| | Joined: Dec 2009 Posts: 2 Member | OP  Member
Joined: Dec 2009 Posts: 2 | I am new to this. Have tongue cancer. Originally diagnosed 3 years ago and had surgery and radiation. Came back in Jan 2009. Surgery March 2009. Radiation again May/June 2009. Just had biopsy and it is back again. Scared, confused. Had 3/4ths of tongue removed in March. Don't want to lose more. Headaches prevent sleep. No matter which way I lay or even if I lay back in recliner I can't sleep due to headache pain. Any suggestions for sleep and/or help for what is ahead? Thank you. | | | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: May 2009 Posts: 1,412 | You found the right place. I wish I could give you some suggestions, but I am just now starting my treatments and I do not know what is ahead. I do know that there is a lot of people on here that can help you out.
YOu may want to put some info about the type and stages in a signature so that we do not all have to ask. Just go to your profle under My Stuff and you will see where to put it.
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: 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 | Pat,
You really need to make sure your treating doctors are aware of your headaches.
Have you had a recent PET scan?
Where are you being treated?
There are many here that have lost a significant portion of their tongue but I don't remember headaches like you describe being discussed.
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: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Pat
Welcome to OCF. Are you being treated at a cancer center? Has your doc prescribed anything you could take for sleep? Alot of people here have taken Ambien. I would talk to your doc about your headaches and let them know your sleep problems. Hope you get some relief soon.
ChristineSCC 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  | | | | | Joined: Dec 2009 Posts: 2 Member | | OP Member
Joined: Dec 2009 Posts: 2 | Thank you. Yes, recent pet scan showed a problem and a biopsy proved it was cancer. Likely the cause of the headaches. Now facing surgery to remove most/all of my tongue. Very concerned. Anyone been through this? | | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Hi Pat and welcome to OCF. Not sleeping is never good..it's hard to deal with anything, especially cancer treatment on no sleep. Ask your doctor what they can do for you..I'm sure they will have something to help you. I'm sorry to hear you have had a recurrence after everything you have been through. You have found a great group of people 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: Aug 2009 Posts: 90 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Aug 2009 Posts: 90 | Pat, welcome but sorry you have to join this club. Where is the new growth? My husband before diagnosis had severe pain which
started in his ear and radiated up one side of his head, not a typical headache. The tumor was wrapped around one of the nerves on his tongue which radiated to the ear and head.
Are you going to a CCC?
keep us posted and sorry you have to go through this again.
Nancy
caregiver to spouse, 55 yrs, dx 9/09 SCC BOT, T2N0,nonsmoker, nondrinker, HPV 16+ ,Lt hemiglossectomy, lt modified radical neck dissection, lt tonsillectomy,PEG 11/08 removed 2/09, 30IMRT, CT neg 4/09, neg CT 10/09
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