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#194763 06-28-2017 01:15 PM
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Stef H Offline OP
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Hi all; it's hard to say what week I am in since I didn't start on a Monday!

Today is my 12th session. Starting to get some side effects though swallowing is still good. My tongue is not as happy.

I see the doctor today as part of our weekly meeting and will make her check it out.

Staying positive - watching a lot of comedy, hanging out with friends, and working hard to not let pain get ahead of me.
Still working but not putting in a full 40, more like 30. I nap a bit and need more sleep than before.

My boss has been very understanding.

Bracing myself for more side effects and trying not to stress.

Thanks to all for the support.
Stef


Keep fighting friends!

Me -- currently 53 years old
SCC diagnosed 3/7/2017 at age 48
Staging SCC HPV+ T0,N1 primary unknown
PET 3/16, no activity, biopsies 3/23 benign
TORS surgery identified 2mm tumor in BOT (vallecula)
Cancer restaged T1, N2, M0
Begin 30 sessions of radiation (60 Gy) 6/13
Completed radiation 7/24/2017
1st MRI clear 10/23/2017!!
2nd MRI clear 10/17/2018!
Stef H #194764 06-28-2017 03:40 PM
Joined: Jun 2007
Posts: 10,507
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Stef, sounds like you are doing great!!! I hope you are making sure you are hitting your daily numbers for calories and fluids. If you begin to have trouble taking in enough water speak up and tell your physicians or nurses and get extra fluids in the chemo lab. That will make a big difference in how you feel. I always felt so much better after a couple bags of extra fluids.

Hang in there!!!


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
Stef H #194767 06-29-2017 06:15 AM
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Posts: 81
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Stef H Offline OP
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Thanks! Great idea. They test my fluid levels with blood pressure - lying down and then standing up.

Is it my imagination or do they vary the amount of radiation? Feels like Wednesdays when they do the weekly CT scan that day has more radiation - seems like I have more symptoms. I will ask the techs; they have shown me how all the equipment and software works. Very open!)


Keep fighting friends!

Me -- currently 53 years old
SCC diagnosed 3/7/2017 at age 48
Staging SCC HPV+ T0,N1 primary unknown
PET 3/16, no activity, biopsies 3/23 benign
TORS surgery identified 2mm tumor in BOT (vallecula)
Cancer restaged T1, N2, M0
Begin 30 sessions of radiation (60 Gy) 6/13
Completed radiation 7/24/2017
1st MRI clear 10/23/2017!!
2nd MRI clear 10/17/2018!
Stef H #194770 06-29-2017 07:07 AM
Joined: Jun 2007
Posts: 10,507
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Stef, when I did my rads in 2007 I started out by being on the table for only a few minutes. By the time I was at the end of my treatments, the time I was there was considerably longer than when I first started. To me I thought as treatments progressed they were extended. Im interested in hearing what your techs have to say about this. Im much too far out since rads finished to always remember all the details. Chemo brain is a very real thing!!!


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
Stef H #194772 06-29-2017 10:04 AM
Joined: Oct 2012
Posts: 1,275
Likes: 7
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I was told what they do si to divide the total greys by the number of days; so, 20 greys over 5 days will be 4 greys per day, 70 greys over 35 days will be 2 greys per day. John's RO told me that was why he might feel a bit worse when he was getting 20 greys than when he was getting 70 greys. I never got a sense that it was incremental.

I was the caregiver, so I never had chemo, but I can tell you that one and a half years out, my brain really cannot remember all the details that I knew and lived through. Someone suggested it was probably a case of the mind not wanting to remember.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
Stef H #194780 06-30-2017 05:14 AM
Joined: Apr 2017
Posts: 61
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Doing great Stef! I just finished my 8th! Lets hope this journey is smooth sailing!


04/21/17 Biopsy at ENT
04/25/17 Biopsy result SCC on left side tongue
04/27/17 CT Scans--shows shallow tumor
05/02/17 Pre-op
05/03/17 Surgery to remove tumor
05/08/17 Cancer still present
05/10/17 2nd surgery-
06/05/17 PET on 6th, RADS start on 06/20/17
07/11/17 Halfway point!
08/01/17 Last treatment
11/1/17 Cancer is back
11/15/17 Emory University surgery. neck dissection, left lymph nodes removed, tongue free flap from left arm with skin graft.
Stef H #194787 07-01-2017 06:12 AM
Joined: Apr 2017
Posts: 81
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Stef H Offline OP
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Wendy, thanks. Have been thinking about you!

Gmcraft is correct; the techs told me it is the same dose every time.

Christine - was set up taking longer? My mask is getting tighter and it takes a little longer for them to "pin me down." Definitely less comfortable and the mouthpiece is more cumbersome due to tongue/tooth pain.




Keep fighting friends!

Me -- currently 53 years old
SCC diagnosed 3/7/2017 at age 48
Staging SCC HPV+ T0,N1 primary unknown
PET 3/16, no activity, biopsies 3/23 benign
TORS surgery identified 2mm tumor in BOT (vallecula)
Cancer restaged T1, N2, M0
Begin 30 sessions of radiation (60 Gy) 6/13
Completed radiation 7/24/2017
1st MRI clear 10/23/2017!!
2nd MRI clear 10/17/2018!
Stef H #194790 07-01-2017 07:22 AM
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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The tightness could be from inflammation. Check this with your doctor next time you see them. Some patients lose so much weight they need to have the mask redone due to it becoming too loose.

The set up towards the end of rads was not taking any longer. I was on the table at least 15 minutes longer during the last week than when I first began. When strapped down a few minutes can feel like its forever!!!


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
Stef H #194791 07-01-2017 09:02 AM
Joined: Apr 2017
Posts: 81
Likes: 2
Stef H Offline OP
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Posts: 81
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That's so weird - and awful - that you had to wait so long! Very curious as to what they were doing!


Keep fighting friends!

Me -- currently 53 years old
SCC diagnosed 3/7/2017 at age 48
Staging SCC HPV+ T0,N1 primary unknown
PET 3/16, no activity, biopsies 3/23 benign
TORS surgery identified 2mm tumor in BOT (vallecula)
Cancer restaged T1, N2, M0
Begin 30 sessions of radiation (60 Gy) 6/13
Completed radiation 7/24/2017
1st MRI clear 10/23/2017!!
2nd MRI clear 10/17/2018!

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