| | Joined: Feb 2012 Posts: 34 Contributing Member (25+ posts) |  Contributing Member (25+ posts)
Joined: Feb 2012 Posts: 34 | Go for it John!.. it is worth it.. my girl went thru it and came out OK!.. managed to kill the active nodes..
Things you need to practice is loads of liquid.. mouthwash...u will be good.. don't worry much...
CG to Ida (33yo f)Tongue CA Stage 1
02/07/11 Biopsy
15/09/11 35x IMRT done
07/11/11 CT Scan - Cleared!
02/12 - Abnormal bump discovered -
27/0212 -Biopsy done
It's back!!! wTH....
Surgery Done , 3cm margin and 55 negative nodes cleared
Rehab begins
| | | | | Joined: Mar 2012 Posts: 1 Member | | Member
Joined: Mar 2012 Posts: 1 | Hi John,
I am really sorry to hear about this. I was 26 years old and my tongue cancer was discovered exactly like yours. I had a canker sore on my tongue that would not heal and after 4 months of going back and forth to the doctors, they performed a biopsy and discovered it was cancer. In April, 2011 it was stage 1 and I had a small piece of my tongue removed and a radical neck dissection. Unfortunately, my cancer returned and has been very aggressive. I am stage 3 now and had 60% of my tongue removed. I have a feeding tube and can't speak. I start radiation and chemo in 4-6 weeks. I am 27 now and struggling everyday.
hetal talwar
| | | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 5 | Heal hopefully the rads will do the trick... Did they rebuild your tongue?
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: Mar 2012 Posts: 9 Member | | Member
Joined: Mar 2012 Posts: 9 | Hi, John! I wish you much success with your healing and hope you never hear that C word again! The healing will take time and your life will change, but always remember that you are a survivor! | | | | | Joined: Feb 2012 Posts: 117 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Feb 2012 Posts: 117 | Hello all. It's been a while since I've posted on this topic of mine. This week I'm officially half way thru radiation. My tongue is very raw, my saliva is thick and my tongue is so swollen I keep biting it in my sleep and have this horrible gashes that won't heal so I'm unable to talk. I'm very tired and require codiene and Xanax to be comfortable for any length of time. I haven't lost any weight yet but all I can eat is those boost shakes.
Half way thru!!!
Taking a break from the forum for a while. Thank you so much for your support if you've been supportive.
| | | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 5 | You'll get there - and we're here to help! 
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: May 2012 Posts: 19 Member | | Member
Joined: May 2012 Posts: 19 | Stay Strong John! I am 26 and just got out of surgery a week ago. Counting on you to get through this so I can too 
T2N0M0
26 at diagnosis. Non smoker, social drinker, HPV -
Surgery May 15, 2012: Left Partial Gloss + 48 nodes removed, not 1 cancerous! Perineural Nerve Invasion. IMRT x34. Staying positive!
| | | | | Joined: Nov 2009 Posts: 493 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Nov 2009 Posts: 493 | John, my neck looked awful when I was halfway through rads. I couldn't even bring myself to look in the mirror, but it WILL get better. Hang in there!
Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
| | | | | Joined: Aug 2011 Posts: 596 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2011 Posts: 596 | We're all here cheering for you, John! You are brave and strong! Thank you for being a power of example and a testament as to what the human body can do when faced with such challenges!
37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
| | | | | Joined: Feb 2012 Posts: 117 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Feb 2012 Posts: 117 | 3 more treatments and I'm done! Then I just have to heal.
Right now I'm just worried about how much time it will take for me to be able to talk without being in pain. My medical leave is only until the end of June and I really need my tongue to feel better a month from
Now.
I just can't believe it's almost over. It feels like just yesterday it was looming over my head and then it seems like I just started as well.
I truly won't miss it
My passion to get back to work isn't as strong this time. My boss told fellow co workers of mine to ignore my fundraiser and that I was just a beggar begging for money. I'm just eggar to get back to work so I can get back to theater and get my quality of life back.
Taking a break from the forum for a while. Thank you so much for your support if you've been supportive.
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