#47092 08-22-2006 07:27 PM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) |  Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | Linda,
yes 66 Gy is the low dose (but pretty standard). They can go as high as 81 Gy.
Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
| | |
#47093 08-23-2006 03:32 PM | Joined: Jul 2006 Posts: 109 Gold Member (100+ posts) | | OP Gold Member (100+ posts)
Joined: Jul 2006 Posts: 109 | Today is Wednesday...I HAVE NO TASTE!!! One day it is going the next day it is gone. I cried through lunch and i cried through dinner  I totally hate it. This is why people stop eating huh? Why eat if you cant taste! So is this when I need to start drinking Smoothie King(The Big Hulk)it is a nutrition smoothie with weight gain in it? Im so depressed, the things we take for granted! I dont know why i thought i would be different, I guess that was just hopeful thinking. 8 days down, and 22 more to go...without food!!! Someone out there please tell me what to eat ( i do mean eat, not drink) I want to crunch and chew!!! THIS IS ONLY TEMPORARY, THIS IS ONLY TEMPORARY, THIS IS ONLY TEMPORARY...  | | |
#47094 08-23-2006 03:50 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 | Linda, AngelHair pasta and your favorite sauce [which you won't taste] will slide down easily.
Chicken thighs are much more tender and moist than breast meat, all kinds of beans and bean soup with ham will have some crunch-but if you can't taste them or they taste bad, you are not going to want to make the effort. Your big challange is to count calories [and liquids] and make sure you are getting what you need each day. And you are right, it is temporary for most folks.
This is the tough phase so stay strong. 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
:
| | |
#47095 08-24-2006 08:57 AM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Apr 2004 Posts: 837 | Linda,
I didn't have a tube at any point in my treatment, and ended up having to live on liquid/mushy meals for MANY weeks. Most of the time I couldn't chew solid food, even if it was very soft, so I resorted to the following: Carnation Instant Breakfast, broths of different flavors, pudding, ice cream, yogurt, fruit concoctions whipped up in the blender (but not acidic ones), baby food -- you get the idea. Yes, it all tasted terrible, but at this point you can't let your menu be dictated by your taste buds. Food is what you need for survival and whether you're eating by mouth or by tube, you have to get your daily intake to a healthy level and maintain it consistently.
Cathy
Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
| | |
#47096 08-24-2006 09:41 AM | Joined: Sep 2002 Posts: 642 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2002 Posts: 642 | Linda,
We are called "patients" for a reason...it takes a lot of patience. I could eat no food for months, soft food and soups only for even longer, and eventually, to my surprise, things improved. Now I can eat just about anything that is not too spicy and I can really taste most foods, including Mexican food, steaks, pizza, etc.
I am about as impatient a person as you will ever meet (ask my wife about my driving in Houston traffic!) but when it came to cancer treatment and healing, I was very patient...I guess because I had no choice. If I saw a plate of chocolate chip cookies, but knew that I could not eat them, they did not even appeal to me..I did not even want them. I am still that way about certain things that are just too much trouble to eat...like a candy bar. But there are so many other things that I can eat and enjoy.
So Linda, it is early in your journey and you soumnd like you are doing fine...but you have a way to go..so enjoy the adventure as best you can and you will be fine.
Take care..
Danny G.
Stage IV Base of Tongue SCC
Diagnosed July 1, 2002, chemo and radiation treatments completed beginning of Sept/02.
| | |
#47097 08-24-2006 05:09 PM | Joined: Jul 2006 Posts: 109 Gold Member (100+ posts) | | OP Gold Member (100+ posts)
Joined: Jul 2006 Posts: 109 | Thanks to all of you for letting me whine and ya'll listening, Im really sorry about it, and i wont continue the pitty party! I will get use to this, i just have to give it a few days. I weighed in today and i have lost another 2 pounds since Monday, so i have to stop whining and do something about this...I can do this! I just hit a big ass bump in the road, but i got over it!!!  Ok tomarrow i am going to wake up, and its going to be a new beautiful day, and im going to be OK! Did i mention that i have only...21 more days or 4 weeks and 1 day. YIPEE, its going by pretty fast, which is good. My sister is coming in this Saturday from Pinetop,AZ. to stay a week with me, she will be a big help, but most of all great company! Well, its time to say Goodnight to all of you wonderful people, and thanks so much for all the support. Ya'll make it so much easier for us new ones, you dont realize how important ya'll really are. Thanks Amy, Cathy and Danny for just being there.... | | |
#47098 08-24-2006 05:15 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 | Linda, give your sister a list "a mile long" of things to do- she will love "doing" for you. Enjoy her being there. 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
:
| | |
#47099 08-25-2006 11:54 AM | Joined: Apr 2006 Posts: 35 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Apr 2006 Posts: 35 | Linda,
Today was the first time I have been on here for a while. I finished my radiation treatments (had a tumor in my left tonsil) about the end of May. When I read you last post, I had tears in my eyes. I remember how hard and discouraging it was to loose my sense of taste. I don't want to scare you but it will get tougher. The good news is that these people know what you are going through and they can help you to get through this.
I did not have a feeding tube and I lost 70 pounds. That was over 1/3 of my starting weight. If I had it to do over (I hope I never do) I would have asked for one. I only lost about ten pounds during the radiation. The rest came afterwards. That was when my mouth and troat got sore.
You will find that no food is satisfying for a while (KEEP IN MIND THIS IS TEMPORARY) but you must get nutrition. I tried to drink the protien shakes (vanilla Ensure worked for me) and any of the "cream of" soups.
Make sure you do not have a lot of pain. Insist that your doctor prescribe you enough pain medicine to keep you from hurting.
Now that I have given you all that, here is the good news. I already have my taste back. I am eating almost anything I want and I am gaining weight. The tumor is gone and I am well on my way to being at my "new" normal.
Keep you chin up. Trust the people here to understand what your going through and, when you are feeling down, DO NOT GIVE IN!!
God bless,
Max | | |
#47100 08-25-2006 01:55 PM | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | Hey Linda, I think I whined WAY more than you have so far when I went through rad and chemo. It isn't called whining when you're going through it, it's called VENTING. That's what I was told and I'm passing it on to you. Feel free to vent as much as you need to. We've all been there and we remember how yucky it was.
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"
| | |
#47101 08-26-2006 02:46 AM | Joined: Jul 2006 Posts: 109 Gold Member (100+ posts) | | OP Gold Member (100+ posts)
Joined: Jul 2006 Posts: 109 | YIPEE!!! I have completed my 2nd week, 4 more to go. Now that im over the "not eating thing" i only have a few minor side effects. My neck is a little red, not bad. My throat is still a little sore, not bad as i thought it would be. Does that get alot worse? My doctor told me it wouldnt be any worse than getting my tonsils out. The nausea thing comes and goes. My emotions are out of wack, i cry at the drop of a bucket, spit still thick, and i feel like i have something in the back of my throat? But as far as i can see...EVERYTHING IS DO-ABLE, right? And i will have to admit, time has gone by very fast, i cant believe iv done 2 wks. so far. I hope the rest goes by just as fast. I pick up my sister today from the airport, so i have something to look forward to and will enjoy her company for the next week. Thanks again, for all of your support, i couldnt do this without ya'll. I will keep you posted, everyone have a great weekend!!! | | |
| Forums23 Topics18,171 Posts196,937 Members13,107 | | Most Online458
Jan 16th, 2020 | | |
|
