| | 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 | Have they tested his TSH? The hot flashes may be due to thyroid damage. My thyroid crapped out appx 4 months post Tx and I was either very hot or very cold and I was especially tired.
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: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2011 Posts: 945 | Hi, Callie
I don't have a clue as to what's going on, but just wanted to send my best wishes. I hate to see such a young person go through this.
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
| | | | | Joined: Jun 2012 Posts: 41 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Jun 2012 Posts: 41 | Well Don's biopsy came back. He has cancer in the base of his tongue and voice box. The doctor said he has two options, first major surgery, remove rest of tongue, voicebox, and he'll have a permanent trach. That only giving him a 25 % chance of it not coming back. He'll never be able to speak again. The second option, radiation again, which would be even more brutal, chemo, combination of both or some clinical trials. Which would only be a 5 % chance of shrinking the tumor and it would possibly extend his life for a year. If he chose neither, he might have a year left, give or take. We have a six year old and a one year old. I don't know what to do. I've been crying all day, my face is raw from rubbing it! I can't eat or drink anything without getting sick! I don't think I've ever felt this much pain! please someone give me some advice or hope...
Thanks,
Callie
Callie, 24, cg to husband, Don, 43, smoker 20+ years, quit smoking 12/11! 3/09- spot on tongue, biopsy-. 3/10 biopsy-. 10/14/11 biopsy+. Surgery to remove front half of tongue and 32 lymph nodes (contained in one node).. 12/09/11. 6 weeks rad tx 2/1/12-3/20/12. Trach removed 4/12. Still using peg.
| | | | | 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 | Callie, I am VERY sorry!!!! Please run to the nearest major cancer center!!! That could make all the difference in the outcome. Cancer Centers
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: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2007 Posts: 939 | Callie, I did not want to sign off without answering you as there are not too many members on here tonight.
I am so very sorry about this latest news and I know you must be devastated...so worried and feel the weight of the world on your shoulders.
Christine gives great advice..make sure you are seen at a Comprehensive Cancer Center Head and Neck Clinic as soon as possible. They may have ideas how to attack this recurrence since they see this cancer every day.
I am sure lots of folks will answer you in the morning. Please know that all of us send hugs and strength to you right now.
Deb
Last edited by debandbill; 07-02-2012 07:16 PM.
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
| | | | | Joined: Jun 2012 Posts: 24 Member | | Member
Joined: Jun 2012 Posts: 24 | Callie-
There are no words. This kind of shock is numbing. I'll pray for your family. I'm so sorry you're going thru this. Ive been where you are. In 2007, 2009 and 2010. When you get to the point that you seek assistance from this forum, I hope that I am able to help you. In this instance, my signature would be that of 'caregiver'; in general, as the cancers are different. But I've been there and my heart breaks for you right now. I hope you have others in your life to help.
Hang on tight and ask for help.
-Wendy
Wendy 48@dx
Dx 2/11 stgIVSCC BOT
Dx 3/11 stgI breast (3rd of 4 sisters dx'd)
4/11 dbl mastectomy; no further tx reqd
5/11 PEG placemt;
5/11-7/11 chemox7;IMRTx35;
MRND 9/11
11/12 Dx:papilledema;hydrocephalus;psuedotumor.
11/12 LumbarPeritoneal Shunt
12/12 PEG Out; 100 lbs lost
All scans clear
| | | | | Joined: Jan 2011 Posts: 123 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jan 2011 Posts: 123 | Callie I have been there and totally feel your pain and sadness! Whatever is decided live each moment with eachother and your kids and make wonderful memories. This is true no matter how much time anyone has left. I am sending you strength to get through.
Jill..CG to Ken, age 43,mom of 1yr old girl.
DIAG:12/9/10 SCC BOT T4N0M0 HPV+
START:1/3/11 IMRT dailyX35 and 7 chemo
END:2/23/11 PEG IN:1/15/11 Out:4/26/11
CT/MRI 4/25/11-marked improvement CT 6/11 new spots
BX 6/23-cancer present
Total Glossectomy sched 7/20/11
7/19/11 Ken's suffering ended
| | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | I am so sorry, Callie for this latest news on the biopsy. Definitely get to a Comprehensive Cancer Center. Lots of people on here have had 2nd and 3rd opinions which have varied quite a bit from the original so it's well worth getting another doctor's take on it. Is there someone close by that can go with you to help in remembering what was said or recommended? Do you have family or a friend that can come over and just give you a hug? If you can share what's happening with someone, it can make it a little easier for you. Please stay close and let us know what is happening.
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2011 Posts: 805 | Hi Callie,
As many have said, I'm so sorry you are going through this. There really are no words that any of us can say that will help ease your fear or pain, but please know that we are here for you. We will remember your family in our nightly prayers. Please keep in touch as you can.
Again, so sorry. I am crying with you my sister.
Blessings,
Kathy
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
| | | | | Joined: Jun 2012 Posts: 41 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Jun 2012 Posts: 41 | He was treated at UAB comprehensive cancer center. I wish I could stop crying so I could think straight! His family is all from Pennsylvania so it's been hard to be close with them. They've supported us with constant prayer and text messages. My eyes burn from crying so much. I can't sleepeither! I just keep watching him breath! Every time I look at my little girl I start crying. I can't imagine her not getting to know her wonderful daddy. Have a voicemail saved from Don from a year ago today, he was telling me if loved me and stuff. I listen to it all the time. Thank you for all your replies.
Callie
Callie, 24, cg to husband, Don, 43, smoker 20+ years, quit smoking 12/11! 3/09- spot on tongue, biopsy-. 3/10 biopsy-. 10/14/11 biopsy+. Surgery to remove front half of tongue and 32 lymph nodes (contained in one node).. 12/09/11. 6 weeks rad tx 2/1/12-3/20/12. Trach removed 4/12. Still using peg.
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