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#144227 12-23-2011 09:10 PM
Joined: Jun 2011
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EllenB Offline OP
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Hi All,
I have been gone for awhile and so wanted to report on our progress. My husband's first PET scan was totally clear. He is gaining back his taste although it is different. He used to be a stir fry guy and now all he wants is steak and potatoes, pasta, fish and other meat. I bought a slow cooker and so can make special chicken dishes, pork roasts and other soft dishes with gravies. He is even able to eat sandwiches and pizza again. He does not take naps any longer and that makes him happy. He is back to work and that makes him happy. The most lasting effect is dry mouth. He has to use biotene products all day long, gum, spray and special toothpaste. He does have occasional swelling in his face: lymphedema. We did figure out how to massage his face so that the swelling goes down.
He is seeing his docs every 6 weeks for the first two years. We hope that he will remain clear. They told us that if he stays clear for two years that it is a very good sign. I will have to spend some time reading other posts. I have been very busy with work.
I am going to see a counselor as I do feel as if I have some post traumatic issues that I am dealing with. I have some fears that I do not express to him since he needs to stay positive.

Happy Holidays to everyone,
Ellen


caregiver for husband
diagnosed with oral cancer May 2011 after 6 mo
node lft side and several in jaw involved
Base of Tongue Stage IVA
7 weeks radiation
Cisplatin-3 chemos (beginning,middle,end) IntraV administration
Joined: Nov 2002
Posts: 3,552
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Welcome back Ellen and that's great news about your husband.

I pretty much craved the same foods about a month post Tx, especially salads. Chicken tends to be on the dry side and I always have difficulty with it. It has to be really moist or cooked in a creamy sauce.

I too saw my team every 6 weeks for the first 2 years.

That's excellent that you are taking care of yourself. Caregiving is very hard. My wife had a complete meltdown after I was done with treatment.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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So glad you both are doing well happy holidays! And remember to be kind to yourself.


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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Ellen, sorry to read about your own psychological problems and I hope you can get help with them. But mainly I'm delighted that your husband is through the worst and had a clear PET. Sounds to me that you can finally begin your new life together. We all know how tough it is to get through this stuff, but having you there was and is as important as any of the medical stuff, IMO.

I hope you have a wonderful holiday and bright new year.


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
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Nice to see you posting Ellen. Even nicer to see how well your husband is doing with his recovery. Many caregivers find themselves needing a little aid to return back to their old lives. Best wishes to you both!

Happy Holidays!!!


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: 2,671
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So glad you are back with us, Ellen - and that your husband is doing well. You've both been on quite a ride, but things are definitely looking up. It's good that you are taking care of you, too. Sometimes caregivers need a caregiver to get back to some kind of "new normal".


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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Hi, Ellen
glad to hear from you! Great news about your husband's scan!

I think that seeing a counselor is a fine idea - they will be able to help you manage the stress. I've only recently been able to feel good - kind of a weird feeling. Take care and happy holidays to both of you.


CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
Joined: Jun 2011
Posts: 147
EllenB Offline OP
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Posts: 147
Happy Holidays to all of you. It feels good to be back with all of you who were so supportive during our difficult time. Things are certainly improving here although the new normal is something that takes time to get accustomed to. The holidays have been wonderful so far. All of our boys are home and my hubby is able to enjoy them since he has a bit more energy. I have been enjoying the time off from the university and just hangin around in sweat pants until noon. What a gift. I wish all of you the very best in the New Year. You are all so special. I will go look at some other posts and see if I can be supportive of some others as they travel this difficult path.

Best to all of you my friends.

Ellen


caregiver for husband
diagnosed with oral cancer May 2011 after 6 mo
node lft side and several in jaw involved
Base of Tongue Stage IVA
7 weeks radiation
Cisplatin-3 chemos (beginning,middle,end) IntraV administration
Joined: Jan 2009
Posts: 1,844
Patient Advocate (1000+ posts)
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Patient Advocate (1000+ posts)

Joined: Jan 2009
Posts: 1,844
Hey HEY EB!!!

Good to see you on here sista! So good to hear things seem to be improving for you and may I say...bravo for feeling the urge to help others on this crazy path. I know helping others has been important in my own healing process and makes me feel good about myself.

Good on ya girl!


Eric!


Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.

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