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Finally coming out of the closet. I've been pretty titght lipped not wanting to discuss whats going on with me-but am finally accepting my scituation and trying to move forward.
I've followed this forum more than any other and found it to very inspiring,informational and supported.
So diagnosed with stage 3 tongue caner with one spot on lymph node.Just comepleted 3rd radiaition treatment and my first chemo session is tomorrow.
Been on rollercoster of emotions with anxiety at the top of the list.
Next step which is constantly being suggested strongly to me is feeding tube.As of rite now and of course only 3 radiations,my appetite has not been effected although my gland is extemely painfull lately.
Thank you folk for being here and there's definatley comfort in knowing i am not alone and hearing from real life scituations.-Paul B

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Welcome to OCF, Paul! You have found the very best place for medical info and support to help you get thru your battle. We value our members privacy. Our site makes it possible to remain completely anonymous. What you divulge of your own personal information is up to you.

If you have been reading posts then you know how I nag everyone about their intake. This is the most important thing within your control to focus on. Every single day you need a minimum of 2500 calories and 48-64 oz of water. At this point that probably sounds like alot but also easy to accomplish. Radiation is cumulative and treatments will gradually make you feel worse as time goes on. By not skimping, you will help yourself to get thru this.

One of the very best things about our group is knowing there are others out there who have been thru this. We all understand where you are coming from and what you are going thru. When hearing the word "you have cancer", many patients instantly become anxious. Who wouldnt? That event has forced you to face your own mortality and fear for the unknown future. Many patients (and quite a few caregivers too) take anxiety meds to help them get thru it. Others seek out therapists who work with cancer patients. We are here for you and its ok to lean on us.

Best wishes with everything!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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Posts: 1,024
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Hi Paul. Welcome, though it always saddens me that others have need of this group. That being said, this is the place for support and advice. I could not have got through myself without the help of those on this forum.
Christine has given you great advice on oral intake.
My husband Kris had to have the feeding tube, the PEG, inserted before his team would start radiation/chemo. It was a life saver.
Please come here with any queries or concerns as you progress through. We are here to help you. Nothing is a stupid question. Many have walked this path before you and we are very willing to share and help.
I hope you have a great support person with you and that you are not doing this alone.
Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
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Hi Paul,
My doctor also took the decision off the table. He told me all his patients had PEGS during treatment. Maybe he just thought I looked like I was going to need it. I did need it. I quit eating early on during treatment and the last two weeks stopped drinking which was a really bad thing to do. It was hard to start swallowing again but I did it. I think the tube was a lifesaver and it kept me out of the hospital. Best wishes.


Karen
Nurse/49 year old non-smoker/rare casual drinker
2008 Papillary Thyroid Ca with RAI and Thyroidectomy
9/2015 L Pyriform Sinus SCC HPV+ mets to two lymph nodes
T3, N2b, M0 = Stage IVa
10/14/15 Tonsillectomy and Panendoscopy
10/27/15 RADS 37 tx and weekly Cisplatin Chemo
03/15/16 3 month PET scan scheduled
Joined: Nov 2015
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Hi Paul,
My husband has just started treatment this week as well...thank goodness! Stay strong. 3 radiation treatments in and 1 chemo, 27 more radiation and 5 more chemo...
Take it all one day at a time, one hour, and one minute. You will get through this.
This forum is AMAZING! Christine has helped me get through some extremely difficult times over the past several months. Come here often.
You're in my thoughts and prayers, as is everyone on this forum!


Wife of a stubborn survivor
Scared of the unknown
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Thanks for everyone's kind words and support. Having PEG tube inserted next Wed and pretty sure Its the way to go I'll have had 9 rads and 2 chemos at that point so pretty sure I'll be ready for it(Hope I didn,t put it off longer than I should have. Mouth pretty dry at this point after 5 rads and my first chemo Tues-other than that nothing unexpected. Mild naussia from the chemo but nothing too bad.
Of course I'm up at 1am sipping coffee figuring it's an enjoyment I'll be losing soon and still sneaking a few cigs-HAS GOT TO STOP!

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Hi Paul,

The individuals on this forum have been a great source of information for me as well. Even though it was recommended by several people in this group, I did not get a feeding tube. The hospital I was at said they preferred me to not have it and continue taking calories orally. As of tomorrow I am 2 weeks outside my radiation treatments, I did not need chemo. I have been drinking high calorie drinks and high protein drinks. I have lost weight but I wanted to lose some of it. For me it was at about three weeks in before food started to lose its taste. Once I started with the changes in my saliva and what I call the worst part of the side effects that is when I stopped with solid food. As of now, I am feeling stronger and less fatigued each day. I am hopeful once the mucous in my mouth subsides I am looking forward to eating food.

One item I think is important and from reading different post in this forum, you should be doing exercises for your mouth, tongue and swallowing. If you can continue to swallow you should be doing that as well. I was told by several people the muscles in your throat can lose their memory of how they swallow. I have been told it is important to continue swallowing if you can.

Whatever concerns or questions you have their are some great people in this forum who really care, provide support and advise. In a few weeks and before you know it you will be counting down the last few days of treatments. Keep in mind and you have probably been told this, the first two weeks after treatments end you will still feel like you are receiving them. In my case I felt worse after I was done. Just this week I am beginning to feel better. I am hopeful I will continue to heal and return to a somewhat normal life and activities in the next couple of months.


Leonard
BOT T2N0 Diagnose Confirmed December 7th
Treatment Start Radiation January 11th Last treatment applied February 19th 2016
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Another side effect that seems to vary-the regeneration og you taste buds.
Probably the biggest thing driving the Tube being installed! Understanding the significance of ceeoinf the calorie intake high when do taste buds start responding-what play the biggest factors in a speeedy recovery rate?

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Its not only the taste buds being affected by radiation treatments that getting a feeding tube. OC patients experience varying degrees of dysphagia (problems with eating and swallowing) as a side effect from the radiation treatments. Usually after the second or third week the patients throat begins to get sore and they notice changes beginning in their sense of taste. Both happen gradually and become worse as rads continue. The best thing you can do is to keep your focus on your intake and keep swallowing even if it is uncomfortable and its only tiny sips of water. The swallowing muscles when not used daily quickly forget how to function.


Dysphagia info (from main OCF pages)

Treatment Info (main OCF pages)

Im not exactly sure of what you are asking with... Understanding the significance of ceeoinf the calorie intake high when do taste buds start responding-what play the biggest factors in a speeedy recovery rate?


PS... Please look for the tiny flashing envelope near the middle of the menu towards the top of the page. Click on it to get your messages and review the enclosed link. It will quickly teach you the ins and outs of the forum and how to make and add your signature. Thanks!

PLEASE!!!!! Get rid of the tobacco! Im sure you know how dangerous this is to your long term survival. I am a former smoker and know its not easy to quit. One day prior to starting treatment the light bulb finally went on for me as I reached for a cigarette. I realized I had done this to myself and now face dying and leaving my children without a mother all for my "habit". That was the exact moment I said I would never smoke again and I have not touched any cigarettes since. After 3 rounds of OC, losing my teeth and half my lower jaw, somehow Im still alive after quitting almost 9 years ago. I would not be here if I had not quit. Out of the hundreds of OC patients Ive met, I dont know of a single one who continued to use tobacco and survived. Do yourself a favor and think this over next time you have a craving for a cigarette.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Nov 2015
Posts: 18
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Posts: 18
Hi Paul,
Checking in to see how you are doing.. smile hope things are going ok. I know how rough things are, but know that the end of treatment is in sight!


Wife of a stubborn survivor
Scared of the unknown

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