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Hi. All. Let me introduce myself. My name is Catherine and my older brother (40) was diagnosed with stage 3 oral cancer last fall. He opted to try chemo/radiation therapy before surgery as his oncologist suggested. He has been through it all in the last 6 months, and is now in the final week of radiation. He was supposed to do both chemo/rad together for these last 8 weeks but his blood work has been coming back with low platelets so they haven't done chemo in 3 weeks (just radiation). He was told in the beginning because of his young age and general health they were going to come at his as hard as they can and give him as much as his body could take to eradicate the cancer from his system. It is working, his lymph nodes aren't swollen anymore and the tumor has shrunk and not visable anymore (it was the size of golf ball). All of his doctors are optimistic that he wont need surgery and this seems to be working for him. Now here he is at the end of this and he is so sick he can barley get out of bed. He is using his PEG tube for nutrition but has still lost a ton of weight. He is a shadow of his former self. Do any of you have any experience with this and any suggestions of what I can do to help him? He told me he feels like he is waiting to die the pain is so bad. Just not sure how much more he could take. I think this is normal (they did tell him that they would take him to the "brink of death" and then bring him back.) Just looking for some support. Thanks - I appreciate you reading this.

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Welcome to OCF!

The biggest thing in how well your brother will do with his treatments is how good he is with his intake of nutrition and hydration. Without keeping up with these two things, he will struggle, maybe even end up hospitalized for malnutrition and dehydration. I cant stress how important this is!!!! Ive advised hundreds of patients to pay close attention to their intake and many times the patients who cant take in 48 oz of water and 2500 calories every single day end up in the hospital.

If his daily water intake isnt 48 oz then ask for his doctors to write a prescription for hydration. He MUST get this every single day, not think he can skimp one day and play catch up the next day. Catch up never happens and he will have a rough time due to being dehydrated.

As far as calories go, he must get a minimum of 2500 calories every single day. If he is losing weight and he is taking in 2500 calories, then he will need more to keep him sustained. I know it sounds like too much but its not. Right now his body is burning up calories like crazy and he is also trying to heal which further burns up calories. Since you say he lost a ton of weight then to me it sounds like if he made a change and took in 3500 calories every single day he would turn himself around ery quickly.

Poor guy probably feels horrible right now. But if he will listen and follow what I explained then he will very soon be feeling much better. Even if he would get hydrated at the hospital a couple times per week, he would feel much better. I always felt like a new person walking out after getting hydrated. I was in the same situation like your brother, I really thought at one point I was dying but I was malnourished and dehydrated.

Its all in the nutrition and hydration. He could be feeling better later today if he got hydrated and enough calories in. If he doesnt already have a pump for his PEG tube then ask for a prescription for one. It can run while he sleeps and help him to take in enough.

Please feel free to ask questions and we will help you get him thru this.

Good luck!!!!


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: Jul 2011
Posts: 945
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Hi, Cally
you are a good sister! Re: the doctor's statement - "(they did tell him that they would take him to the "brink of death" and then bring him back.) - I cannot imagine why they decided to phrase it in exactly that way. Our doctor's phrase - 'the limits of human endurance' was at least not as melodramtic.
As Christine points out, nutrition and hydration make a huge difference - if he is dehydrated it will make everything feel worse. Has he discussed his symptoms with his RO or ENT - or the oncology nurse? If they don't know what is going on, they won't know to help. Perhaps you will be able to advocate for him.
Maria


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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Thank you Chrstine and maria. I will pass on the info and hope he listens. I know he is trying to keep up with his food and hydration, but the severe nausea seems to always be there. I am getting sick of saying things like " your almost there" and "keep fighting" so I can imagine how he feels. He can't talk right now due to an infection in his mouth. I just wish I could actually do something for him. Can't wait to have this nightmare overwith and have my big strong brother back. This board has provided me with endless information and really has been a god send. Thank you again.

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Does your brother have a caregiver who is with him all the time? At some point the caregiver needs to get tough with the patient and tell them "this is how it is" speech and proceed to push the patient to do what they need to. I know when I was at my lowest point, I desperately needed someone to take charge. If your brother isnt one to listen then he will most likely not follow your directions with ways to help him turn this around. Someone must intervene and tell him how serious his situation is, he must get proper nutrition and hydration immediately. If I were in your shoes, I would tell him either you listen and take in more water and nutrition immediately today or you will talk to his nurses and doctor.

Im concerned that your brother is feeling so bad. To me, it sounds like he needs to get hydrated and a big boost to his caloric intake. If he is in pain then his pain meds need to be looked at and adjusted. Many have used the fentanyl patch. A good starter dose would be 50mg, it takes 24 hours to kick in. Its easy to use but the directions must be followed to the letter. Never cut, tear, bend or fold the patch and no long hot showers or baths. Do you go with your brother to his doctor appointments? If not maybe he would let you go and bring these things up to his doctor. If you do have access to his doctor, I would suggest calling and letting them know how badly your brother is doing right now. Ask for hydration in the chemo lab, it will make a big difference.

