| | Joined: May 2015 Posts: 18 Member | OP  Member
Joined: May 2015 Posts: 18 | My husband is doing amazing. He only has 7 radiation treatments left. Some mouth sores but manageable with meds. I've had him on constant mouth regime of various concoctions. No PEG tube and no weight loss. He's living on high calorie high protein Carnivor Mass shakes from GNC made with whole milk. Had second cisplatin dose this week with some mild nausea for 2 days. We keep waiting for it to get bad. Hope it doesn't. His second cisplatin had to be delayed a week due to low blood counts. I have a feeling they won't give the third dose. It couldn't be done until 1-2 weeks post rad. Will find out next week. Our next step is getting most of the 10 extracted teeth back. I haven't posted much but this site has been so helpful. Who ever posted about the cold neck cloth immediately post rads, it worked. I took it one step further and soaked the bandana in 99% drinkable cold aloe Vera. Sometimes with pure aloe Vera gel also. Hope this keeps on a positive track.
Kate, wife of husband with
May 2015, SSCA left lateral tongue, T2N2bM0 Stage 4 , Age 58
06/01/15, L hemiglossectomy, modified L radical neck, clear margins, 2 nodes positive, no extracapsular extension. Perineural invasion on lingual nerve in tongue.
Tx completed 8/28/15, IMRT and 2 high dose cisplatin.
12/15 negative PT scan
5/16 negative PT scan
2/16 fitted with partial denture
12/16 3mm area of exposed mandible identified. Started on pentoxifylline regime
3/17 completed 40 HBO dives.
| | | | | Joined: Jan 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,293 Likes: 1 | Fantastic report. He is very blessed to be one of the few who gets through without getting really beat up. Hang in there - I bet he shoots out the end of treatment with barely a scratch!
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | | 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 | Great to hear this report Kate. I'm sure a lot of this good ride is down to you. You sound like a marvellous Caregiver and you have things that you can control, under control.
Hope to hear more good news in the coming weeks.
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: Jul 2009 Posts: 1,409 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,409 | That's wonderful to read, Kate. He's on the home stretch now and you're clearly a huge part of getting him through it!
David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | Joined: May 2015 Posts: 18 Member | | OP Member
Joined: May 2015 Posts: 18 | Last radiation treatment today. He brought home his mask. He going to do something creative with it. I am hoping that in a few weeks he'll be eating real food again. The radiation oncology staff have been wonderful. He brought them flowers today, and they had him ring a celebration bell and there were hugs all around. I know it seems funny, but there is some anxiety about being cut loose and not seeing our "Rad "Pack" family every morning.
Last edited by Kate12; 08-28-2015 10:52 AM.
Kate, wife of husband with
May 2015, SSCA left lateral tongue, T2N2bM0 Stage 4 , Age 58
06/01/15, L hemiglossectomy, modified L radical neck, clear margins, 2 nodes positive, no extracapsular extension. Perineural invasion on lingual nerve in tongue.
Tx completed 8/28/15, IMRT and 2 high dose cisplatin.
12/15 negative PT scan
5/16 negative PT scan
2/16 fitted with partial denture
12/16 3mm area of exposed mandible identified. Started on pentoxifylline regime
3/17 completed 40 HBO dives.
| | | | | 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 | Congrats on the the end of treatments!!!! Let the healing begin 
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 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,293 Likes: 1 | Congrats on completing treatment and starting the recovery period. I had the same feeling once treatment ended. After months of so many visits to the hospital and doctor appointments and calls and ... Then the day after you finish up treatment, it feels like it you fell off the face of the earth.
It is now your time to rest and heal up. It is going to take some time and everyone has a unique experience but generally do expect it to be pretty rough for about a month. Good luck and post here with any questions.
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 4 | Congratulation on completing treatment! When asked if I wanted my mask, I turned them down and just punched it, except my last mask with Proton Therapy I decided to keep it, and hopefully decorate. Well, that was 1.5 years ago, and finally just about finishing making it into Spiderman, and hate it now just as much as I did before since it wasn't as easy as I thought. It looks good though. There is an organization, and is how I learned, that make radiation masks into art called, "Courage Unmasked." http://courageunmasked.org/photo-gallery/Good luck
10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs
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