#20502 05-29-2006 04:27 AM | Joined: May 2006 Posts: 2 Member | OP  Member
Joined: May 2006 Posts: 2 | Good Morning. Only ran across this site this morning....read a bit and registered. Diagnosed with cancer of the tongue (squamous cell) July 2004. Had radical neck dissection followed by chemo (three sessions of Cisplatin and 5FU) and finally my thirty five radiation treatments interspersed with three sessions of chemo (Cisplatin). Finished treatment (Oct 29.....don't think I'll ever forget that date). Recovery was slow but positive (I think I was looking for something faster). However, I sit here this morning drinking my coffee being so very thankful to my God, my doctors and friends and family. Niether my taste or saliva are what they were precancer but they are okay and at this point I think they are as good as they're gonna get. I feel thankful and blessed. If anyone has any questions, please ask. I'm not a vast resource of knowledge but I do know of my experiences. Happy Memorial Day, everyone and God Bless. John | | |
#20503 05-29-2006 05:36 AM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | Welcome to the site John, the more experienced posters the better. I will celebrate my third year anniversary on July 10th and hope to see many more. Like you, I am grateful. Hope to hear more from you.
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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#20504 05-29-2006 09:10 AM | Joined: May 2006 Posts: 69 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: May 2006 Posts: 69 | Hi John,
Thats great to hear, gives me hope,..
all the best!
H
the world brought me to my knees...
Update: Feb 10/08: Mom passed away on Jan 31,08 - infection (unknown) in her lungs with her weakened immune system resulted in cardiac arrest - T2NO SCC of tongue surgery 6/30/06, SCC left neck and lungs detected Sept 07, 7 weeks rad/3 rounds chemo had no effect.
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#20505 05-29-2006 01:20 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,676 | John, thank you for joining us and what a nice message.  Amy
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
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#20506 05-29-2006 03:56 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 | Hi John,
Welcome. It's always great to add another survivor to our ranks.
Congratulations as you approach your 2 year mark.
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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#20507 06-01-2006 10:37 AM | Joined: Mar 2006 Posts: 90 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Mar 2006 Posts: 90 | John,
My father just finished treatment in May so glad to hear about survivors and that it will get better. I am beginning as I know he is if he will ever eat solid food. How long before any taste came back to you and how did it begin? I think if my Dad could taste something it might also help his ability to eat.
Tx
Kim
Caregiver to Father:Stage III unknown primary; modified left side neck dissection 2/2006; 8 wk trmts of Erbitux 3/2006 with-37 radition treatments; 11.2010; biopsy of base of tongue results questionable. 9.2013 tumor on left side of tongue; squamous cell cancer. 10.2.2013 Hemiglossectomy(1/2 tongue removed) with reconstruct tongue using left thigh tissue;surgery included IORT.
25 additional IMRT radiation trtmts & 5 wks/chemo. Carbo & Taxol combo.NPO;100% PEG depend;aspiration pneumonia 3/2014
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#20508 06-01-2006 07:23 PM | Joined: Mar 2002 Posts: 1,140 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2002 Posts: 1,140 Likes: 1 | Welcome, John. Another survivor is always welcome, as it gives hope to those in treatment.
Kim, it was probably 4 to 5 weeks before I began to regain taste, and it did not come back all at once. First salt, last sweet. I ate a lot of chicken noodle soup because I could taste it. I remember eating a piece of apple pie, tasting one bite that was so delicious, then the next bite tasted like cardboard. Avoid salad dressings because vinegar is like fire. It is a gradual process, but try your dad on salty things in a couple of weeks. Recovery can be a slow process, and will teach you the meaning of patience like nothing else. Hang in there. | | |
#20509 06-04-2006 03:02 PM | Joined: May 2006 Posts: 2 Member | | OP Member
Joined: May 2006 Posts: 2 | Hi Kim,
Hope your Dad is doing well.
After finishing treatment it was a couple months before did any eating to speak of....I just stuck with my Ensure. I know the first things that tasted good to me were milk and eggs (scrambled) and then came ground beef. Peaches were pretty good and applesauce was absolutely horrible.....very metalic. It was just a matter of trying things. If something is bad, check it again in a week or two. The change is slow but things do change. And I think it is different for everyone...so keep testing little bits. One bite will lead to two. Hang in there and God Bless. John | | |
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