Previous Thread
Next Thread
Print Thread
#188053 01-30-2015 08:33 PM
Joined: Oct 2011
Posts: 805
KP5 Offline OP
"Above & Beyond" Member (500+ posts)
OP Offline
"Above & Beyond" Member (500+ posts)

Joined: Oct 2011
Posts: 805
Hi Guys,
This is Kathy. I know I haven't been around on a regular basis in a long time. We have moved to Maine and had all sorts of changes.
I am writing to ask your opinion on how Kevin is feeling. Not looking for medical advice, I know the routine. I'm looking for personal advice from experience. He is really struggling with exhaustion. Still working in Alaska, so it hasn't shut him down, but when he is home he naps every day for at least 2 hours, sometimes more. They have put him on Synthroid for his thyroid, but it doesn't seem to be helping much.
Personally I want him to have another PET, but our radiation oncologist told him last April that he should just pretend he didn't have cancer and move on. I was a little shocked because it had not even been 3 years yet. Now Kevin doesn't want to even entertain anymore testing. I guess I am venting as well as looking for advice/ experience.
Thank you.


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: Mar 2011
Posts: 1,024
"OCF Kiwi Down Under"
Patient Advocate (1000+ posts)
Offline
"OCF Kiwi Down Under"
Patient Advocate (1000+ posts)

Joined: Mar 2011
Posts: 1,024
Hi Kathy, I hear your concerns . If I remember rightly Kevin works long 12 hour shifts ? I'm not really suprised that he is so tired when he comes home. It's a good opportunity to catch up on sleep and rest and recover , ready for the next stint. I'm guessing that he has had his thyroid functions measured since starting on thyroid replacements?
Kris is nearly 3 years post surgery and does still have a catch up nap about 3 times a week. As part of his continued surveillance I do check his blood work including a Full Blood Count, Thyroid Function and Biochem at least 3 monthly. I guess you have already had it all checked?
Here in New Zealand, no one gets regular scans. Kris has not had any scans since preop. He has 3 monthly checks and scopes with his ENT which in my opinion, is a great checkout. Remember most cancers are found by the patient , not scans. Also there has been research which shows no improved outcomes from regular scanning versus no scanning.
Keeping you and Kevin both in my thoughts,
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: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
Hi Kathy!

Fatigue can be one of the stage after effects that happens to many patients. I know you didnt want to go thru more tests but a full blood panel should be done every 6 months. Specifically checking his thyroid and testosterone levels. He may be anemic which will make him tired as well.

Best wishes to you both.


Christine
SCC 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 smile
Joined: Oct 2011
Posts: 805
KP5 Offline OP
"Above & Beyond" Member (500+ posts)
OP Offline
"Above & Beyond" Member (500+ posts)

Joined: Oct 2011
Posts: 805
Thanks girls. He has his blood checked every 6 months. They have increased the thyroid meds two or three times already. I will let it play out a few more months and see how it goes, then maybe try to be a little insistent on more blood work at the very least.
I know he is beat when he gets home. That time in Alaska is hard on him. Yes, Tammy, 12 hour days 21 days in a row. He has done it for 7 years, but, since tx, it's harder, which is to be expected I guess. I think I was just concerned because he sounded so tired last night. He was very frustrated too.
Thanks again for the encouragement.
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

Moderated by  Eva Grayzel 

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,168
Posts196,924
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5