| | Joined: Nov 2010 Posts: 128 Senior Member (100+ posts) | OP  Senior Member (100+ posts)
Joined: Nov 2010 Posts: 128 | hello again, well dad had the big surgery on december 7.. everything is looking great.. swelling went down a great deal and he is really looking great! the past 2 weeks he has had a headache which of course can be from so many different things, but as you all know we HATE any pain especially in that area..he is off the majority of pain meds, thank God and will take a morphine maybe once a day for the headache.. the last few days he really has no energy, and it was even hard for him to get himself in and out of the bath, his arms were very weak and hurt him.. has anyone experienced any of this? i know he has such a long recovery, he is my hero.. any input would be great! thank you all again and God bless!
nicki
Dad-55 yrs..2/2010-DX/March 2010-Induction Chemo/35Rads 7weeks concurrent with chemo once every 3weeks/6/2010-Treatments completed-October 2010-Recurrence/December 2010-salvage surgery/clear Margins/July 2011-recurrence/weekly Erbitux treatments-5/30/12, last erbitux..
Painfree and rested 6/19/12
| | | | | 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 | To me it sounds like your father is doing excellent!!!! Make sure you let the doc know about the headaches and weakness. Anything out of the ordinary let the doc know about. Morphine is pretty strong for a headache, might that be what is causing it? Maybe try taking tylenol for it instead and see if that works.
He really is doing great, I was stuck in the hospital for 2 months after my mandibulectomy. Best wishes for a speedy recovery.
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: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | | "OCF Down Under" Patient Advocate (1000+ posts)
Joined: Aug 2007 Posts: 1,301 | Hi Nicki, Nice to see that you are such a concerned, aware and loving daughter to your father. You are right in that he will take some time to recover but he is still young. I can say that because I was around the same age going through this  Sadly there is no Nicki in my life! As Christine says he is doing great and you also have my best wishes for a quick recovery. Keep posting with updates and questions. Gabriele
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | | Joined: Nov 2010 Posts: 128 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Nov 2010 Posts: 128 | Gabe and Christine,
thank you so much for your responses! we did tell the ENT about the headaches, and he said it can be from so many different things at this point.. he was getting the headaches too before the morphine pills.. he takes a 5mg once a day.. he looks amazing but its those dang headaches that concern me.. the ENT said come see him once a month, unless there are any problems or concerns.. he lost about 3/4 of his tongue, he has tried to talk holding finger over the trach and i honestly cannot believe that i could actually understand him.. such a long road ahead, but i will take it! best of luck to the both of you and i will continue to keep you posted.. and im here for you for any support as well.. i couldnt imagine what each of you has gone through personally.. God bless and in my prayers always..
nicki..
p.s. are there any vitamins you would suggest him taking via g-tube? he has a bloodclot in leg, so we have to stay away from anything with vitamin k.. ?
Dad-55 yrs..2/2010-DX/March 2010-Induction Chemo/35Rads 7weeks concurrent with chemo once every 3weeks/6/2010-Treatments completed-October 2010-Recurrence/December 2010-salvage surgery/clear Margins/July 2011-recurrence/weekly Erbitux treatments-5/30/12, last erbitux..
Painfree and rested 6/19/12
| | | | | 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 | I would suggest adding a scoop of high protein powder to his formula. Does he use a feeding pump? If so add an extra can of water and a scoop of the high protein powder. That will help him with healing. You can buy it at walmart or online thru the OCF's Amazon link.
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: Aug 2010 Posts: 72 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Aug 2010 Posts: 72 | Hi Nicki,
The words blood clot and headache are scary when used together. It is NOT a likely scenario, but both the clot and the treatment can cause stroke. The ENT does know about it? My husband was diagnosed with a blood clot in the leg and because his surgery was in a different town, the ENTs would not have known had I not sent them the reports from the emergency room. Tim�s clotting time went up and down for a couple of months. At one point he would be given vitamin K because the blood was too thin and at others heparin was added because the blood was too thick.
I hope it�s just stress or something simple. Stroke is unlikely, but it�s something to be aware of.
Susan, CG to husband, diagnosed April 2010, age 56, non-smoker, no HPV
Mandibulectomy on left side May 2010 followed by 30 radiation, 3 cisplatin treatments.
| | | | | Joined: Nov 2010 Posts: 128 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Nov 2010 Posts: 128 | hi thank you for the info about the protein powder Christine..
yes the ENT knows about the bloodclot.. my dad works with a team of doctors at Rush hospital here in Chicago.. he got the clot shortly after he did his chemo/rads.. he is currently on cumadin, and a nurse comes out once a week to take blood to check his levels..they found his bloodclot in July and did another doppler while he was in the hospital for this surgery in December.. they said clot was still there but better because there was actually blood flow through it.. but he is closely monitored for that and all the doctors are kept in the "loop" of things.. thank you both again..
Dad-55 yrs..2/2010-DX/March 2010-Induction Chemo/35Rads 7weeks concurrent with chemo once every 3weeks/6/2010-Treatments completed-October 2010-Recurrence/December 2010-salvage surgery/clear Margins/July 2011-recurrence/weekly Erbitux treatments-5/30/12, last erbitux..
Painfree and rested 6/19/12
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