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#139682 09-10-2011 03:25 AM
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I have been watching this whitish area on the side of my tongue for quite sometime. Making sure it does not grow, and it hadn't been until this morning. I looked at it this morning and it was noticeably bigger. Have a dentist appt, on Monday so I will have him look at it. MY ENT appt is now until the 20th.
To add to this I have been having intermittent pain in that area and in my ear again. The last few days I wake up to horrendous neck pain. I keep thinking it is a muscle spasming, because I have to turn my head and tweak it a little to get the pain to stop. So I am going to have my dentist take a look at it on Monday as well as repair a crack in my tooth. Will see my ENT a week after that if the dentist is not concerned. May move up my ENT appt if anything changes drastically over the weekend. Keeping my fingers crossed that it is nothing.

Last edited by ChristineB; 09-10-2011 03:38 AM. Reason: wrong topic

Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
Joined: Jun 2007
Posts: 10,507
Likes: 6
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Angelia, you know the drill!!! If a sore has been there for 2 weeks then get it checked by a professional. Given your history, Im surprised you waited. You are usually right on top of these things. I know it happened at a bad time with school just starting. Please let us know what your dentist says Monday. If it were me, I would be going to the ENT on Monday or Tues. ((((HUGS))) and prayers to you!!!!!!


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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I called my ENT about it, but the pain decreased over labor day weekend. Yes school is crazy, crazy, crazy. Right now I will find any excuse to get out of there. smile I am so unhappy, leave school crying almost every day this year. Have to force myself to get out of bed, and remind myself it is for the kids. I can not stand the administration or the politics that are involved this year.

One more thing, it really is not a sore. it is just a white area on the side of my tongue and looks like scar tissue. The fact that it is bigger today is making the alarm bells go off.


Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
Joined: May 2011
Posts: 287
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Just wondering if it is Candidiasis (Oral Thrush), the condition results in white patches that are often cottage cheese-like in consistency on the surfaces of the mouth and tongue.

Anyway, please consult your doctor soon.


Father; 67 yrs; RIP: 2012/05/26

TX:SCC pT2N1M0G2;Glossectomy+SND+CCRT(59.3Gy+6xCis.)[2009]
TX:Nodal Mets; 3xDCF[2011/05/05]
TX: RND + PMMC Flap[2011/07/11]
DX:SCC PNI+ECE
TX:Re-RT 60Gy[2011/09/21]
TX:Gefitinib 250mg[2011/12/18]
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It is not thrush as I know what that looks like. My husband looked at it and said that it does look like the initial cancer I had. A raised lump, painful, and hard. I am now also having some soreness right underneath my right ear and behind my jaw bone. I hate these roller coaster rides.

And to add to that I have been extremely tired these last few days. It is like I wake up in the morning and I did not sleep at all, even thought I have been sleeping all night.


Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
Joined: May 2009
Posts: 1,412
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Christine,
I was just thinking about what you had said earlier about me staying on top of things. I guess all I can think of is the last few times I was worried about a spot on my tongue it has been scar tissue/radiation damage and I got worried for nothing. I keep telling myself it is just radiation damage, but really how do we know that if they do not check it out? I guess I have just been putting it off. My neck has been feeling different for awhile now, but I have just chalked it up to radiation damage rearing its ugly head again. I really did not start worrying about it until the pain began to show up in other places. I really hope I did not wait to long, after-all I had a completely clear PET scan in July, same thing as two years ago with my recurrence. Clear scan in July and biopsy in OCT. showed cancer. In my mind I keep thinking surely it could not happen again that way and show up so soon. Who am I kidding? If it happened once we all know it can happen again. I just do not know if I really want the answer to what it could be. It look just like it did two years ago and is acting just like it. The ear pain started first and then a lump showed up and the rest is history.


Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
Joined: Dec 2010
Posts: 5,260
Likes: 3
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Try not to worry but do have it checked I think if you listen closely enough our body tells you what's up.. The question is do we lsten? Usually yes but maybe because you've been so preoccupied. Try not to worry as you said it could be scar tissue etc... And your ear could be an infection. Just wait until you see your dentist. But don't wait too long - to see your ENT I h suggests it. Hugs! Prayin it's nothing! smile


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
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I see my dentist on Monday and my ENT a week from this Tuesday, which was a regular scheduled visit.


Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
Joined: May 2011
Posts: 287
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Angelia, I am just hoping that is it is not a recurrence and what Cheryl is saying is true.


Father; 67 yrs; RIP: 2012/05/26

TX:SCC pT2N1M0G2;Glossectomy+SND+CCRT(59.3Gy+6xCis.)[2009]
TX:Nodal Mets; 3xDCF[2011/05/05]
TX: RND + PMMC Flap[2011/07/11]
DX:SCC PNI+ECE
TX:Re-RT 60Gy[2011/09/21]
TX:Gefitinib 250mg[2011/12/18]
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Please dont get yourself all worked up! We are all so afraid of a recurrence. But think about it.....we can NOT live our lives in fear of 'what if'. You just have to go on with your life and pay attention to changes.

I was surprised to read your post. You are always so in tune with your body. Its not like you to put things like this off. Lets think logically and positively! Please dont scare yourself about waiting. Its not like it has been this way for 6 months or a year. You have had regular check ups and I know your doctors are very thorough. This has recently changed and now you are getting it checked which is the right thing to do.

Im concerned that you are worrying yourself so much that your body is now focusing on every little twinge. We are always our own worst enemies! Try your very best to keep yourself busy and go get it checked out next week. A couple days is not going to change anything. Please try not to worry, it will not change what is going on inside your mouth. You know you have scar tissue inside your mouth after everything you have gone thru. All kinds of things can irritate our mouths.

Keep us posted!!!!

(((HUGS)))) and prayers to you!


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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You know what you need to do. And, I know what I need to do--I'm sending prayers for it to be completely benign.

Love you, Angelia!

Sandy


Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.
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Actually things were going rather well, and My Dr had taken me off the birth control. My RO actually said we could start out journey of having another child again. So we were in that process and trying to move on with our life and all of a sudden things started changing , little by little but they were changing. I did not get concerned over one little change, but all those little changes began to start developing into things like, ear pain, tongue lump, neck pain, and I finally said I need to get this thing checked out. Knew I had an appt coming up anyway so I did not bother changing it.


Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
Joined: Dec 2010
Posts: 5,260
Likes: 3
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Good, as long as you have it looked at that is the most important thing. Also don't forget working with kids leaves you open to infections etc... An ear infection is highly possible combined with a bug. I'm still hopeful that it's a bug you've picked up and the tongue issue is scar tissue. Hugs and take care!

Last edited by Brian Hill; 09-11-2011 03:25 PM.

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
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Angelia, we are waiting for your report from your dentist today - sending prayers for another one where you come home with a sigh of relief. Hugs, Jane


Husband: 3 SCC gum and cheek cancers 2002, 2005, 2006: surgery only. Scans clear after removal of small, well differentiated, non-invasive cancers. No radiation. 4th SCC lip diagnosed 4/13/07 - in situ, removed in biopsy. More lip removed 2/8/08 - dysplasia. 2 Biopsies 3/17/09 no cancer (lichenoids)
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I did have to have crown on a tooth, and he looked at my tongue and did not see anything visible that concerned him but did hit an area that was very painful to touch. He said that could just be the same issues I have been dealing with due to the side effects of radiation. I was pretty pleased with what he said. He did say that I needed to go ahead and get it checked out by my ENT due to the ear pain.


Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
Joined: Dec 2010
Posts: 5,260
Likes: 3
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Some good news to relieve the stress !! Get it checked out to be sure but I'm glad he was positive! It could be irritation from rubbing up against the tooth that needed he crown as well! Yeah!!! Good luck!

Last edited by Cheryld; 09-13-2011 05:34 AM.

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
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Bet you are so relieved!!!! This is exactly why you need to not sit around worrying. It will only get you more upset and you will feel worse. Now Im praying the ENT agrees that this problem is scar tissue. Good luck with your next appointment!


