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#188432 02-25-2015 04:57 PM
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I was diagnosed with Stage 2 1/2 Stage Basaloic Cell Carcinoma on my tongue and 1 lymph node in my neck. My last treatments were on November 26th, 2014. I still am using my GI Tube for most of my nutrients because my throat still hurts so badly despite the painkillers and anti-nausea medications. My biggest problems now are weakness, extreme fatigue, anxiousness everyday that only goes away when I am sleeping. If anyone can give me advice on how to cope with this or how long I will feel like this it would be most appreciated.
Thank you so much in advance!!!!
Sharon Yates

Joined: Feb 2015
Posts: 14
"OCF Canuck"
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Hey! Just a quick note of support...there are many here with waaaay more knowledge and experience than I. Just know you are not alone....After 19 years I am facing this again and assure you....you are totally normal,whatever normal is! Hang in and watch our other friends join in! Keep smiling...CANCER hates that!


Brooklyn Bridge...beat once will beat again!

Unresolved sore throat
Biopsy
SCC Stag 4 base of tongue
RX
RND
Free Fore arm Flap
06/96
Age 40
No MET
No RAD
Clear until 01/15
Biopsy on Flap Implant
MRI
Diagnosis
SCC- Contained to Flap Implant
RX
Repeat of Original Surgery
Age now -59 years
Non -Smoker
Social Drinker
Pre new surgery
Lung CT and Chest X Ray
Typical pre op blood,EKG etc
NUMEROUS consultations
Joined: Jun 2007
Posts: 10,507
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Administrator, Director of Patient Support Services
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Welcome to OCF, Sharon! You have found a great resource for info and support to help you with your recovery phase.

Im so sorry you are struggling with your recovery. At 2 months post rads, you still have a ways to go before you can say you are at your "new normal". One important factor many patients struggle with is their intake. This is what will heal your body. Every single day until (at the very least) you reach one year post rads, your need to have a higher caloric intake. Every day push yourself to take in at least 2500 calories and 48-64 oz of water. If you add some high protein whey powder to your diet it will help as protein promotes healing. Since you are facing recovery issues at 2 months post rads, I would recommend pushing to take in even more calories, like 3500 daily. It cant hurt. After a couple days of higher calories and extra water you should perk up a little. Taking in more always helps me to feel better, I hope it will work for you as well.

You are not alone with this! Many patients struggle with their recovery, they can not get well fast enough. Its terribly frustrating having ups and downs with some setbacks here and there. After OC treatments, it takes a full 2 years to be completely recovered. This cant be rushed but with proper intake it can be easier. Most patients dont understand that their body has been broken so far down it needs extra fuel to rebuild itself and this cant happen overnight or even in 2 or 3 months. Hang in there, as time goes by you will be able to overcome many of your current issues. One thing Ive learned about recovery is that patients can expect to have at least one month of recovery for every week of rads. Many also struggle with the mental aspect of their situation. Ask your doc for some help with anxiety meds. Try seeking out someone to talk things over with. Most treatment facilities have special therapists who counsel cancer patients.

Best wishes!


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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"OCF Down Under, Kiwi"
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Hello, Sharon. Christine has given you great advice. Nutrition and professional help for your anxiety are both big factors in recovery. Learning strategies like mindfulness are helpful while some of the tools of cognitive behavioural therapy are useful too. Best of all is talking to people who've been through the same thing. You can do at here. You can vent!

I don't know how I did it now but I managed to drag myself into the city to take part in a Cancer Society Moving Forward course. It was not long after radiation but it was just what I needed. Whatever groups or cancer related counselling you can access will be of benefit.

I wish you well and hope you see some reduction in the pain soon.


1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
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"OCF Canuck"
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"OCF Canuck"
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Joined: Dec 2010
Posts: 5,260
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Also try tailoring your intake to stuff you feel may help or be soothing. I remember when I was going through it everything - even my own saliva felt like acid hitting the back of my throat... I would cringe when I knew something was going down and then wait for the burn. Then one day a few months out... it didn't happen. It was such a relief. You will get there. Healing from rads and chemo is a long term thing (well mostly rads as chemo generally dissipates in a few months) Have you tried Manuka honey? It burns like a bitch but it's soothing and healing and has a whole bunch of other benefits. It can't hurt (on a medical level) and it might help. Also try saline rinses and perhaps some flattened club soda. All have the potential to heal, and the club soda and manuka you can swallow.

Also try and adjust your pain meds so that you take them just before you eat if it's possible (usually they take 15 minutes to 30 to kick in), or even ask for magic mouthwash swish (and swallow if your formula allows) once you're numb try drinking some nutrition - maybe a protein shake or smoothie. Avoid things that are acidic. I lived on pudding, and protein shakes etc... Being able to do this will help you feel more normal and likely brighten your spirit. Hugs and welcome.


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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