#66087 10-05-2007 12:24 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | OP  Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | posted October 05, 2007 05:10 PM
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Hello everyone.....it's Minnie, me, not a daughter, not my mom....it's actually me! I just walked down the hall of Hopkins fantastic hospital halls to use the family computer room. Of course I have my usual entourage with me, lol. I am talking to you as the most blessed woman on this planet. When the doctors got into my mouth during the surgery, they found the tumor itself to be very small, in between a stage 1 and stage 2 but leaning more to a stage 1. They found that it had alot of scar tissue around it that was making it look bigger on the PET I had done a few weeks ago. They also found that it was very superficial, so I lost less than one third of my tongue and that was taken at an angle that leave me most of the front of my tongue. They took biopsies in eight other spots in my mouth, looking for field cancerization, and all came back negative. I had a graft rather than a free flap to my tongue, so it has a huge bolster holding it in my mouth right now and that's uncomfortable but I'm perfectly ok with that! The best news is that he did't find any evidence of any cancer in my neck, the node had dissapeared a few days ago, when my head cold left me, he looked at the PET, and he decided not to do a neck disection. No chemo, no radiation, he said he will watch me very closely for the next few months and, of course, for the rest of my life, but that he truly feels I will be ok. He is the top head and neck cancer specialist at Hopkins so I feel very good. Best of all........NO TRACH!!! I was so, so very happy about that. I'm having trouble with low blood pressure for the moment but I usually do so will wait it out. I'm hoping to go home tomorrow (can you all believe it!) and I will write again later tonight when they let me out of bed again.
So much love to all of you, thank you for supporting me and always listening to me.
Love,
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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#66088 10-05-2007 12:52 PM | Joined: Aug 2005 Posts: 158 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Aug 2005 Posts: 158 | That is absolutely FANNNNNNTASTIC Minnie. There IS power we know nothing about. Keep on keeping on the recovery road. You and yours remain in our thoughts and prayers.
Bill
No love, no friendship can cross the path of our destiny without leaving some mark on it forever. - Francois Mauriac
Thank you for leaving your mark.
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#66089 10-05-2007 03:47 PM | Joined: Jul 2006 Posts: 18 Member | | Member
Joined: Jul 2006 Posts: 18 | Minnie.
So glad to hear your great news, and to hear it from you personally! Keep the healing feeling. We're keeping it for you too.
Chris & Joe
Wife & CG to Joe.
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#66090 10-05-2007 04:09 PM | Joined: Jul 2006 Posts: 388 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jul 2006 Posts: 388 | Minnie - With so many people pulling for you, plus a "little" help from above, how could it NOT help! Keep the positive news flowing! Warmly, JaneP 
Husband: 3 SCC gum and cheek cancers 2002, 2005, 2006: surgery only. Scans clear after removal of small, well differentiated, non-invasive cancers. No radiation. 4th SCC lip diagnosed 4/13/07 - in situ, removed in biopsy. More lip removed 2/8/08 - dysplasia. 2 Biopsies 3/17/09 no cancer (lichenoids)
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#66091 10-06-2007 06:27 AM | Joined: Sep 2007 Posts: 13 Member | | Member
Joined: Sep 2007 Posts: 13 | Minnie,
What GREAT news!!! You've been in my thoughts and prayers, and you just made my day! Keep up the spirit, and have a speedy recovery.
Carol | | |
#66092 10-06-2007 06:36 AM | Joined: Jul 2005 Posts: 69 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jul 2005 Posts: 69 | Minnie,
How great to hear you are up and posting! This is wonderful news and I am so happy for you and your family. I now will keep you in my thoughts for a speedy recovery. Just knowing you get to go home already has you on the road to recovery, I'm sure!
Pam
SCC Base of Tongue Stage IV- 2/04 - 40 Rads 1/2 conventional, 1/2 IMRT; 3 chemo treatments consisting of Carboplatin/Taxol/5-FU; Right Radical Neck Dissection
7/04; scans and pathology clear
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#66093 10-10-2007 07:56 AM | Joined: Jun 2006 Posts: 82 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jun 2006 Posts: 82 | Minnie,
That is the reason that more people should be given the freedom to choose where to get their medical treatment. Everyone deserves to have the best case scenario in a worst case moment. Who knows how this might have been handled at a hospital that was not as knowledgable and up-to-date with oral cancer.
