| | Joined: Sep 2013 Posts: 9 Member | OP  Member
Joined: Sep 2013 Posts: 9 | Tuesday is my husband's 6 week post-radiation check-up, and I'm so worried I can't even stand it. He has improved, but his throat is still very sore and he's still not eating enough, which makes me question how well he's really doing. I was worried during treatment of course, but at least we were doing something to address the problem. Now it's just waiting to see if it worked! I know he's worried too: the more worried he is, the more nocturnal he becomes -- he is almost a bat now. I would truly appreciate any advice on how to cope and help my husband to cope with the anxiety over the next few days. Thanks!!
Wife/Caregiver
6/5 ENT visit
6/11 FNA biopsy on lymph node
6/13 DX T2N2b stage 4 SCC on right tonsil metastasis to lymph nodes on right side
7/8 first chemo using Cetuximab
8/20 radiation oncologist initial visit
8/21 dental clearance
Cisplatin and Radiation starting Sept 9
2nd Cisplatin Oct 1
Radiation completed 10/24
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 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: 6 | Its always a bit scary around check up time. But as time goes on and your husband gets further out from treatment, it will get a little easier. Nutrition is key to recovery just like it was in getting thru treatments. He will need a minimum of 2500 calories (some need 3500) and 48 oz (some need more like 80 oz) of water every day for at least the next year. Adding high protein whey powder to beverages will also help to speed healing. Check it with the doc to make sure its ok for him. After everything your husband has gone thru his body is worn out and beat down, he needs the extra calories and protein to rebuild his body. Try focusing on things you have control over which is intake and that will help to keep your mind from worrying so much. Best wishes with the check up 
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 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 1 | Good luck with the doctor visit. The amount of weight lost is a gauge if he is not eating enough. Anything over 5% in a month of unintentional weight loss is considered cachexia, which can be self induced by anorexia, malnutrition, and other reasons, sometimes which there is no control of even with adequate nutrition. If the doctors think he is underweight, is not earring enough, there can be ways to increase the appetite, and gain weight, as Christine mentioned, and prescription medication, supplementation.
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
| | | | | Joined: Sep 2013 Posts: 9 Member | | OP Member
Joined: Sep 2013 Posts: 9 | Good news! Visit with the ENT oncologist went great! With the scope, he could not see any evidence of the tonsil tumor anymore, just an area of "radiation change" that is still healing. He assured us that still needing a pain med every day is not unusual 6 weeks out, and that my husband is doing "phenomenally well!" After feeling his lymph nodes and his whole mouth thoroughly, the doctor said that he didn't find anything that made him feel like a scan was needed right away (especially considering that we don't have insurance) Back in 6 weeks to re-examine him and discuss a scan then. Christine and Paul, I want to say thanks for your encouragement!
Wife/Caregiver
6/5 ENT visit
6/11 FNA biopsy on lymph node
6/13 DX T2N2b stage 4 SCC on right tonsil metastasis to lymph nodes on right side
7/8 first chemo using Cetuximab
8/20 radiation oncologist initial visit
8/21 dental clearance
Cisplatin and Radiation starting Sept 9
2nd Cisplatin Oct 1
Radiation completed 10/24
| | | | | 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 |
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 2007 Posts: 10,507 Likes: 6 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: 6 | Your very welcome!
Congrats on the wonderful check up! Im sure you both are so relieved.
The recovery road is a long one full of ups and downs. The worst is finally behind you.
Best wishes for the next appointment to go as great as this one did.
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 | | |
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