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MandaRe #190113 06-26-2015 02:29 PM
Joined: Jun 2007
Posts: 10,507
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
Best thing you can do is focus on what is within your control.... your intake! Every single day strive for a minimum of 2500 calories and 48-64 oz of water. These are the bare minimums! If you can take more in, do it. By pushing yourself with your intake it will ultimately only help make this easier on you. Plus when getting chemo, you will want to flush that poison out of your system with extra water.

Hang in there, we are in your corner smile


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
MandaRe #190114 06-26-2015 03:32 PM
Joined: Jul 2012
Posts: 3,267
Likes: 1
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
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You're right. Should have said hypothyroidism, and is what I have. Chemo side effects can take a few days, and some longer with 5-FU, but that's a good sign so far. Christine gave sound advise with adequate nutrition and hydration, and sure the center spoke about impeccable oral care, and prophylaxis to help with oral infections and mucocitus which can occur with chemo, besides with radiation. Good luck over the weekend.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






MandaRe #190115 06-26-2015 03:53 PM
Joined: Nov 2009
Posts: 644
Likes: 1
"OCF Down Under, Kiwi"
"Above & Beyond" Member (500+ posts)
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"OCF Down Under, Kiwi"
"Above & Beyond" Member (500+ posts)

Joined: Nov 2009
Posts: 644
Likes: 1
MandaRe, you are going well so far. You have momentum.

I always get my hypos and hypers mixed up on the spur of the moment but yes, I had a blood test for low thyroid a few months ago and it turned out that my thyroid was okay but iron levels low. My fatigue was completely cured by iron tablets: a good outcome. Seems as if one thing doesn't cause fatigue another will.

I'm watching your posts with interests and cheering you on:)


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.
MandaRe #190164 07-03-2015 08:58 PM
Joined: Jun 2015
Posts: 25
MandaRe Offline OP
Contributing Member (25+ posts)
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Joined: Jun 2015
Posts: 25
To all those here in the US--I hope you all enjoy the 4th of July weekend with friends and family! :-)

Alpaca,
The last two days (Day 9 and 10) I feel almost like "me"!!! My energy is coming back and any pain from the mouth sores (which showed up late evening of Day 6) is merely discomfort here and there since the pain mgmt team got in immediately and helped me get it under control. So Cycle 1--day 4 -7 the fatigue increased each day but day 8 started turning around significantly.
Surgery cites are healing nicely--the pressure from the mushroom in my stomach (PEG tube) still bugs me here and there but that improves every day as well.
Today I woke up, stretched, looked out the window and noted what a pretty day it looked like it was going to be and only then remembered the cancer in my tongue. I wasn't expecting to have a morning like that for a very, very long time.
I'm taking each day as it comes, hoping appetite starts to come back before I begin Cycle 2 on July 15. I know Cycle 2 may be completely different from Cycle 1 and I'm just going to take each day as it comes.


DX 6/5/15 Stage 4a SCC left lateral tongue, tumor involves 90% of my oral tongue
LVI and PNI identified
Med Port and PEG 6/23/15
Started Cycle 1 of Induction Chemo (TPF) 6/24/15--3 cycles in total
35 External Radiation sessions and concurrent chemotherapy (2 additional rounds of Cisplatin)
Brachytherapy
Remission as of 2/17/16
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