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#59053 10-17-2006 07:59 AM
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Linda,
My Drs said the hair on the back of my head will come back. He did say it may not be the same as it was, probably finer/thinner. My wife says I have some hair back there no, but it is baby fine type hair.

I'm not quite 2 weeks out; I've been eating by mouth a little more and more each day. I started with oats and soup. Yesterday I had some egg noodles with cheese sauce. I still have pain/discomfort in my throat; I pray that goes away soon. I haven't gained any weight back, but I'm drinking the Carnation VHC shakes too. I hope that helps gain weight. I lost 14 lbs since I started and want to gain most of that back.

I think the Drs here in TX will release me next week to travel back to my home in GA. I have my PEG tube scheduled to come out next Wed. What do you think? I'm a little nervous about getting it out even though I don't use it much any more. I still don't have any taste, do you have any taste?


Tim Stoj
60 yr old. Dx Jun 06 with BOT Stage IV. Neck dissesction on 19 Jun 06. Started Tx on 21 Aug 06/completed 33 IMRTs and 3 CT (2 Cisplat & 1 Carboplat) on 5 Oct 06.
#59054 10-17-2006 11:47 AM
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LInda and Tim, My wife says the hair on the back of my neck has started to come back but I can't feel anything. I don't care because I can't see back there anyway & I used to try to shave the back of my neck in between haircuts and I always worried I would cut myself and bleed all over my shirt without realizing it.


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.
#59055 10-17-2006 12:41 PM
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Hi Linda,
My husband finished treatment at the end of May, it took maybe 2 months for the hair at the back of his head to grow back, it is finer, very soft!!
Getting the taste back is very slow going, it has been almost 5 months for him, and he just gets hints of taste. He eats everything just for the calories, really has no appetite. He started eating "solid" foods about 3 weeks after radiation.
Congratulation on finishing treatment!!


Cindy,cg to Chuck,SCC unknown primary,modified neck dissection 3/06,IMRT x33 started 4/12/06,finished 5/26/06
#59056 10-17-2006 04:02 PM
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I thought I would share something that helped me with the thick spit. The doctor prescribed lidocaine and I added that to a solution of baking soda, salt, and water. I can't remember the measurements now but it helped to keep my mouth clean and helped with pain (for a few minutes) and to heal those sores. I always carried my mason jar of that around. It was my best friend along with the h2o.


Dx June 2004 stage III right tonsil 1 node involved, 70 radiation tx completed 08/20/04, no chemo or surgery, 32 years old and 26 weeks pregnant at dx and tx. & non-smoker and non-drinker
#59057 10-18-2006 03:47 AM
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Oh thank goodness, i will get my hair back ( thinner but back ) i really hate to sound so excited about that, but being a woman, its just a little harder to deal with...YIPEE!!! laugh And Tim you are doing sooooo great, stop pushing yourself, i think you are more advanced than you think, im proud of you, and i know you want to get home a.s.a.p. but i will have to say, Texas will miss you and your family! As far as my taste, im to scared to see if i have it back, when i try to eat, the texture or something just doesnt feel right? Or as i have been saying...its all mental, i dont know? And i have this damn thrush too, so that is not helping me at all. But this week, im going to try to eat, and will let you know if i have taste or not. I know my nose works just fine, haha! I use my tube always, so i would panick to have to get it out right now soon, they told me, 5 weeks and they would take it out. I lost 29lbs though, so they want me to eat and push through the tube. Thanks for the congrats too, Cindy, boy am i glad that is over with!!! And Mary, thanks for the "thick spit" advise!!! That can be a BIG pain in the butt, over coming that part!!! Tim, keep going strong and you will be home before you know it, your doing fantastic!!! laugh

#59058 10-18-2006 04:11 AM
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I have seen references several times to choosing between the tube and eating normally. My hubby had a PEG tube but could eat orally while it was still in. That helped to bridge him from eating no solids to eating regularly. At first, there was no way he could bring in enough calories with an oral diet. He would eat some oatmeal or soup and supplement his calories with the PEG tube. That way he could keep trying new foods but not worry if he couldn't finish them or they hurt his mouth. I would just throw it out and try something else.

#59059 10-18-2006 05:20 AM
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anemone70/

How long did your husband have his tube for?

Linda,

I think you are doing great too. Thanks for all you kind words of encouragement. Tomorrow will be day 14 post treatment. The biggest thing I'm dealing with now/today is fear/depression for the future. I have a wife and 6 yr old son and my dx has really thrown me for a mental loop. I lay a wake at night worried about thier/our future.


Tim Stoj
60 yr old. Dx Jun 06 with BOT Stage IV. Neck dissesction on 19 Jun 06. Started Tx on 21 Aug 06/completed 33 IMRTs and 3 CT (2 Cisplat & 1 Carboplat) on 5 Oct 06.
#59060 10-18-2006 05:40 AM
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Cindywi, your husband's treatment parallels mine, almost down to the day. Like him, I eat only for calories as my taste is still extemely distorted/disminished.

The hair on the back of my head grew back after about 3 months. It is somewhat thinner and finer and slower growing than before, but it fills in just fine.

linda, I understand the food phobia-mine went on for nearly 4 months while I lived on Ensure and Naturade weight gain and Prosure, probably less than 2000 total calories every day. Weight loss is 30 lbs (without a PEG). I'm now back to eating and off the Ensure (for the most part), but I haven't put on any weight yet. My energy level has improved significantly, though, with food.


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.
#59061 10-18-2006 11:19 AM
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RileyMc, I am on Carnation VHC (560 cals) to gain weight, which I am doing nicely but I am still a weak puppy. I am active all am but lie in the bed and watch tv the rest of the day. I can eat anything I want (without great taste)but I still choose the liquids for weight gain and convenience. Are you saying that your energy improved soley because you went to solid foods?


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.
#59062 10-18-2006 12:38 PM
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David, my energy level improved SUBSTANTIALLY after I began eating regular food (mostly chicken,beef & pork no bread, potatoes, rice or other starchy stuff.) Now, it could have been a direct result of the food intake, or it could be that I was far enough out from treatment that my body was recovering anyway.

I also began to respond to treatment for post tx depression, so that could have been a factor also. In any event, things are much more 'normal' after I returned to eating and quit depending on the liquids.


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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