| | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) |  "Above & Beyond" Member (500+ posts)
Joined: Jun 2009 Posts: 875 | Hi Callie:
I'm from Huntsville, AL and had Dr. Carroll, UAB for my doctor although I had already had surgery (tonsilectomy) in Huntsville when my tonsil cancer was found - went to UAB for consult on follow-up treatment - more surgery (to remove residual cancer they couldn't get with tonsilectomy) and radiation, or 7-weeks stronger radiation with 1/day week chemo in Huntsville. I chose no surgery at UAB, but had follow-up visits with Dr. Carroll. I hurt for you guys, especially having to wait for a month - also, I really encourage a second opinion. If at all possible, I would go to MD Anderson or Johns Hopkins. If that's not possible, the University of Pennsylvania. I will be praying for you and so glad you found the Forum because everyone has given you so much information and everyone really cares for you and hubby.
Hugs from julieann
Julieann Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer  | | | | | Joined: Jun 2012 Posts: 41 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Jun 2012 Posts: 41 | Thank you, I already talked to them and he is up for the first slot if there is a cancellation.
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 2012 Posts: 41 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Jun 2012 Posts: 41 | Tomorrow is Don's checkup. We'll hopefully get some questions answered and learn more about this surgery. I pray when they do the surgery they can save at least one of his vocal cords. Don told me that after this surgery, he hopes his neck doesn't feel like it's in a vice, like it has the last 7 months. I told him I hope not either, but that if he didn't start doing his neck and mouth exercises he probably wasn't going to feel much better. He never opens his mouth!! He'si starting to complain of both jaws hurting. I wonder if this is a sign of trismus? I'm worried about our kids as well. I know this affects them as well. Don use to play with them all the time now he can barely get off the couch, or pick the little one up. I am asking about his thyroid tomorrow as well. Thanks for listening
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: Aug 2011 Posts: 596 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2011 Posts: 596 | Best of luck to the both of you. I hope you got some hopeful news. I'll be thinking of you. Please keep us posted as you are able.
(((hugs)))
37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
| | | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2009 Posts: 875 | Good luck tomorrow with Don's checkup. Is it a UAB? Keep us posted and prayers headed your way.
julieann
Julieann Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer | | | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | | "OCF Kiwi Down Under" Patient Advocate (1000+ posts)
Joined: Mar 2011 Posts: 1,024 | Hey Callie,how's it going? Any decisions yet?
Thinking of you all, Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
| | | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2011 Posts: 805 | Me too. Update us when you can!!
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: Oct 2011 Posts: 225 "OCF Down Under" Gold Member (200+ posts) | | "OCF Down Under" Gold Member (200+ posts)
Joined: Oct 2011 Posts: 225 | Hi Callie, I've been thinking of you and Don a lot today, and hoping things are going well. Linda XX
Brother 49yo DX 22/6/11 Tonsil SCC HPV+ Stage IV T4N1(?)M0. Carbo/docetaxel (Taxotere)19/7, 11/8 (with E-tux), 1/9; E-tux 11/8, 25/8, 15/9, 30/9, 14/10, 28/10; IMRT X 35 (70gy tumour;63gy nodes;56gy gen area) 19/9-4/11/11. Clear PET scan 1/2/12. 1 and 2 year post treatment checks good.
| | | | | Joined: Jun 2012 Posts: 41 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Jun 2012 Posts: 41 | Update...
The checkup Wednesday went OK I guess. They told us he has a 20-25 % chance of cutting all the cancer out. The doctor also said he may have wound healing problems since they're cutting into radiated skin. Which is just one more thing to worry about! Also they said he probably will never even be able to have a voice because right now they are just focusing on taking care of the cancer. He had bloodwork done the same day and everything came back looking good even the thyroid. So i'm still at a lost for why he is having hot flashes. Any suggestions? The nurse called yesterday and they had a cancellation so Don's surgery is moved up to July 26th. That's one prayer answered!!! He hasn't been able to sleep much at all still. I asked for a sleeping pill and the doctor said probably not a good idea. I tried melatonin and it hasn't done anything for him. Thank you all for thinking of us. It means a lot!!
Take care,
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 2012 Posts: 41 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Jun 2012 Posts: 41 | Julieann, yes it is at UAB.
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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