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"OCF Canuck"
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"OCF Canuck"
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Best of luck with the radiation etc. saying prayers and keeping fingers crossed for you and your family that all goes well.


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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My heart goes out to you KLR, I know firsthand how hard it is to see a parent face cancer. Many, many people right here on this forum have endured exactly the treatment your Dad is undertaking, made it through the hard spots, and gone on to resume full and happy lives. Your Dad is going to make it too, with your help.

(((HUGS)))

Mama


53
T3N2aM0 HPV+
5/26/13 discovered painless superball-sized lymph node in neck
6/26/13 DX SCC R palatine tonsil
7/16/13 TORS tonsillectomy & selective ND, mets to 2 nodes
9/3/13 Cisplatin and rads begin, tolerated 1.5 of 3 planned chemo doses
10/16/13 Treatment ends
Dec 13 Ulcer appears at surgery site
Jan 17 Biopsy -- no cancer!
Feb 17 CT/PET Scan lights up tonsil bed & nasal cavity, docs say probably inflammation, don't panic, rescan when ulcer subsides
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Pay attention to any change in his hearing. Even something small could be potentially a problem. Cisplatin is known to cause high frequency hearing loss that is permanent. Ask him to let you know if he hears buzzing or anything unusual.

With cisplatin, make certain he is drinking lots of water to flush out the poison from his kidneys. Every single day a minimum of 48 oz is necessary as is at least 2500 calories. Around chemo time, it doesnt hurt to up the water intake even a little higher to say 60 oz a day. Better to drink another 12 oz than risk having permanent kidney damage.

Stick with us and we will help you get thru this!!!!

Best wishes!!!


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: Sep 2013
Posts: 11
klr Offline OP
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Thank you Christine,Mama, Cheryl, etc. He made it through last night and all of today with no N/V/D. They brought him in for an IV bolus infusion...1 liter this am before he had his second rads trmt. When does the N/V/D start from the Cisplatin? It is usually right away or a couple of days post infusion?

They are bringing him in again tmrw for another IV Fluid Bolus and again on Friday.So it seems like they are on top of his fluid intake. I'm sure next week will be a little harder to drink, and then so will the next week, and so on and so forth. But that's what I'm here for.....to push him. I don't care if he hates me by time we are all done with this. At what point into Rads trmt did it begin to get difficult to swallow? I've heard 3-4 weeks but know all of you are the experts!!

Thank you all for the kind words and inspiration. I am so glad I found this site for more than a 1,000 reasons. I would feel so alone if it weren't for you all! Thank you Thank you!!


Caregiver to my Dad
BOT Stage IV SCC, HPV+
Dx on 9/9/13
Cisplatinx3- 1st dose 10/1/13
PEG in 10/20/13
PEG out 12/24/13
Rads x 35- finished 11/15/13
Never a smoker,drinker.
Joined: Oct 2011
Posts: 805
KP5 Offline
"Above & Beyond" Member (500+ posts)
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Getting those extra fluids makes a world of difference. I was so happy our MO insisted on them. Kevin drank quite a bit of water, but he still couldn't keep up.
We, as caregivers, understand the terrified and crying. It is absolutely the worst feeling to be so helpless and have to watch our loved one go through this, but they make it! It does get rough but stay with us and we will help you through it.
Hang in there.
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
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Administrator, Director of Patient Support Services
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Everyone is different and you will hear that phrase over and over as time goes on. Most members began with swallowing difficulties I would guess at about week 4 and it gets progressively more difficult as time goes on. Its a gradual decline, so at least its not like the patient wakes up one day and is unable to swallow. The treatment facility seems to be really excellent with taking the initiative to give your father extra fluids. Almost every center, the patient/caregiver have to request it or its not given. In my opinion, this should be automatic for all OC radiation patients beginning with week 1.

As far as when the N/V/D hits, it usually takes anywhere from 4 - 10 days after the infusion with the 3 bag method. Dont be surprised if the second dose is lowered and the third eliminated. This seems to be fairly common, I did experience this too. When the N begins to hit, give the nausea meds even if he isnt feeling bad. Continue to give them on schedule for days without missing a dose. If you get behind on the meds too often its next to impossible to get ahead of the sickness and when puking its awfully hard to keep the meds down. If V sets in.... remember everything that comes out must go back in, thats in addition to his usual daily intake.

Glad to hear you are ready for some rough days ahead. You will now be known as "the pusher" smile Do what is necessary for the best interest of your father even if at the moment he does not agree. I tried to quit rads but my son and nurse wouldnt let me. If I had my way I would have stayed in bed and buried my head in the sand and snoozed thru the whole thing until I felt better again. That mentality put me in the hospital. Wish I had my own pusher who could have prevented me from being too stubborn and lazy to get up and eat/drink when I was supposed to.

Hang in there! We are in your corner ready to help you and your father.



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: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
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"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
Likes: 3
N,v,d is definitely different for everyone - cisplatin made me feel mildly nauseated for a few days after. That's it. I was fine - another friend with the same treatment had his head in a pail vomiting for the entire 6 weeks. So that's the range sadly. My MO had me In overnight on chemo days and fed me bags of fluid not sure if that's why the symptomology was minimal - but I have to say I was well hydrated as I was in the bathroom hourly!! smile hope things stay ok -:)


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
Joined: Oct 2011
Posts: 30
Contributing Member (25+ posts)
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Joined: Oct 2011
Posts: 30
Mamacita, you had TORS & then radiation. Are you now clear of the cancer? How did the biopsy go?


DX in 12/2010. Stage 4 SCC HPV+ BOT swollen lymph. I've spent the past 3 years away from medical treatments. Instead I've focused on good nutrition, active exercise, singing, laughing, oral exercises and such. I've had neither pain nor discomfort. But I haven't been able to kill the cancer. So, I'm now considering robotic surgery and/or radiation.
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