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Joined: Jul 2012
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Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,267
Likes: 1
I can read your frustrations, and agree with ChristineB, and was in a very similar situation, even while being treated in the nursing home with adequate daily peg feedings by staff, my kidneys almost shut down due to infection, dehydration and almost went on dialysis, creatinine was 6.5, but still had good output, color. My family called 911 due to my feelings, weakness, although resident dr there said I was ok, and wound up in the hospital for 21 days, lost abilty to walk again for the 2nd time, and doctors in hospital again thought they were going to loose me. I have chronic kidney disease now, partly due to this, and creatinine is still high, but leveled off to a steady 2.4. Lack of nutrition and or Dehydration is serious business, and can be deadly.

Completing full treatment without interruption should be taken seriously as trying to cure this disease, not as prevention, and an unknown primary sometimes has a lesser prognosis than other primary cancers, but HPV helps increase the odds, but still can be deadly. The RO is correct that missing radiation each day amounts to 1 percent for each day, and this is due to the cancer having a chance to repopulate. Actually, the effectiveness of radiation decreases after the first 2-3 weeks, so they use different boosts, fractions, and other techniques to help this, so not missing any more is encouraged.


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






Bette #159509 12-28-2012 09:45 PM
Joined: Oct 2012
Posts: 118
Bette Offline OP
Senior Member (100+ posts)
OP Offline
Senior Member (100+ posts)

Joined: Oct 2012
Posts: 118
Hi everyone,

So I think I have Reggie's feeding and hydration under control now. He seems to be tolerating all very well now and am able to keep up with the standard 2500 + 48 oz. protocol.

I now have a new concern. Today he is 2 weeks out of the hospital and 23 days post op. I can't get him out of the recliner. He gets up in the morning around 6:30 am and moves to his recliner where he spends the majority of the day sleeping. I understand that Reg is 66 and had major heart surgery just 61/2 mos. ago., but I am trying very hard to get him to get up and move and walk and shower, etc. It's very frustrating that I can't.

2 yrs. ago I had a liver transplant and I made myself move and walk and get back to a normal routine even though it hurt and I didn't want to. I wish Reg had my fortitude. What am I to do????

Last edited by Bette; 12-28-2012 09:46 PM.

Bette/CG to husband Reggie 66

dx 1: SCC Soft Palate (12/06)
tx: chemo and rad

dx 2: SCC 6 cm tum rt. vocal chord (12/09)
tx: total laryngectomy with stoma, 2 nodes

dx 3: SCC 4 cm tum BOT (10/16/12)
Tx: partial gloss w/ mod deck dis 4 nodes incl. part. pharyngectomy
Bette #159526 12-29-2012 03:47 PM
Joined: Nov 2006
Posts: 2,671
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Nov 2006
Posts: 2,671
Bette - Maybe someone else will have an idea here. I haven't had your or Reggie's experience, but seems to me that a little exercise, starting slow would help. Has his doctor said anything about how soon he should be resuming some activities? And if it's ok with what he's been through? Maybe your excellent care has made him feel so much better, he just wants to relax and enjoy it a little before doing very much. How is Reggie's mood? Does he seem positive in how he feels? Maybe if you check with the Doctor and get his take on it, you might be able to pass this on to Reggie with something like "well, the doctor says . . . ." so that someone else is making some suggestions for him to consider. You really have done an amazing job with his hydration and feeding so pat yourself on the back for that!


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



Bette #159545 12-29-2012 11:12 PM
Joined: Mar 2011
Posts: 1,024
"OCF Kiwi Down Under"
Patient Advocate (1000+ posts)
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"OCF Kiwi Down Under"
Patient Advocate (1000+ posts)

Joined: Mar 2011
Posts: 1,024
Hi Bette, if you are anything like me you are probably thinking that his lack of activity is an ominous sign.
It's not. I think Reggie is just tired and needing encouragement and motivating. I would nag Kris to do more, and tell him that he would feel so much better for a bit of exercise. I would make Kris get in the car and then take him to the beach or park. Initially he could barely walk 100 metres. I just kept taking him and each time stretched the walk out further.
Of course all this made him so tired he needed a sleep when we returned. I think all this is part of the recovery. The body needs to sleep to heal. It also needs exercise to help both the muscles and the cardiovascular system get stronger.
Keep encouraging and trying to motivate him. Remember it is still early days. At Reggies next Drs visit bring up the subject of physical activity with him and the 3 of you can discuss this and the benefits this will give him .
it is still early days Bette. Maybe just a walk around the garden to start with .
Thinking of you both,
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!
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