:11 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | OP Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | I created a care page to keep everyone updated in case I can't get on the computer for awhile. My oldest daughter will keep the care page updated. It's www.carepages.com and the name of my page is minnieandfamily. I'd love to hear from all of you, I'm learning that reading positive words from the people on this site is priceless and so needed. Love to all, 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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#11751 09-05-2007 02:23 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | OP Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | Hello everyone,
My appointment at John Hopkins today was very positive and very optimistic. This facility is amazing, I can't put into words how well run it is and how professional and caring every single person working there is. The doctor spent over a hour talking to me, made me feel like a human rather then just his afternoon appointment. He said the tumor is relatively small and localized and he feels it will be a partial glossectomy rather the the semi glossectomy my other doctor was talking about doing. He felt very strongly that I will get back to 90-95% of my speech and that eating won't be any tougher on me than it is right now. Of course that will all take time and therapy, but just knowing it's there for me is a blessing.
He also feels like he may be able to remove the cancerous area at an angle that saves much of the right side of my tongue. If this can be done, then I would only need a graft to close the defect in my tongue, taken from my thigh. If they end up needing to take more, than I will have the free flap from my wrist. Either way, his plan is just so upbeat and he made us all feel very good. My brother asked him to rate the seriousness of my situation from a 1-5 and he instantly said a 2. That made us all feel good. this isn't a death sentence by any means, and he made sure I knew that.
No surgery date yet but we will have that within the next couple of days.
So, the beginning of my new journey is starting out on a positive note........let's all pray that it stays that way!
When we walked into the waiting room, and I saw the OCF brochure sitting on the tables.......I just knew I was at the right place!
Much love to all,
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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#11752 09-05-2007 03:05 PM | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Minnie,
You have made my day. I have been thinking about you all day and this is such great news.
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
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