Im sorry if I sound harsh but Im very concerned about your brothers health. Right now is the hard part but it will get even harder very soon. The first 2 or 3 weeks after finishing treatments the radiation continues to work and will continue to make him feel awful. If he doesnt turn this around immediately he probably will end up hospitalized. I know as it happened to me but I didnt have a caregiver to take care of me. I suffered greatly and I hate to see anyone else who struggles. I hope your brother isnt too stubborn to accept your help.

Good luck.



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
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Do him and yourself a favor. Get some good protein powder (not one with "antioxidants" as I am sure there are some out there - antioxidants work against radiation). Just a straight up protein powder natural flavored since it's going down a tube and add it to his liquid nutrition. Make sure it is well mixed with NO lumps. It may make the formula a bit thicker just add some water to thin it out a bit. This will add more protein for healing and more calories. If you do this to each of his "Meals" then it should slow his weight loss. (choose a protein powder that has maximum calories and protein for minimum amount added. Some of them say 22 gms of protein etc... but if you read carefully it requires you to add two scoops. The one I use has I think 25 gms in one scoop. This will help with the lumpiness and thickness.


For his mouth there should be magic mouthwash prescribed to help with the pain if he is trying to drink or swallow (he should still try to do this as the swallowing reflex could be lost if he doesn't continue to use these muscles). Some formulas are drinkable this will allow a short term relief from the pain. This is only if he is drinking or eating something or having a moment of extreme pain as you can't use it all the time (this mouthwash is a topical medication with a short life span and will numb the area short term). Other pain meds can be asked for and prescribed for long term systemic relief of pain. Do not allow him to be in pain ask him to push his dr. for more medication as what he has isn't helping. Pain is a natural enemy to healing as it puts stress on an already stressed body. (this goes for lack of proper nutrition.)

Finally to help with hydration most hospitals suggest a baking soda, salt and water mixture to swish and spit. My hospital also recommended FLATTENED club soda (the fizz burns like a bugger!!) this is the same formula as the other but this you can drink, so it gives you hydration, and healing and since you can swallow it it helps your throat.

best of luck in these last few weeks.

PS it is worse the first few weeks after radiation finishes. as radiation is cumulative... sucks but forewarned is forearmed.

take care.





Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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What you can do to help your brother is speak up for him. Set up his formula for the PEG tube. When I was at my worst, I would skip feedings as it took too much energy to set it up. I would stay in bed and sleep instead of drinking and swallowing. Help him by keeping track of his medications. When a patient is that sick, they need someone to take charge and take care of them as they are unable to do it for themself.

PS... Try to encourage him to swallow sips of water several times per day.


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 2012
Posts: 1,275
Likes: 7
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Does your brother have access to a dietitian where he is being treated? If he is taking in enough formula and hydration, his weight should at least stabilize. Maybe he needs more formula or one with a higher protein content. A dietitian will be able to point him in the right direction.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
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No doubt about it, the last 2 weeks of rad and the next 2 post, SUCK! However, minutes turn to hour which turn to days. Getting to, and through the next feeding is the only game. Don't worry about anything else.

Sometimes we need a bitch. No skipping feeding, No skipping rads. Drink your water. Get his but in the car we are going to to the center. Get hydration if needed, its short term but instant releif.

I could not talk for three weeks, lost 25 lbs. I looked like death. 10 weeks later back at work. Life is getting better every week.


Hockey Dad
43, No smoke, Small BOT HPV+16
8/30/12 Biopsy found SCC in Lymph node (removed)
9/19 DX 4a T1N2aM0
10/1 TX 2x Cisplatin 35 IMRT 70 gry (Done 11/15)
PEG tube in 11/7. Out 1/4, Back at work 2/4/13
PET 2/13 Clear, 10/16 all Scopes Clear, 4/14 Chest X-ray Clear, 5/14 Abdominal ultrasound Clear, 8 yrs clean!!!
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WOW! You guys are amazing. Thank you all for taking the time to respond. Your comments are helpful and as most of you must know, its always a comfort to know your not the only family in the world dealing with this. He is living with my parents right now and they are both his primary caregivers. I live 20 miles away and stop in several times a week to see him and am in constant contact with the whole family. I shared some of this with my parents who agree that they must get tougher. He went today for bloodwork and they gave him a few bags of saline to hydrate him. And you were all right, he felt much much better. What is this "magic mouthwash" I have read about and someone mentioned here? I asked and my bro hasn't heard of it. He is on the morphine patch for the pain right now. Not working great but making it bearable for him. thanks again!!!!

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