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Joined: Oct 2011
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Hi Debbie, Pat sounds so much like my brother after he finished radiation, in that every day was different.Would he feel good? Would he feel bad?/Scared and depressed or positive?/Lots of mucous or not so much/chills or sweats/able to keep food down or not?

Yes, it is a huge roller coaster.It shouldn't be too much of a surprise. I think the radiation treatment, though a godsend, must be awful to go through and then for those weeks after it's finished you're never allowed to fell all is OK for too long !! But Pat shuld take comfort in the fact that nothing you have mentioned sounds unexpected or unusual to other members as a whole, although some may not have had exactly the same side-effects as Pat.

Pat is also hugely advantaged by having a great carer. I hope you've been able to enjoy your holidays, and been able to let go of the worry for a while. Best wishes to you both, Linda


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.
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Patdeb Offline OP
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Linda, it is interesting that you mentioned depression. I wasn't prepared for that one since Pat is always so upbeat. For the past week he has been very depressed and has insomnia x 3 days and getting minimal sleep. He has quit all pain meds at once which I am sure is affecting this, he was not on them for a long period of time and now that he is off, and has minimal pain, going back on is just not an option. Yesterday he did get out to GNC and bought some weight gain protein drink, reinstated his membership at the gym and spent a lot of time with me at work. What do I do for the depression and any ideas on what to do for the insomnia? We are going to the beach tomorrow for lunch and some sun time so I am hoping that helps him.


Debbie, caregiver to Pat my loving husband of 32 years. T1
N2a M0 squamous cell carcinoma of the left base of tongue. Started on concurrent cisplatin and radiation, first
cycle was 09/26/2011, 35 rad, 2 chemo. Last Rad 11-11-11 at 1!!!!
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Depression is quite common post Tx as the "now what" kicks in. Just like everything else, for some it's barely a matter and some require Tx. Have him see a trained specialist with experience in cancer related depression if his condition warrants it.


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.
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Hi, Debbie
My husband went off the pain meds cold turkey: this is not easy to do, and may have contributed to the insomnia as well. Using a humidifier helped with the dry mouth that help with sleeping.

It sounds like he is working on helping himself to get better with the protein drinks, gym time and spending time with you. As David mentioned, seeing a trained specialist is the routine to go if that little voice in the back of your head tells you to.

Hope the your day at the beach was pleasant!


CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
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Patdeb Offline OP
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What a great day, we made the beach, ate ribs and enjoyed the sunshine. It was a very tiring day and after a short walk on the beach it was time to go. Chinese food, daughter and both grand daughters tonight capped a wonderful day. Last night Pat took some OTC sleeping pills and actually got about 8 uninterrupted hours of sleep. We are actually planning a family get together next week for football Sunday if all goes well. Still very very emotional, but a solid rainbow day!!!


Debbie, caregiver to Pat my loving husband of 32 years. T1
N2a M0 squamous cell carcinoma of the left base of tongue. Started on concurrent cisplatin and radiation, first
cycle was 09/26/2011, 35 rad, 2 chemo. Last Rad 11-11-11 at 1!!!!
Joined: Oct 2011
Posts: 805
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AWESOME!!!!
Kev has been down now. Wondering if part of is his scope tomorrow. He says it doesn't bother him, but I'm nervous so he has to be. Who knows. Could be just a down time. So goes the coaster.
So, so glad Pat got to eat his RIBS!!!!


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
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Patdeb Offline OP
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How did the scope go? Pat is wondering now how long the sore throat will continue. He does pretty good for the most part, but, towards the evening and sometimes during the day it starts to tighten up and still no night time snacking. His weight was going down to a concerning amount but Sundays trip turned on a switch and he is looking better and healthier. Still plagued by a sore on his tongue but we went to the nurse practitioner yesterday for regular check up's and she said it does not appear to be infected. I know everyone is different but just wanting to know about the throat soreness length of time.


Debbie, caregiver to Pat my loving husband of 32 years. T1
N2a M0 squamous cell carcinoma of the left base of tongue. Started on concurrent cisplatin and radiation, first
cycle was 09/26/2011, 35 rad, 2 chemo. Last Rad 11-11-11 at 1!!!!
Joined: Oct 2011
Posts: 805
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So ironic Deb. Kevin is going through the exact same thing. Since we are a week ahead I will tell you that his tongue has healed a ton since a week ago Monday when we went to have them look at it. They put him on Diflucan for 10 days and it has done wonders. They didn't think it was infected, but Kev and I think it was a yeast thing or something because it healed so fast after starting the meds.
Kev's throat still hurts though. He is having the same trouble Pat is with food. It's just really hit or miss. He has now lost 42 pounds. That was as of Tuesday, and I know he's lost more. I can see it! Luckily he was about 60 lbs overweight, so he looks great. If only it wasn't muscle he was losing. I know his strength is compromised a bit. It will be ok though.
His scope went well and there was NO sign of cancer. They will do it again in 4 months. CT on the 20th and PET in February.
Our bad news is that my pap came back abnormal and positive for HPV. So next Wednesday I am having a colposcopy and a leep procedure done in the or. It is an outpatient thing. Praying it comes back ok. The next step will be a hysterectomy. I think I'm ok with that as long as it gets it all! Trying not to worry!
One of our fellow cancer buddies died this week too. He was very sick so it's a blessing, but it just made me angry that the cancer won. It's personal now. His name was Kevin too. Sweet man with a sweet wife. Went to the service today and she looked tired, but not as tired as she has looked the last 2 months.
Here's hoping for a good weekend for both of us. Meeting the inlaws at Olive Garden Sunday after church. Hopefully Kev will be able to eat. Fettucine Alfredo usually goes down pretty well. See ya!!


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: Nov 2011
Posts: 53
Patdeb Offline OP
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That is good to know, I don't understand why they didn't put him on antibiotics so will push the issue if it's not better by next week. Our latest mountain to climb is insomnia. As I posted before he took an OTC sleeping pill last week and got a full 8 hours!! All week this week he sleeps a few hours, wakes up a few hours, dozes but is not getting a full nights rest. Last night he tried Excedrin pm as well as two cups of sleepy time tea and it didn't work. I know some of it is psychological because he goes to bed saying "I hope I can sleep tonight". I hope this is one of those this too shall pass moments. I have to go out of town for a week on a business trip and he is coming with so it will be a week of weight room, exercise, pool, whirlpool and eating out for most of our meals. I think this will be very therapeutic for him. Thank you Kathy for all of your help. If anyone has an insomnia cure, I am open to any and all ideas!


Debbie, caregiver to Pat my loving husband of 32 years. T1
N2a M0 squamous cell carcinoma of the left base of tongue. Started on concurrent cisplatin and radiation, first
cycle was 09/26/2011, 35 rad, 2 chemo. Last Rad 11-11-11 at 1!!!!
Joined: Nov 2011
Posts: 53
Patdeb Offline OP
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Sorry Kathy, I tried to figure our the private message thing but it didn't work..........or user error. Either way, I will be thinking of you on Wednesday and praying for great results! I am so sorry about your friend, no words can be right during a time like this except to say. I am a two time survivor myself, there are a lot of lost lives but fortunately a lot of survivor stories too.


Debbie, caregiver to Pat my loving husband of 32 years. T1
N2a M0 squamous cell carcinoma of the left base of tongue. Started on concurrent cisplatin and radiation, first
cycle was 09/26/2011, 35 rad, 2 chemo. Last Rad 11-11-11 at 1!!!!
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