#14986 03-19-2004 09:27 AM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) |  Patient Advocate (1000+ posts)
Joined: Mar 2003 Posts: 1,384 Likes: 1 | Sheldon, Thank you for the update!
What you found out makes this forum all worth while.
You are heading into a procedure that is not the most fun, but it works quite well. Before you start get to your dentist and have her/him give you the works. Fight for your teeth (I still have all of mine). If you are able to get IMRT you will have less trouble with low salivia. Take advantage of anything they can do to save some salivia. Please stay in touch as this moves forward.
Take care
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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#14987 03-19-2004 09:43 AM | Joined: Feb 2004 Posts: 162 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Feb 2004 Posts: 162 | Sheldon,
Before you start radiation, make a point now to visit all your favorite restaraunts and eat all of your favorite foods, if you're able. Some may disagree with me (I don't know), but I think it's a good idea to go ahead a allow yourself to gain a little weight if possible, provided you're happy with the weight you are now. When you get towards the end of your radiation treatment, you'll be thanking yourself. Before I started I bulked up by 15 pounds and scarfed up all of my favorite foods. Before the end of my second week of treatment I lost my sense of taste completely. I never had the feeding tube, but the loss of my sense of taste robbed me of my appetite and eating became a chore rather than the pleasure is should be. By the time I finished treatment, I had lost all of the weight I allowed myself to gain plus a little more, but pretty much broke even. The really good news is that your sense of taste comes back. Maybe not 100%, but after living with no flavor any flavor is a joy. I'm about 4 months post-treatment and I would say I have at least 70% back. Good luck and keep educating yourself -- knowledge is power!
-Brett
Base of Tongue SCC. Stage IV, T1N2bM0. Diagnosed 25 July 2003.
Treated with 6 weeks induction chemo -- Taxol & Carboplatin once a week followed with 30 fractions IMRT, 10 fields per fraction over 6 more weeks. Recurrence October 2005.
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#14988 03-19-2004 06:28 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 | I seriously second Brett's suggestion. I had the surgery first, then healing time before rad. Because I knew for sure I would have rad/chemo, even before the surgery I started to eat like there was no tomorrow - all the things I had previously avoided, e.g. desserts. I gained more than 40 lbs., and even though I had a PEG, lost that and 20 more, which I have just, 18 mos. out, put back on. So unless you already have a good cushion, you can help yourself by adding some weight now, when food tastes good. And Brett, my sense of taste is now exactly as before all this, but it took about a year to be able to eat anything with vinegar or any other spicy flavor without burning. You will get there.
Joanna | | |
#14989 03-20-2004 06:51 AM | Joined: Oct 2002 Posts: 546 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2002 Posts: 546 | Sheldon, I'm so glad you found this forum when you did and went for the second opinion. I agree with Brett and Joanna. Heather also was told to bulk up before radiation and she, too, lost more than 60 lbs. (Of course, some of her loss was due to the PEG tube not working properly, but that's another story.) I do remember the radiation oncology nurse telling her to not worry about having an extra piece of cake......just eat the whole cake!! I wish you a speedy recovery. Rainbows & hugs,  Rosie
Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.
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