| | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | OP  Patient Advocate (1000+ posts)
Joined: May 2009 Posts: 1,412 | My husband said I woke him last night telling him I was one fire. I do not remember that. Anyone else ever done that. I know I remember I was burning up and felt like I had a fever, but I didn't. I am not liking any of this one bit.
Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Hi Angelia...I'm so proud of you. Day one and 2 are over! I know you are going to get through this and I look forward to seeing your posts and hearing how you are doing. I say a little prayer for you every night (assuming I don't fall asleep while I'm still putting my hand cream on..lol)xoxo
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: May 2008 Posts: 357 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: May 2008 Posts: 357 | Hi Angelia -
Hang tough, girl!
Marlene
Marginal mandibulectomy 6/17/08 resulted in DX of Stage I SCC - gingiva (3 mm) right mandible, buccal side. Clear margins. Occasional social drinker. Smoked last cigarette in 1979. Clear pet: 12/08; 7/20/09. Yay!
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Yeah something is not correct. Most of us get appx 70 gys over 7 weeks or 35 days or 2 gy's per day. Now it would be nice to get all our radiation over with in 4 days but our body couldn't take it.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Angelia
You would have to be made entirely out of lead to survive dosages like that in a day. But don't worry about it, it's just a miscommunication with your RO. It happened to me also. Part of the frustration of cancer treatment is the sloppy information we get. Veterans here on the board scoffed when I first posted that I had had 7200 GY and rightly so since it was 72 GY. My RO had forgotten to translate the 7200 rads (old unit) into the new Gray units. One Gray is equal to 100 rads.
As a general matter, whole body exposure to 5 Gray at once would lead to death in 14 days due to radiation poisoning. Such internet trivia can be distracting as I was worried when they told me I would indeed be getting 5 Gray a day during CyberKnife, but it is a precision machine, much more accurate than IMRT or TomoTherapy and all the radiation went into my neck and tongue. .
Bottom line, don't worry about the radiation dose now. When you are done, just ask them the total so you can put it into your signature line. It's just that we do try and be scrupulously accurate here with medical information so OCF members can rely upon it.
Think of it as a game of CAncer Trivia,
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: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | Angelia,
During tx I was put on a sleep aid, Ambien, and had horrible side effects from it. Mostly sleep walking but I also had a couple of episodes I am rather embarrassed about. One night I apparantly ran outside convinced there were ninjas on the roof and proceeded to hunt them. Another night I was stalking around the house and my wife had woken up and noticed I was not in bed. When she went looking for me I had snuck up behind her and put her in a choke hold.
Needless to say I stopped taking Ambien immediately, I would never intentionally harm a lady...and definetly never the love of my life. Drugs can make you do funny things, just make sure you have someone watching you and be very honest and open with your dr.
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.
| | | | | Joined: Nov 2006 Posts: 93 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Nov 2006 Posts: 93 | Two down............... good news.
Watching your progress.
Margaret
caregiver to husband
right tonsil stage 3
35 IMRT TX completed 1/5/2007
PET Scan clear 3/07
biopsy 9/07 clear
1st yr PET scan 12/18/07 clear
| | | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | | OP Patient Advocate (1000+ posts)
Joined: May 2009 Posts: 1,412 | Three down, and still feeling great. My lips are a little dry and I can already notice some mucous build up, but nothing too bad yet.
Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Great job girl!!! 3 down...you can do it
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: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2009 Posts: 618 | Angelia,
They will start falling faster as the days pass. Before you know it you'll be counting the other way "only X days to go"
Keep up that great attitude.
Kelly
Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
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