| | Joined: Dec 2006 Posts: 147 Senior Member (100+ posts) | OP  Senior Member (100+ posts)
Joined: Dec 2006 Posts: 147 | Went to the Dr. Monday for PET results - not good, significant growth in the bone lesions, more in the chest area. Dr. stopped all chemo treatment. there is a pill that he can take that is for lung cancer that doesn't have much data as to how well it does and costs thousands of dollars; most insurance doesn't cover it. There certainly isn't evidence of it helping oral cancer....since our insurance will cover it he is trying it out....we'll go back in a month. Jim pressed his Dr. very hard to tell him how much time he's looking at and she wouldn't do it. He keeps growing weaker and weaker. I'm shell shocked at this point.....Paula
Caregiver to Husband 50 yrs.young-non smoker/non-drinker; Stage IV - all treatments stopped August 2009
Lost the battle November 23, 2010
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Paula, I reallyhave no words to make any of this better . I have the 2 of you in my thoughts and prayers and wish nothing but the best to you. I pray that Jim doesn't suffer long or too much. Good luck to both of you in the coming weeks.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | 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 | Paula,
So so sorry. I hope the pill works wonders.
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: Apr 2009 Posts: 128 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Apr 2009 Posts: 128 | Paula,
I will keep you both in my prayers.
WFC
Age 57 at dx on 3/30/2009 by Dentist
SCC of R tonsil S2 Poorly Differentiated - 2.5 cm
Rad - IMRT 5x a wk for 8 wks starting 5/4/2009
No Chemo
Last Rad treatment was 6/26/2009.
Two years down as of 3/30/2011!
God bless all affected by this monster called cancer!
| | | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | Hey my dear friend
you have had so much longer than you expected a year ago and this must be a terrible shock.If you need to back to our pm,s then feel free you know i am here.
love always
liz
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: May 2009 Posts: 1,412 | Paula,
I am so sorry that you have to go through this. I will be praying for your husband and you as you walk through this together.
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: Jun 2007 Posts: 10,507 Likes: 6 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: 6 | Paula, I am so sorry to hear of your husbands recurrance. I will keep both of you in my prayers.
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: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2008 Posts: 706 | Paula- I'm so sorry about the bad results. Let me know how I can help you-I've been down this road.
Sue
cg to husband, 48 Stage 1V head and neck SCC. First surgery 9/07. Radiation and several rounds of chemo followed. Mets to chest and lungs. "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Went home to God on February 22, 2009.
| | | | | Joined: Aug 2008 Posts: 100 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Aug 2008 Posts: 100 | Paula, so sorry to here the results and we will keep you and your husband in our thoughts and prayers.
I don't mean to lead this in a different direction but PET scan results have been on my mind a lot lately. The doctors that we see rely heavily on the PET/CT results. From what I have read here on different posts, I think some people question the reliability of the PET/CT. I know in my wife's case all the PETs have gone in the same direction with increases in size and activity until this week showing some stability. My question is, before agreeing to stop the chemo from PET results, is there some other way we should be asking to get a second opinion/test on the best course of action?
Again, I don't mean to question what your doctor has suggested, it is just that I have always believed in the PET results and have just started now, a year into treatment to question the validity.
Our best wishes to your family.
Tom-CG to wife, Pam 46@dx
Stage IV Tongue Cancer T2N2C
Dx 6/08, Surgery 7/08, 3 nodes positive
9/08 33IMRT/7Carbo/Taxol
4/09 node biopsy positive, mets to lungs/stomach
5/09 Cisplatin or Cis/Alimta study
6/09 Cis/Taxotere
9/09 Taxotere
1/10 Xeloda
3/10 Cetuximab weekly
6/29/10 lost battle
| | | | | Joined: May 2007 Posts: 104 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2007 Posts: 104 | Paula, I understand your shell shock...... Please, know you and yours are in my thoughts and prayers. There are no words to comfort..... This has been a long, valley/peak journey.
Jordan's Mom. Linda
She fought the fight with courage, hope and dedication. Ten months of battling tongue cancer. They thought they had it after each treatment. Not to be. Christa died at 32 y/o in Nov. '07.
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