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#191945 03-05-2016 10:06 AM
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Coming up on 4 mos post rat, modified radical neck dissection and radical tonsillectomy. T1N1 was the final call. I did really well, in spite of having peg I ate everyday, taste is pretty much back, a little weirdness but no concern. I had IMRT of both sides , 6600 to tonsil bed, 6000 to affected side and 5000 to opposite side with left side parotid and sumbmandibular glands spared. I never got burned and had very few mouth sores, tonsillectomy was worse. I am reaching out because at four months I'm feeling like recovery has stalled, very low saliva most of the time especially when trying to exercise, I love riding a bike it was usually all I did, 20mi a day everyday. I am catching these little bugs often and they knock me down for 1 or 2 days. I still experience some fatigue but nowhere near a month ago. I read both of your posts and am encouraged it will not stay this way forever. Any experience you can share regarding recovery would be so welcome.
Thanks

Mgb #191947 03-05-2016 10:45 AM
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Welcome to OCF!

At 4 months post rads you are still in the recovery phase. Most patients are doing fairly well and have made significant progress at 4-6 month post rads. But, recovery is a looonnnggggg process! Patients will continue making small improvements thru about the 2 year mark. These improvements are mostly in sense of taste and dry mouth.

Being 4 months post rads, your resistance is still low. Many patients have low white counts for many months post rads, moreso with patients who had chemo with their rads.

Until at the very least the first year post rads your body is working overtime trying to rebuild itself. This means you have more calories being burned up at a faster rate. For at least the first year post rads you should have a diet of increased calories of at least 2500 and water intake of 48-64 oz daily. Check with your doc about a diet higher in protein or adding high protein whey powder to help speed your healing.

Hang in there!!! The very worst of this is behind you. I know how frustrating the long slow recovery phase can be. After going thru so much, none of us can get better fast enough. Until you hit the 2 year mark you still will see improvements, probably smaller changes but still you will continue to bounce back.


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
Mgb #191951 03-05-2016 05:53 PM
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Sounds like you're doing well at 4 months!

There are many causes of dry mouth, including from radiation/chemo we're used to hearing about, but other causes can be from dehydration, medications, illness, exercise, etc. I'm not sure of your liquid intake, and varying needs, which can include the elevation you're at, temperature, activity level. Some medications can also cause dry mouth, and illnesses like diabetes, kidney malfunction, hypothyroidism are some too, even exercising, and mainly breathing through your mouth, can cause dry mouth, as well as sleeping with your mouth open if that is happening. which can be some things to look into on your own, with your medical team.

I always thought that too much exercise lowered your immune system, and moderate exercise helped to protect it, and probably read such many years ago, but it never changed my habits, and dealt with the frequent colds back in the day. Adequate sleep, rest, proper nutrition, avoiding/protecting against illness, can also help your immune system.

I hope this helps.


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






Mgb #191980 03-12-2016 01:52 PM
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Hi guys
First scan is clear 😄
Very grateful today

Mgb #191981 03-12-2016 04:47 PM
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Congratulations!


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






Mgb #191982 03-12-2016 07:44 PM
Joined: Jun 2007
Posts: 10,507
Likes: 7
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Administrator, Director of Patient Support Services
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Posts: 10,507
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Thats great news!!! Congrats smile

Best wishes with your continued recovery!!!


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
Mgb #191984 03-13-2016 09:19 AM
Joined: Feb 2016
Posts: 7
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Posts: 7
Mgb HI and Congratulations smile I hope I can say same next week. I went back to work 6 weeks after treatment and now at 3 months I also feel stalled out. Hoping to start a little exercise with the better weather. I'm just really really tired and having alot of little aches and pains which I ignore most of the time. I'm DONE with cancer I just dont know its done with me.


Karen
Nurse/49 year old non-smoker/rare casual drinker
2008 Papillary Thyroid Ca with RAI and Thyroidectomy
9/2015 L Pyriform Sinus SCC HPV+ mets to two lymph nodes
T3, N2b, M0 = Stage IVa
10/14/15 Tonsillectomy and Panendoscopy
10/27/15 RADS 37 tx and weekly Cisplatin Chemo
03/15/16 3 month PET scan scheduled
Mgb #191986 03-13-2016 01:43 PM
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Posts: 5
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Thanks Karen
Your gonna be fine - I just know it


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