| | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) |  "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | There is definately more going on than what is being seen. I am surprised they sent him home. It could very well be the pressure on the nerve. Hopefully you have some answers or relief soon... Hugs!
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: Jun 2012 Posts: 41 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Jun 2012 Posts: 41 | Oh I'm sorry, no they didn't send us home. Eric, I asked the doctor about steroids and he said he wouldfeel uncomfortable giving him steroids so close to his surgery. Some good news, his eeg showed no signs of seizures and his brain CT showed no tumor or mass. These tests were from the other hospital before he was transferred. He is getting his trach changed to one with a cuff and he will have a CT of just his throat in the morning if he can tolerate to lay flat. Thank you for your replies. This stuff is all so scary!!
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 2009 Posts: 440 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2009 Posts: 440 | Wow Callie! I'm so sorry to be reading all of this. I pray things start looking better and your hubby can get surgery and begin to recover. Try to get some rest and take care of yourself as well.
Dx 3/27/09 @ 28 years old with High Grade MEC T4N2M0
Elizabeth, 33, mother of 3 girls (4,7, &8yrs old)
3 rds of chemo(Carbo/Taxol)
Rt Mandibulectomy, rt fibular flap,& rt ND with trach, picc,& g-tube.
30 rds of rads with weekly cisplatin
SCANS ALL CLEAR!
OCF Regional Coordinator of San Antonio Walk
| | | | | Joined: Aug 2011 Posts: 596 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2011 Posts: 596 | Dear, Callie.
I am so sorry for what you and Don have been going through. It must have been terrifying to see him like that. I have to commend you for being calm and level-headed during these emergent situations. For such a young woman, you are far more mature than your years. Don is lucky to have you by his side.
I sincerely hope that there is no tumour invasion into the vagus nerve. Hopefully, it's just the swelling causing these episodes and nothing that can't be taken care of conservatively and certainly nothing that would prevent him having surgery later in the week. I am also surprised they didn't give him steroids in order to bring down the edema. I'm sure they have a good reason, as we are not doctors.
It may be worthwhile asking (sooner rather than later) if there is a physical therapist on staff that is qualified to treat lymphoedema. Perhaps that might help the swelling enough to make a difference in the way he feels. I'm not sure if there are contraindications for this, but it would be easy for the doctor to call the rehabilitation services department in the hospital to ask for someone who specializes in lymphoedema.
I hope you are hanging in there. Is Don's family still down with you to help out? I hope so. Please keep us posted as you are able.
With great care,
Kerri
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: 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 | I am sure they have but did they discuss the possibility of a partially blocked carotid artery or a blocked Subclavian artery which both can lead to a loss of blood to the brain. Both also can lead to a reverse flow of blood to the lower extremities resulting in a pooling of blood in the neck area.
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 2012 Posts: 41 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Jun 2012 Posts: 41 | Everyone please say a prayer that Don's surgery goes well and he doesn't have any problems with his heart or blood pressure dropping during surgery! Thank you all so much in advance!
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: Oct 2011 Posts: 225 "OCF Down Under" Gold Member (200+ posts) | | "OCF Down Under" Gold Member (200+ posts)
Joined: Oct 2011 Posts: 225 | Absolutely, Callie. Linda xxx
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: May 2012 Posts: 114 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2012 Posts: 114 | Thinking of and praying for you and Don as he goes into surgery. Hang in there!
Amy CG to mom Janet - diag w/ early SCC 8/11-surg w/ rad neck dissect & graft from arm/thigh 9/11-evid in nodes tx 6 wks rads (5/wk) w/cistplatin (1/wk for 6 wks) began 11/11-wk or 2 break 12/11 due to severe side effects-done 1/12- 3/23/12 mets to liver lung bone-hospice 4/7/12-lost fight 4/22/12
| | | | | Joined: Aug 2011 Posts: 596 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2011 Posts: 596 | Thinking of you, Don, and the kids! Hugs to you!
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 2012 Posts: 41 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Jun 2012 Posts: 41 | Don's surgery wasn't an option his swelling was all due to the cancer. They said his best benefit would be palliative care at this point. That he has probably 6 months but judging by how things went this week probably not that long. I just can't believe it turned so bad so quick. Thank you all for your thoughts and prayers.
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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