#11693 08-25-2007 09:54 AM | Joined: Jun 2007 Posts: 510 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Jun 2007 Posts: 510 | Minnie: Thinking of you, and praying that God will give you the strength and patience you'll need until you get your report. Just know that all of us love you and care for you and your family........
CG to 77 y/o hubby;SCC Alveolar Ridge; Wake Forest Baptist Hosp surgery: 07/19/07; bi mod radical resection/jaw replacement; T2 N2-B M0 Stage IV-A 28 IMRT + 6 Paclitaxel/Carboplatin Getting stronger every day!
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#11694 08-25-2007 10:35 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Sep 2003 Posts: 1,244 | Minnie Gary say we are not all insane at the same time :rolleyes: Well you and me are going to be good company for each other in the asylum I wasn't going to post this but having read your post and not wishing to steal your thread, I suppose you are the best one to share this with. My 'area of concern' is an ulcer ( not immediately visible to me) on the scar tissue at the back of my tongue and the margin of the graft. It has been painful for a few weeks, so took my self to my dentist yesterday. He performed his tricks with the mirrors and found the ulcer.. Unfortunately he also found an enlarged lymph node in my neck. This weekend is a holiday weekend, so the earliest I can phone the hospital is Tuesday. Oh and the next head and neck clinic will be a week on Monday the 3rd of Sept. So for the next 7 days can I climb the same wall as you. Will light candles and say a quiet prayer for you. Sorry to have hogged your thread. ( will mail you anyway) 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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#11695 08-25-2007 12:00 PM | Joined: Jan 2004 Posts: 316 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jan 2004 Posts: 316 | Minnie,
I hope it will be good news on Tuesday, my love and best wishes.
Oh Helen, I'm very sorry to hear that. Good luck on Tuesday as well, love and hugs.
Tizz
End of Radiation - the "Ides of March" 2004 :-)
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#11696 08-25-2007 04:26 PM | Joined: Mar 2006 Posts: 114 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Mar 2006 Posts: 114 | Hang in there Minnie! You are in my prayers.
-Steve J
Age 41 - Stage 2 SCC tongue Dx 2/06. Cisplatin x3, IMRT x35. Mets to neck node discovered 7/07. RND 40 nodes removed, margins not clear. Cisplatin, Taxotere, 5-FU Fall 07, then IMXT/Erbitux for 7 wks. Inoperable mets to both lungs and pleura Dx Oct'08. 4 cycles Carboplatin, Erbitux, 5-FU so far.
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#11697 08-26-2007 11:01 AM | Joined: Jun 2007 Posts: 718 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jun 2007 Posts: 718 | Wow, Minnie and Helen...so sorry to read about the stress of your current situations.
Praying for really good news for each of you on Tuesday! Margaret ---------- 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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#11698 08-26-2007 03:43 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 and Helen, you will both be in my thoughts an prayers.
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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#11699 08-26-2007 04:17 PM | Joined: Apr 2002 Posts: 52 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Apr 2002 Posts: 52 | Hi Minnie, So sorry to read what you've been going through. The best thing about OCF is that we know we're not alone as others have felt that same fear, lost our composure big time, par for the course so don't feel bad because your normal.
I've had the same problem, among others, this past year so hope I can help you a bit here. When I had cancer 5 yrs ago I was on a liquid diet 4 years but finally found one spot on dentures that I could chew pretzels and swallow as long as I uesed yogurt for a dip. Well, let me tell you I was a very happy camper as long as I could have that crunchy food to look forward to. So I chewed a lot of pretzels even though it was hurting more every night as I took my dentures out for the night. Finally I couldn't take the pain anymore went to dentist for adjustment. He was very upset when he saw this large white patch on roof of mouth,and insisted I get biopsy. Before I could get it looked at I had that bleeding episode in May.
I'm pretty much over that and have apt. 9/4 for biopsy though oral surgeon doesn't think it's anything and I'm pretty sure he's right as it has shrunk a lot since I've been off pretzels 3 months now.
What I want to tell you Minnie is that we don't have to get skinny because we can't eat regular food. I'm back on liquid food, mostly Nutren 1.5 complete high calorie liquid nutrition. Yes it tastes terrible, add chocolate, strawberry boost and pour over ice. I remember after my radiation 5 years ago when food was out of the question the only thing that kept me alive was chocolate Ensure poured over ice was the secret. Like you I looked like death warmed over till I realized I could die, Anorexic, if I didn't get serious putting nutrition in my body. Trust me it's very hard to get that weight back on.
So Minnie get yourself some Boost, ice cream, anything to get some nutrition. We can't fight without some real nutrition in our body. There is nothing we can chew with this much food value.
I hope your test comes back nagative and from now on you go easy on the chewing. I know I gave up pretzels PDQ when I saw the look on my dentist face.
Good luck and best wishes to you all as we hold out breath for Minnie this week.
Marlene
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#11700 08-26-2007 05:10 PM | Joined: May 2006 Posts: 137 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: May 2006 Posts: 137 | [quote]I do not wear my upper denture, so when I eat, I use a tongue thrusting motion that causes the contact between the underneath of my tongue and my bottom teeth. This has created quite an open area under my tongue that just won't heal. It trys to and at times seems like it is, but then I get really hungry again, eat alot, and we're back at square one. [/quote]What does your dentist/oral surgeon have to say about this?
dx 2/13/06. modified radical neck dissection 3/9/06 multiple biopsies of upper airway and direct laryngoscopy. 1 of 47 lymph nodes positive for metastatic undifferentiated carcinoma (lymphoepithelioma). Unknown primary. Finished radiation 5/24/06.
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#11701 08-26-2007 06:10 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: Aug 2003 Posts: 1,627 | McRiley, my dentist, who is a specialty cancer dentist, told me two months ago that he was not concerned that this was cancer. He said he could see where it was rubbing on my implants. He shaved my implants a bit yet the area didn't heal. So, now the biopsy. I will say that day 5 after the biopsy it looks better. The edges have healed, the color is the same color as the rest of my tongue and it doesn't hurt. We shall see on Tuesday. I just can't shake a bad feeling about this, which isn't like me.
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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#11702 08-26-2007 06:15 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: Aug 2003 Posts: 1,627 | Marliz, You are so right about the nutrition. My husband has become my warden and I think I gained at least two pounds over the weekend, lol. He's such a good man, for his sake more than mine I pray that my biopsy is negative. He just landed the biggest contract of his career...........it will put us in a place financially that we've never been before and never dreamed of being. For me to get sick again right now would certainly mess that up for us.
Thanks for the advice and the kind thoughts. 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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