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

Joined: Dec 2008
Posts: 1,004
Hi Debbie and welcome to OCF. I did not have the same treatment but I've been on the forum for a while so I know it's not easy. I'm sorry you and Jim are dealing with this but I'm happy you found this forum..it will help a lot.

I just wanted to welcome you and to let you know we are all here for you and Jim to support you both through this hard time. It's just as hard for the wonderful caregivers too. Us patients know that!! It's nice to have you here:)


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:)
Joined: Mar 2008
Posts: 3,082
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Mar 2008
Posts: 3,082
Jim & Deb
Insist on a TSH level blood test for thyroid so you have a pre-TX baseline on what is normal. Radiation very often damages the thyroid and leaves the patient cold and weak yet because there is controversy over what is the right TSH level with labs having a 5.5, a 4.5 or the most advanced ones in tune with the 21st Century, 3.0 as the highest acceptable level, it is very very hard to get a doctor to prescribe thyroid medication without pre TX baseline. I am a personal example since before TX, I had a TSH of 1.6 and after TX it shot up to 4.3 but no doctor would help me these last two years until I discovered blood tests done by a cardiologist that I got the results from the day after finding out I had cancer so I had paid no attention to the 1.6 TSH. With that, I have finally been started on one little pill that my endocrinologist thinks will bring back both energy and warmth.
I hope you never need the results of this pre TX test
good luck
charm


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
Joined: Sep 2009
Posts: 53
Supporting Member (50+ posts)
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Supporting Member (50+ posts)

Joined: Sep 2009
Posts: 53
Hi I have just recently finish my 4 Chemo and rads 35

I would eat as much as you can now as you willm oooose your apitite and have a lot of flem in your throat I did not have a Peg I just had a nose tube.

The worst your going to have is to try to find the right drugs to stop your nausia then yuou will breeze through your chemo also.

I am now in a state of tiredness and trying to eat by montn 1 month after treatment I eat what I can and drink lots of Pomogranit juise with Grape juice.

I can drink flavered Soya but not milk it brings back the flem you do not feel anything with the rad and after the second day your havee to fight off the 48 hours sickness

eat now as you wont want to later good luck

Its not so bad if you keep coming here and ask questions all can be answered.

teacher Jon


"Base of Tongue Cancer", may be HPV cancer. swollen lymph nodes, half the tongue base Now T2/3 N2 MRI scan and simulation mask, 4 Chemo/35 rad of 35. Tumors gone. can eat. MRI April 19th , Nodes now all gone, was 6 cm, weight GAIN to 81 kg but found 2.1 grey area on MRI. Biopsy next.
Joined: Sep 2009
Posts: 60
Supporting Member (50+ posts)
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Supporting Member (50+ posts)

Joined: Sep 2009
Posts: 60
Jon,
It does my heart good to see you move from needing support to offering it. Keep up the positive attitude.


Flip
_________________________________
Age: 54 SCC Tonsil + 3 nodes
Radiation and Carboplatin
Treatment 4/1 - 6/7/2009
No surgery, no PEG
Never smoked
Drink socially (brew my own beer and love wine. A bottle of scotch lasts me a couple of years)
CT 11/4/09 No sign of envolvement in Tonsil or nodes
Joined: Nov 2009
Posts: 396
Platinum Member (300+ posts)
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Platinum Member (300+ posts)

Joined: Nov 2009
Posts: 396
isnt it amazing to see us that evolve from being needy to helping those in need. just another reason i love this site!
(((smiley with a heartbeat inserted here)))


Teresa
-----------
CG to ANDY. Nasopharyngeal Carcinoma (NPC)
T2N2cMxG4 stage 4. 43 @ dx 8/31/09
tx 9/21/09-11/06/09 cispatin/docetaxel/5-FU X3
PORT 9/9/09, PEG 12/07/09
35 IMRT-1/wk carbo 11/30/09-2/3/10
tx stopped due to complications
IMRT BOOST 3/08-3/12/10
PET 4/12/10 CLEAR!
PEG out 4/14/10
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