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#91454 03-09-2009 03:45 PM
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Hi all,

I had my 4th partial glossectomy on 2/11. Usually by this time I'm back to my old self. I don't know if I was lucky before but I'm still feeling awful and in a lot of pain. My tongue constantly burns. I have some pain medicine called Altram and that helps but makes me constipated, not to get too graphic. I'm feeling very frustrated and need some support. Do you think it's just taking longer because it's the 4th time? My wedding is less than 2 weeks away and I'm scared I will still feel this way then. Everyone keeps telling me this is supposed to be the best time of life but it's really hard to enjoy it right now.

Ray is so womderful but I no I'm no fun to be around right now and I feel bad.

Any thoughts, suggestions and wisdom would be appreciated.


Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
suzanne98 #91462 03-09-2009 04:16 PM
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Suzanne

I feel so bad for you. Im so sorry you are still feeling poorly. Make an appointment and see your doc, let them know you still feel lousy. Maybe a different pain med would be better.

Sometimes it just takes a while to bounce back from surgery. Rushing into getting back to work and running around planning your wedding are probably adding alot of stress. Try to rest and relax and you will feel better, but check with the doc.


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: 1,004
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Thank you Christine. You're going through so much yourself. I feel so upset and sad and that usually is not me. I feel like I need a hug!!!


Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
suzanne98 #91470 03-09-2009 05:23 PM
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Posts: 10,507
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Of course you are sad and upset, you are worried about all this having an impact on your special day. Who wouldnt be upset about that? Very soon is the day all little girls have dreamed of and it needs to be perfect. That alone is enough to stress you out.

Hope I helped, maybe even just a little. Call your doc and go see them, it will make you feel better.

I would give you a big hug if I was closer. I do plan on seeing you in May at the Bethlehem walk. I will give you a hug then and you can tell me all about the wedding. This whole thing will be a distant memory very soon smile

((((((((( BIG HUG ))))))))))


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: Dec 2008
Posts: 1,004
Patient Advocate (1000+ posts)
OP Offline
Patient Advocate (1000+ posts)

Joined: Dec 2008
Posts: 1,004
Thanks so much Christine....you are so sweet. I can't wait to meet in you May. Hopefully we will both doing better then.

You did help...a lot. You made me cry and I'm not crier!!!

((((((((((((((((((BIG HUG))))))))))))))))))


Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
suzanne98 #91479 03-09-2009 06:20 PM
Joined: Jun 2007
Posts: 5,260
Patient Advocate (old timer, 2000 posts)
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Suzanne, I would bet it hurts more because it's the 4th time. Mine burns all the time when i try to eat and sometime when i get arid dry mouth. Like christine says, get on your Dr fr something that will help you more and as for the constipation, I think that's just part of pain pills. Hers a hug from a dirty old man too, (((((((((((((((((((HUGGIN BIG TIME)))))))))))))))


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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Posts: 113
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Posts: 113
Christine and Suzanne............I just gave each of you a big big hug..........Did you guys feel it ? I hope so. Love, Claudia


Husband 2/3 tongue removed March 2008. Free flap. . Stage IV. Radiation and 3 chemo's (cisplatin,taxol & erbitux). .Pet scan Aug 08 showed mets to lungs .Oct 08, recurrence. - In the arms of Jesus, July 15, 2009
Joined: Aug 2008
Posts: 531
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Posts: 531
Suzanne...I know how important your wedding and your man are to you. It is written all over your posts!!! I am not sure about the pain and symptoms of your surgery but I can give some support and send out my very best vibes, great wishes and hugs!!!Please I know it seems repetitive but try to relax and seeing your doc couldn't hurt....Rest heal and soon you will be Mr & Mrs!!!


Dianne..treatment at cc at Victoria Hospital, London, Ontario...insulin dependant, Surgery Sept 8/08 Tracheotomy,composite resection and bilateral neck dissection, left radial forearm free flap... T2N0 squamous cell carcinoma. No radiation A little over 2 yrs clear YAY
suzanne98 #91490 03-09-2009 08:04 PM
Joined: Jun 2008
Posts: 475
Platinum Member (300+ posts)
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Joined: Jun 2008
Posts: 475
Hi Suzanne,

I am so sorry you are not feeling better. I am thinking of you! Just focus on your wedding day and your husband to be ! You will be fine by then and once you walk up that aisle, you will feel only happiness!

I am looking forward to meeting you at the Bethelem walk!

Take care of yourself!

Susan


Susan Lauria - OCF Director of Events - Always looking for volunteers to help spread the word about early detection! Contact me if you can help!

*Brother passed away from tongue cancer in 2006 at age 47, was co-caregiver, he was non-smoker/casual drinker

LETS MAKE ORAL CANCER HISTORY!
suzanne98 #91497 03-09-2009 10:34 PM
Joined: Mar 2008
Posts: 3,082
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Suzanne

Okay for you I will assume the risk of not being Charm but "Mister Seltzer water " (I'd prefer to just be associated with Seltzer like David with VHC and HPV )
Seriously although this is my first one, already my tongue burns and the Salt water rinse they gave me in the hospital made it worse. Something about the fizz in the Seltzer resonates with me and I picture it like in the TV commercials with little "scrubbing bubbles" scouring my tongue clean with no damage to tissue or stitches.
The key is to buy only single use cans no larger than 12 fl oz. Be sure not to get "tonic" water which is similarly packaged or the sugar flavored versions, - just plain old Seltzer. Pop one open, pour into glass and swish and spit. I have to use a syringe this time around. It can't hurt to try.
If that doesn't help then you have to go with the old punk song standard that came out just about when you were born: "Sex and Drugs and Rock n Roll" plus suppositories (better than any laxative)
Best wishes and fervent prayers heading your way

Last edited by Charm2017; 03-09-2009 10:36 PM.

65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
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