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#21675 12-06-2006 08:37 PM
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I was diagnosed on August 14 with tongue cancer,
stage 3. I have completed one round of chemo and
have now started second round of chemo and radiation (I have had 11 treatments) for a total
of 35 treatments. I have had no problems with chemo but I need advise from all of you that have
gone through this before me. All food tasts like
either metal or cardboard. My mouth is getting so
sore to swallow that it is even becoming difficult to swallow my meds. I have a peg tube also. Sorry it has taken me so long to post but I have been reading from your site and many books
to try to stay ahead of this. Again, main concerns : FOODS TASTE BAD, SORES IN MOUTH AND SORE THROAT WHEN I SWALLOW (PAIN LEVEL 8) AND
FATIGUE IS COMING ON PRETTY GOOD. I have a positive attitude and am a young 62 years old. Me and God plan to beat this. Also, I have smoked for 40 years. Tried patches and am now
hearing about a pill that works better. HELP


BOT SCC Stage III DX August 14, 2006. Radiation and Chemo completed January, 2007. No surgery. "When you have exhausted all possibilities remember this-----You Haven't"
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Hi gaatagirl, quit smoking or nothing else matters. It was the hardest thing I had to do so I understand.There is no easy way to get through treatment and There are a lot of people at this site that are going thru radiation right now that can give you great advice on ways to handle pain and eating issues. Keep up with the positive attitude and hopefully your side issues will improve. Good Luck,
Mark D.


Mark D. Stage 3 Nasopharynx dx10/99 T2N3M0 40xrad 2x Cisplatin 5FU. acute leuk 1998.
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First, know that YOU CAN DO THIS! If you've been reading this forum, you know there are many of us who have been through this and come out the other side. Yes, food tastes bad and will for awhile, but that gets better in time. The mucositis (sores in the mouth) are EXTREMELY painful, but temporary. The pain can be controlled with lidocaine, liquid vicodin and even fentanyl patches if necessary. Your RO and MO should be monitoring you closely and providing pain meds as well as mouthrinses/washes (like Miracle Mouthwash) that will help. Fatigue is normal right now. Radiation and chemo take a huge toll on your body. It was all I could do just to get to treatments everyday. The rest of the time I was either in bed or crashed on the couch. It got so bad toward the end of treatments, I had to be driven to the MO for daily IV hydration for two weeks. I did not have a tube and couldn't swallow and was nauseous. (By way of comparison, yesterday I was eating taquitos. It does get better, much better.)

Looking back now, I remember how bad it was, but it still seems like a blip on the screen now that the worst is over. Each days treatment is one closer to the last one. Stay in touch, keep reading and posting. smile


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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Gaatagirl,

YOu and God can make it through this, but you have to do your part. That means quitting with the cigarettes. I smoked for a long time too. I put them down on June 19th. It was/is very tough, but I knew it was for the greater good.

As far as your treatment goes; trust your Drs and keep them informed. I still have some pain medication every now and then and I'm 2 months past treatment. During treatment I struggled too. I used my PEG and it helped a great deal. I also used lots pf drugs for nausea and pain.

I'm slowly getting better and you will too.

Tim


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.
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I'm not sure I understand how many rad treatments you have had and how many more you will get?


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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The first and foremost thing to do now is to quit smoking for good, as all others have suggested here. Most of us have gone through all the side effects of treatment you are experiencing now and if we can overcome them eventually, I believe you won't be an exception. The process is painful and you need very positive attitude and strong will power to cope with it. I also came to a point that my mouth was so sore that I couldn't take any pills orally. My doctor prescribed the pain killers in syrup form and a kind of liquid medicine that helped me numb my mouth before taking my meals. As for the nasty taste buds, you need to be patient and keep on reminding yourself that you need to eat for life now and it is too luxurious to think of enjoying the food at this moment. Hang in there and the light at the other end of the tunnel will soon appear.

Karen


Karen stage 4B (T3N3M0)tonsil cancer diagnosed in 9/2001.Concurrent chemo-radiation treatment ( XRT x 48 /Cisplatin x 4) ended in 12/01. Have been in remission ever since.
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gaattagirl;
I was told the metal taste of the food was due to the chemo (Cisplatin) in my case, but the radiation soon remedied that as nothing had any taste at all. The food intake will continue to slow as the mouth sores and pain continue to ramp up. Use the medications and if you're not getting what you need ask your doctors for them. Karen is correct about the patches and liquid pain meds. I found the patches (fentanyl) to be very accomodating.

Since you have a PEG tube, use it. Use it often and maintain your energy and weight as well as you can for as long as you can. I know that is easier said than done, but I believe the better your focus is on these few things the more it will help your recovery time. I fought using the tube until it finally became my allie. (finished my rad/chemo 6 weeks ago and 2 weeks prior to 2 weeks after treatment I couldn't hardly get a small swallow of water down my throat)
Even when you finish treatments the after effects you've read so many on this site speak of continues, and when you are eating again it's still tough to get enough nourishment, so train yourself to use the tube! Lastly, I don't want to preach but do away with the cigarettes however you have to. You are in a fight for your life and they can't be helping at this point. Try that pill you speak of if it will help.

As you stated, you have God on your side, and you have a positive attitude. Some of these side effects are a small, (hopefully most being temporary) price to pay for your life. Hang in there, it does get better.

Steve


SCC right side BOT/FOM; DX 1-25-06; Neck dissection/25% of tongue removed 2-17-06. Stage 2 Recurrence 7-06: IMRTX35 & 3X Cisplatin ended 10-18-06. Tumor found 03/18/13; Partial Glossectomy 03/28/13 left lateral tongue. Nov. 2014; headaches,lump on left side of throat. Radical Neck Dissection 12-17-14; Tumor into nerves/jugular; Surgery successful, IMRTX30 & 7X Erbotux. Scan 06-03-15; NED! 06-02-16; Mets to left Humerus bone and lesion on lungs-here We go again! Never, Ever Give Up!

**** PASSED AWAY 10/8/16 ****

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gaattagirl, Hi just read your post. I wanted to relay some info. For me quitting smoking was not that bad. The thing that worked for me was the netting they use to clamp your head down to the table for rad treatment. It was about 200 degrees and it was like a sledge hammer to my reality! The pain of the heat was gone in about 10 seconds but I remember it like it just happened. I am a 30+ year smoker and I had just taken up a new hobby- cigar smoking! It is all gone now, I haven't inhaled any smoke since that moment. Surgery didn't stop me, cancer didn't stop me but that damn netting worked!!! I guess I'm saying you have to pick a moment in time and it has to be important enough for you to say enough is enough. I didn't have chemo (I may, don't know) but I am smoke free! Good Luck!! Tony


45yrs young SCC - TVC - 28 rad trx- future? finished on nov 28,2006

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