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#61196 07-03-2007 12:14 PM
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Hi, my husband is in his 5th week of post treatment. He still has severe pain from the sides of his tongue and a sore throat. He has a feed tube and is not eating much because of the pain and the swallowing. The mucous is slowly easing up but he is still spitting up in the evenings. He is still taking 60 mg of morphine a day. Any suggestions appreciated.


Carol CG to Husband age 60 Stage IV SCC right tonsil T4AN2B tx rad x 35 chemo x 2 Currently after treatment no sign of cancer in throat. (all clear to date)
#61197 07-03-2007 12:47 PM
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I hear ya, mpmma- my husband is 8wks past rads and 3 past chemo. he is still in severe pain for his throat. The Dr. said it just takes time. He hardly eats anything by mouth. thank goodness for his tube.It is so frustrating for him and also for me. I just don't know what else to do. He is on roxicet which helps some and like you the muscus has subsided a bit. He says he feels like a semi-truck hit him. NO energy but they say it will come back!! Hang in there, 'cause what else can we do. LJ


CG to husband 53,39 rads. 3 rds cisplastin ended 6/2/07 Tonsils removed 1.10.07 11 of 20 nodes positive- lump removed on rt. side of neck 1/26/07 cancer of nasal pharnyx TXN2MX 2nd rd. of chemo- carbo/taxol on 6/11/07
#61198 07-03-2007 02:21 PM
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Hi Ladies-

It takes so much time. I didn't eat much until 12 weeks post. Thank God for my PEG. They will come around...with TIME. I think the recovery part was the hardest part. Odd, I know. The fatigue is tough, too. I could've napped all day if my family would've let me. smile Hang in there....it'll be better soon.


SCC-tongueT3N0M0- IMRT 35times-1/07-3/07; along with one cycle of Cisplat & one cycle of Carboplat; weekly erbitux.finished all tx.3/07-supposedly gone. Recurrence 6/07. Age 31-non-smoker/social drinker. Devastated it's back.
#61199 07-04-2007 04:37 AM
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Thanks Jordan, just when you think you are the only one. we hear from someone, 12 wks you say....WE just have to hang on. It seems everyday is a week. Somentimes it is hour to hour how he feels. Today is a crappy day for him. I was hoping for better. but... There is always tomorrow. LJ


CG to husband 53,39 rads. 3 rds cisplastin ended 6/2/07 Tonsils removed 1.10.07 11 of 20 nodes positive- lump removed on rt. side of neck 1/26/07 cancer of nasal pharnyx TXN2MX 2nd rd. of chemo- carbo/taxol on 6/11/07
#61200 07-04-2007 06:09 AM
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mom,

What he is experiencing is normal but he must continue to get his daily rations of water and food into his body.

I didn't have the tube and I can tell you, he doesn't want to short himself in the water and food department as it only makes a bad situation extreme. Oh, and it doesn't take long to get from bad to extreme either, 3, 4 days tops so please stay on top of his daily intake and don't take his word for it because, silly me, I lied to my wife more than once. Not only did I pay the price but I put my wife through living hell.


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.
#61201 07-04-2007 07:10 AM
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Marvin is just starting his 10 weeks out. Only in the past few days I have been able to notice little things. He doesnt seem to sleep as much, is drinking mostly water and diet coke by mouth. We still use the tube for main nutrition. I have started to add some protein powder to his tube feedings to get extra protein in him. He tries to eat small things but we are not to sucessfull. He maybe eats 1/4 of cup of things or less but at least it is a start. Hang in there things will get better. Marvin also delt with the thick mucus for a long time during and after treatments but it has finally gotten better. I told him I cant wait until he can eat more and we can go out to eat again. My goal is get him though this and then take a cruise next winter somewhere. Thats if he can eat good again and enjoy the food. He has always wanted to go on a cruise.


Barb
CG for Marvin.
#61202 07-04-2007 07:14 AM
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I too am having a hard time post Tx. I thought that once rad and chemo was over it would be smooth sailing. Boy, was I wrong. My wife, who is also my hero, kept telling me that it would be tough for awhile after Tx but I wouldnt listen. Well, she was right. I didnt think to read in this forum until today. I see that Im not the only one struggling to heal. I am able to eat by mouth and I thank God for that. The fatigue thing is what gets me the worse. I too could nap all day if my wife would let me but she wont. When she isnt here I have to literally force myself to get out of bed. I thank each of you for your posts because it showed me that I am right on track with the rest here. I do have 1 more surgery scheduled for the 25th of this month to remove the tumor on the left side of my neck and possibly a neck disection.


Dx Mar 07 with Base Of Tongue Stage IV. IMRT 35x with 3 doses Cysplatin ran concurrent. Tx ended May 31,07. Left and right node involved. Radical neck disection 7/18/07
#61203 07-04-2007 09:26 AM
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Hello everyone! My husband is 4 months out and STILL feels crappy some days. He too could sleep all day and has no energy. B12 shots help. He also has no appetite and has to force himself to eat. He gets upset stomachs alot. He has lost a total of 45 pounds and hasn't started to re gain any. We had no idea the recovery would be this hard and this slow. I hope it gets better soon.


Amy
CG to husband Bob, age 42. DX Dec. 1,2006, SCC base of tongue Stage IV spread to lymph nodes.Currently receiving Taxol and Carboplatin. Rad. Surgery for removal of lynph nodes scheduled for late March.
#61204 07-04-2007 09:49 AM
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Does the protein powder in the tube help??
My wifewas just suggesting that last night.


Dx Mar 07 with Base Of Tongue Stage IV. IMRT 35x with 3 doses Cysplatin ran concurrent. Tx ended May 31,07. Left and right node involved. Radical neck disection 7/18/07
#61205 07-04-2007 10:42 AM
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Amy,

I ate and ate and ate all the wrong fatty foods and I didn't start to gain weight back until my 8th month post. Then when I started to gain I suddenly had to start watching what I ate to aviod gaining to much. Now 10 months out, I'm back to my pre Tx exercise routune and I'm back to being totally health conscience about what I eat.


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.
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