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Joined: Feb 2012
Posts: 34
ALZ Offline
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Joined: Feb 2012
Posts: 34
No prob cheryl wink.. Its cancer off weekend for us now.. Taking her out for anything she want to do.. Buy bags..shoes..food.. Need her spirit up before surgery..


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: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
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"OCF Canuck"
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GO for it - enjoy!

Last edited by Cheryld; 03-11-2012 07:59 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
Joined: Feb 2012
Posts: 34
ALZ Offline
Contributing Member (25+ posts)
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Joined: Feb 2012
Posts: 34
Little update from us.. Ida is going for her surgery tomorrow morning... And i know i should b strong but lOoking at her today having pain after she had her PEG breaks my heart... We were up n down in hosp since yesterday doing tests etc for the twelve hour surgery tommorow morning... Im breaking down thinking how its going to change her.. But i want her to be better n cancer free.. I dont know guys.. This is so tough for me right now.. So tough n couldnt imagine if anything would go wrong during surgery.... I need ur support.. Im alone.. We doing this not in own country... N i hv no one here except her n shes now at the hosp n im just bck to my hotel room.. Need to clean up n rest.. But instead im breaking apart...... Help... Will life change.. Will she b happy again.. Oh god i need u now


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: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
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"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
Likes: 3
She'll be okay - i've had a portion of my tongue removed, and was eating soft foods within 9 days (not sure why they pegged her... Usually that's reserved for radiation as its more long term ) - her healing period may take longer as she's had radiation only a short time ago. But I suppose they're being cautious. I'm assuming they're just removing a portion of their tongue and maybe doing a neck dissection - if that's the case - she may have some difficulty talking - and eating for bit but should recover ok - as long as she avoids infection, and doesn't have too much trouble healing.
Take care... She should be ok assuming her drs. are good etc...Give her a hug from me and tell her I'm saying a prayer for her.

Last edited by Cheryld; 03-20-2012 05:15 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
Joined: Jun 2007
Posts: 10,507
Likes: 7
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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I wish you all th every best with Ida's surgery. Please post an update for us when its over. I know its hard! Sometimes being the caregiver is harder than being the patient. Having to sit back and watch everything and still try to be strong can be a very difficult task. Some caregivers end up on anxiety meds to deal with all the stress.

When Ida finishes this surgery she may or may not look different. You will soon be tested as to how strong your bonds really are. Looks really dont mean very much. Sure to the outside world they do but its still Ida inside. Im speaking from experience on this. I am missing a big portion of my face, half my lower jaw. People may stare if she doesnt look the same. From what you described she should look pretty close to herself. You will never be able to change the fact that no matter what the outside shows its still your sweet Ida on the inside. Her voice could be a little different but its still her. If she requires additional reconstructive surgery to look better, it will be done a year from now. Her body needs to first recover fully. Swelling can take months to recede. Usually after the first month most of it will be gone.

Ida is very lucky to have you in her corner. Make sure you dont worry yourself so much. Please take care of you and try to stay very busy. Time can be an enemy making you worry about 'what if'. Keeping busy will help pass the time a little easier.

Best wishes to you both!


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: Feb 2012
Posts: 34
ALZ Offline
Contributing Member (25+ posts)
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Joined: Feb 2012
Posts: 34
Quick updates.. The surgery took13 hours and post 7 hours due to her new tongue blood vessels was clot n it turned blue.. Was hell panic.. But shes recovering now! Bad thing was.. Bed sores developed due to long surgery hours..
Good thing.. Managed to take out all cancer with margin 3 cm! N 55 nodes.. None positive!!!!
Happyyy.. But recovery road is bumpy right nw.. What can ease down bed sores pain?? She took tramadol, panadol, xanax even.. None works.. The ointment we got is just to repair the bed sore not as pain mgmt.. N muscle relaxant is a no no by doc


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: Jun 2007
Posts: 10,507
Likes: 7
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 7
Happy to hear Ida's surgery was a success! Sorry to hear about her pain. There are several different creams that will help with bedsores. They are very heavy, thick creams which should be patted on, not rubbed in. This will make a barrier between her skin and the sheet to help it heal. There are many pain meds, fentanyl is the strongest. There is morphine, oxycodone, lortab, etc. To prevent further sores she needs to be frequently repositioned.

Best wishes for a speedy recovery!


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 2006
Posts: 2,671
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Nov 2006
Posts: 2,671
Glad to hear about Ida's update and that the surgery went so well. Hope Ida gets some relief soon from the bed sores and the pain. Stay in touch and let us know you you both are doing.


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
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"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
Likes: 3
So glad she's doing well! Best thing for bed sores is getting up and moving around - dressings with the right meds with help them heal but seriously walking will help. Hugs and good luck


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 2010
Posts: 638
klo Offline
"OCF Down Under"
"Above & Beyond" Member (500+ posts)
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"Above & Beyond" Member (500+ posts)

Joined: May 2010
Posts: 638
Alex had one bedsore on his tailbone and the nurses put plastic skin on it and changed it every 2 or 3 days. I also put an eggcrate mattress overlay on the bed at home and leapt up and down at the hospital until he got an airmattress or ripple bed (can't remember which one now).

Great news about the clear margins and negative nodes - sounds very promising indeed.

Re pain killers. Does the hospital have such a thing as a pain management team? They are great at putting cocktails together that work and are less fearful of the big guns (opiates) that others fear. I can't imagine that Panadol even in combination would be strong enough for your needs - Might it actually be Panadeine Forte?

Alex managed pain with a combination of fentanyl(worked his way up to 150mg patches), long acting oxycodone ?10mg(Oxycontin) and short acting oxycodone ?5mg (Endone) to manage pain after lung surgery as well as radiation and tumour pain. Whilst the cause of Alex's pain was different, I suspect the severity was similar to Ida's situation. Something to ask your doctors about as a starter anyway?


Karen
Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes
Dx March 2010 51yrs. Unresectable. HPV+ve
Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31
Chemoradiation (IMRTx35 + weekly cisplatin)
Finish Aug 27
Return to work 2 years on
3 years out Aug 27 2013 NED smile
Still underweight
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