Take care of yourself,
Sarah
DX on 05/01/06 with SCC of right tongue. 05/11/06 surgery-tumor 1.2cm & 4 cm clear margins & parital glos. & neck dissection with removal of 34 nodes/1 positive at 4mm)T1N1MO
35 IGRT & 3 cycles of chemo (1 cisplatin & 2 carbo-complete on 8/9/06.
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#66094 10-11-2007 07:42 AM | Joined: Apr 2006 Posts: 583 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2006 Posts: 583 | Minnie,
Oh WOW what great news.... So happy for you and all of your family!!
Continue to mend and get better. Sarah you are so Right about getting the best care possible.
Take care,
Diane
2004 SCC R.tip 1/4 tongue Oct. 2005 R. Neck SCC cancer/Chemo Cisplatin 2x/8wks. Rad. Removed Jugular vein, Lymph gland & some neck muscle. TX finished 1/20/06... B.Cancer 3/29/07 Finished 6/07 Bi-op 7/15/09 SCC in-situ, laser surgery removed from 1st. sight. Right jaw replacement 11/3/14. 9 yrs cancer free as of Jan. 2015
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#66095 12-20-2007 07:29 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | OP Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | I had my check up at Hopkins yesterday and the doc was very pleased with how my mouth looks. He said it's healing well and showed no evidence of disease. He also believes the questionable node, that I had another CT scan on a few weeks ago, is not cancer. I'll have another PET end of January and I see their reconstructive doc in January also. My doc said it's time to make me look like I'm 35.........even though I'm 46. He was very sweet and said from the mouth up I look 10 years younger! So, for now, we are happy and that's all we can ask for.
Love,
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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#66096 12-20-2007 11:59 PM | Joined: May 2007 Posts: 632 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: May 2007 Posts: 632 | So glad you're happy Minnie--and the rest of the family too!
I hope you have a peaceful, uneventful and lovely Christmas!
Brenda x
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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#66097 12-21-2007 02:37 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 | Minnie, I posted on your support page as well. That is great news. Especially right before Christmas. I hope you and that whole great gaggle of daughters and granddaughters you have celebrate a lovely Christmas with each other.
Great news about the reconstructive surgery too.
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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#66098 12-21-2007 03:18 AM | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Minnie,
That's great news. Post a piture when you're 30 again.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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#66099 12-21-2007 12:34 PM | Joined: Jun 2007 Posts: 221 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jun 2007 Posts: 221 | Minnie,
What wonderful news! So glad to hear that you are healing and heading in the right direction now.
Hope you have the most wonderful Christmas ever!
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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#66100 12-22-2007 12:27 PM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | Minnie If you get surgery to knock 10 years off your age please can he do miracles and knock 20 off me?  So pleased it has gone well for you and your family.. Sunshine.. love and hugs Helen
SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
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#66101 12-23-2007 04:03 AM | Joined: Nov 2006 Posts: 166 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Nov 2006 Posts: 166 | That is so good to read Minnie. I wish you and your family a very Merry Christmas and may the new year be nothing but positive and good.
Bill B. Dx 10-16-06 Stage 4 T2N2bM0 SCC Left Tonsil,3 nodes. 1st tx 11-28-06, last tx 1-8-07. 3x Cisplatlin, 5fu pump, and Doxetaxel. Modified neck dissection,20 Nodes removed, all clear 02-21-07. HPV+,33 IMRT start 3-22-07 70GY,Completed 05-04-07 | | |
#66102 12-23-2007 03:24 PM | Joined: Jan 2007 Posts: 735 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2007 Posts: 735 | Makes my holiday to read that Minnie !!! I hope you and your family have a very MEERY CHRISTMAS AND A HAPPY AND HEALTHY NEW YEAR !!
SHAR
Sharlee
35 year old Female Non smoker, very occasional alcohol ..Scc T1N0M0,partial glossectomy and left neck disection ,2/9/07 No rad deemed ness. 4/16 tonsillectomy ..Trimengenial Neuralga due to surgery
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#66103 12-23-2007 04:15 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 | Best news I read on here.. Have a great and Happy Christmas.
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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