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#147829 04-05-2012 04:44 PM
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Hi my name is Fred and I have stage 2 squamous cell carcinomas. I have had a partial glossectomy (1/3 approx.) and my lymphoids on the left side. I just started treatment (radiation and Chemo)this week.


squamous cell carcinomas Stage 2, 1/26/2012. Surgery 2/15/2012 - Finished Chemo 5/18/2012 Finishing Radiation 5/29/2012
So make every minute count-Jump up, jump in and seize the day-And let's make sure that in every single possible way -Today is gonna to be a great day
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Hi Fred...Welcome to OCF this is the place to be if you have any questions. Many people on he forum are very helpful.

I see your from the Buffalo area I was too. Are you going to Roswell Cancer Center for treatment? Was the cancer on your tongue that's where mine started?

I'm a Buffalo Bills fan too we had season tickets for 20 years before our move.

Take care and keep us posted.

Connie



SCC. of the left lateral tongue, anterior two thirds, T1 possibly a T2.
Left partial glossectomy, left selective neck dissection 4/21/09. Nodes clean, No Rad, No Chemo.

CT Scan 9/11 clean, CT Scan 9/12 clean


Moffitt Cancer Center in Tampa, FL. A+.

My hometown Lockport, NY.



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[quote=ConnieFL]Hi Fred...Welcome to OCF this is the place to be if you have any questions. Many people on he forum are very helpful.

I see your from the Buffalo area I was too. Are you going to Roswell Cancer Center for treatment? Was the cancer on your tongue that's where mine started?

I'm a Buffalo Bills fan too we had season tickets for 20 years before our move.

Take care and keep us posted.

Connie

[/quote]

I am going to the Lipton Cancer Center at RGH (Rochester General Hospital). My cancer was on the left side of my tongue.
I am a Bills fan and a Sabres fan. Watching the game now. Don't know what I am going to do until football starts crazy


squamous cell carcinomas Stage 2, 1/26/2012. Surgery 2/15/2012 - Finished Chemo 5/18/2012 Finishing Radiation 5/29/2012
So make every minute count-Jump up, jump in and seize the day-And let's make sure that in every single possible way -Today is gonna to be a great day
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Fred, welcome to OCF! Sorry you had to join us but you have found the very best site for advice and info about oral cancer.

I see you are just beginning your treatments. The advice I have for you would be to eat everything you love now before your sense of taste changes. Dont worry, its a temporary thing for most of us. During treatments you may lose your desire to eat and drink but you must force yourself every single day. You must get a minimum of 2500 calories and 48 oz of water. No slacking when it comes to this! Dont think you can make it up the next day if you fall short. It doesnt work like that! The better your nutrition and hydration, the easier it will be to get thru this and bounce back to your old lifestyle.

It can seem like a long and never ending road, but you can do it! I wish you the very best 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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Hi there good luck! My cancer was similar to yours!! Rads and chemo is not easy but doable!!! Rinse frequently - use your trays - swallow as much as possible - and use your cream! and take care - we're here if and when you need us!!!

Last edited by Cheryld; 04-05-2012 08:58 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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[quote=Cheryld]Hi there good luck! My cancer was similar to yours!! Rads and chemo is not easy but doable!!! Rinse frequently - use your trays - swallow as much as possible - and use your cream! and take care - we're here if and when you need us!!! [/quote]

They gave me no cream confused

Is there an over the counter you recommend ?


squamous cell carcinomas Stage 2, 1/26/2012. Surgery 2/15/2012 - Finished Chemo 5/18/2012 Finishing Radiation 5/29/2012
So make every minute count-Jump up, jump in and seize the day-And let's make sure that in every single possible way -Today is gonna to be a great day
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[quote=ChristineB] The advice I have for you would be to eat everything you love now before your sense of taste changes. D

It can seem like a long and never ending road, but you can do it! I wish you the very best with everything! [/quote]

I have lost some taste due to the surgery. I cannot really eat solids due to my teeth where bad they had to remove the uppers and wont get replacements until after radiation.


squamous cell carcinomas Stage 2, 1/26/2012. Surgery 2/15/2012 - Finished Chemo 5/18/2012 Finishing Radiation 5/29/2012
So make every minute count-Jump up, jump in and seize the day-And let's make sure that in every single possible way -Today is gonna to be a great day
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People here like aquaphor and a few others I'm sure they will recommend - (they don't generally give you a cream - but they should tell you to buy one.) My hospital recommended 2 - glaxal base (which isn't available in the states ) - it was perfect for radiation, thick and creamy but not greasy! And Lubriderm which is great for now, not thick enough for treatment - aquaphor reminds me of Vaseline - not my favorite but it works... Just make sure your neck is clean prior to going in for rads - bring some with you and put it on afterwards - I'd actually run to the bathroom put the cream on and then rinse with the baking soda mix I carried in my purse... smile

I'm not sure if they talked to you about antioxidants and vitamins etc... They recommended no antioxidants and to make sure my vitamins didn't have an excessive amount in them. Antioxidants clean up free radicals - however this is counterproductive to radiation which uses free radicals to damage the cancer cells.

Good luck - you'll get through it!


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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Ask your rads doc for prescription cream. The nurses probably have samples they can give you for free. I used Beta-Val. There are many different ones. No matter which one works for you make sure you follow these 'rules'. Always pat it on your skin, never rub it in. Let it soak in. Never put cream on right before you go into radiation. Always wait til after you are finished. Apply it several times per day.

When I did rads, it was scheduled for 2pm every day. I would take a shower around 7am and lightly put the cream on. It would soak in within about an hour. After rads, I would apply a good thick coating of cream while my son was driving me home. Then again about an hour before bedtime I would apply more cream on my neck to let it soak in overnight. At the end of radiation, I had some pretty bad rad. burns on my neck. The nurses would cover them with gauze before they put the mask on me. My neck was burned pretty badly with open oozing sores but I kept patting the cream on and it healed without any scars.

Good luck!


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 saw the LPN and she recommended a few over the counter creams. I don't have the list with me right now. One of them I think was utter cream.


squamous cell carcinomas Stage 2, 1/26/2012. Surgery 2/15/2012 - Finished Chemo 5/18/2012 Finishing Radiation 5/29/2012
So make every minute count-Jump up, jump in and seize the day-And let's make sure that in every single possible way -Today is gonna to be a great day
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Is that like "udder" cream from a cow?


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.)



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[quote=Anne-Marie]Is that like "udder" cream from a cow? [/quote]

udder cream is what they put on the utters before milking


squamous cell carcinomas Stage 2, 1/26/2012. Surgery 2/15/2012 - Finished Chemo 5/18/2012 Finishing Radiation 5/29/2012
So make every minute count-Jump up, jump in and seize the day-And let's make sure that in every single possible way -Today is gonna to be a great day
Joined: Jun 2007
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Many people have used Aquaphor. That is available over the counter.


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: Aug 2011
Posts: 596
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Sounds like "Bag Balm" (the Utter Cream). Personally, I like Aquaphor if you have to use over-the-counter balms. It's very expensive, but you can get a large jar of Target or CVS brand in the baby care section. I would think something by prescription would be better or used in combination with aquaphor.

Best of luck in getting through your treatments! You seem to have a good attitude and that can make a huge difference!

smile Kerri


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!
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