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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Things sound like they're looking up for you Angelia. I pray that you get a good report on the 20th from your ENT. Since your dentist didn't see anything of concern, hopefully your ENT will do likewise. We just never stop worrying about things that appear and strange pains near the area. I know you cannot get it off your mind, and also dealing with school and the never ending administration/politics you are encountering this year doesn't help. But, those things usually are temporary, and hopefully nothing causing you too much worry, because you don't need something like that to add to your health worries. Maybe, try to avoid/ignore those issues. On the 20th, I pray you get a good diagnosis from the ENT.
Hugs from julieann



Julieann
Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer smile
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Thanks all, but I am feeling better about it all. I think I went overboard when I saw the lump show up out of nowhere. It has actually decreased in size a little, but I am still having the ear pain, opposite side from the crown.


Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
Joined: Dec 2010
Posts: 5,260
Likes: 3
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Maybe you picked up a bug. Welcome back to school! Its the worst place if you are even remotely compromised. In fact even if you are healthy! ;o) Take care and try to give yourself some more time. hugs!

Last edited by ChristineB; 09-13-2011 07:09 PM.

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
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Yes, my whole count is still pretty low and was told it would stay that way. I know I am dealing with some sinus issues. See my PCP next week as well. I am also thinking that the lack of sleep may have something to do with it all as well. I have not had a decent night sleep since I can remember.


Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
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You need a day away to relax and regenerate! If you can't go away plan a me day at home. You've had a lot going on at work etc... so I get the sleeping issues! Broken sleep is the fastest way to get run down. Hugs hopefully you'll feel better soon!


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
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Okay, so last night I went to bed early, and awoke to excruciating pain in my neck. It was almost like a muscle cramping, but not exactly. The pain lasted for about 5 minutes and then went away. Well this morning during second hour while I was teaching the same thing happened and I could not move my jaw due to the pain. I am really trying to not to flip out, but two years ago this exact type of pain happened which is was caused my ENT to go on alert. Needless to say when the pain showed up this morning at school I began to freak. It hurt to so bad tears were coming out of my eyes. This is the same side as the original cancer, opposite of the dental work issues.

Last edited by ChristineB; 09-14-2011 05:36 PM.

Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
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Can you get in earlier to see your ENT? Thats the only thing that will ease your mind... Hugs! And stay strong!


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
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Thanks, and not I really can't. Not because of him, but because of my schedule at work. I know that is the only thing that will ease my mind, well my psychologist will bring back to reality. They have a way of doing that, you know. I see him today. I just have to remind myself just a few more days and I have gone through some of these things before and it just be scar tissue. Some of these things are very different as well. Thanks all for letting me vent on here. I just need somewhere that I can get it out.
I told my husband what was going on and he did nto help me in the least bet. He started talking about if it was back what were we going to do. Hell, if I know.
I am also dealing with a lot at school. One of my student's family is going through a difficult time. His mom is really sick and is going in fore a bone marrow and a muscle biopsy. His brother tried to commit suicide this past weekend. I just can not imagine having a hard time paying attention in the first place and then all this going on, and teachers hounding him about paying attention. Kind of useless, I would think.


Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
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Yes - sorry he's having such a hard time if it... Some teachers are like some Drs. Going through the motions and very task oriented! Sometimes they forget about the individual people they are dealing with. I'm sure some of it has to do with numbers since they see an deal with so many kids/people during the day.

I'm sorry your hubby was of little help. Mine is supportive but doesn't acknowledge the fact that this could come back - so I know how you feel! I didnt really tell him much about what is going on. Just give him updates every now and then!

Thankfully you only have a few more days to wait. And hopefully it's nothing. saying a prayer for you regardless. They never hurt! smile have a great day. I too am off to work!


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 2009
Posts: 1,412
Patient Advocate (1000+ posts)
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Patient Advocate (1000+ posts)

Joined: May 2009
Posts: 1,412
Thanks, I need the prayers. Having more pain today.


Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
Joined: Jun 2009
Posts: 875
"Above & Beyond" Member (500+ posts)
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Joined: Jun 2009
Posts: 875
Angelia: I'm adding my prayers with all the others. I believe in prayers and hopefully yours will be answered.
Big hug from julieann


Julieann
Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer smile
Joined: May 2009
Posts: 1,412
Patient Advocate (1000+ posts)
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Patient Advocate (1000+ posts)

Joined: May 2009
Posts: 1,412
Thanks everyone.


Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
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