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Joined: Sep 2008
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Tim's last radiation is Monday, thank God. I know the next few weeks will be difficult, but my specific question is regarding his neck burns. Will those actually get WORSE over the next few weeks? As it is, his neck looks like it's been through a meat grinder. We're using silvadene cream, which works to a point. But if it gets much worse we're going to need to do something else.

Also, how about the nausea? Once the chemo is out of his system (last treatment was this past Wednesday) will the nausea end? He's on zofran and ativan (compazine doesn't work for him) but still he vomits. He's lost 25 pounds WITH the feeding tube!

Thanks, everyone.


Caregiver to husband, 44, nonsmoker, nondrinker
Diagnosed 7/15/08 with BOT SCC, stage IVa.
Two positive nodes removed
Cisplatin and erbitux ended 10/15/08
Radiation over 10/20/08
Back to work 11/24/08
PEG out 12/9/08
Scans 12/2008 and 3/2009 Clear
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Wendy,25 pounds is not too bad, all things considered. Of course, I don't know where he started. I lost about 35 myself, but let's just say I had some spare poundage that I could bear to part with.

I did not have a big problem with Nausea, just a little from the Amifostine. But it should abate fairly quickly once the cocktail of drugs abates. I did not have acute burns, but my neck became a bit more tender over the week or 10 days following the end of treatment, then turned the other direction.

Glad he is almost finished! Thoughts are with you.


Jeff
SCC Right BOT Dx 3/28/2007
T2N2a M0G1,Stage IVa
Bilateral Neck Dissection 4/11/2007
39 x IMRT, 8 x Cisplatin Ended 7/11/07
Complete response to treatment so far!!
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Wendy,

I didn't have the Peg and I was as fit as anyone could have been going into the Tx and I couldn't afford to loose 5 pounds. I lost 35 pounds and looked like crap. Felt worse. Nausea was my worst side effect and it was probably all my fault because nothing worked for me pain pill wise without causing nausea so I didn't keep much down and that made matters far far worse. I finally stopped all pain meds and swallowed through the pain but at least the nausea got better. Three weeks post Tx I walked out of my dark tunnel and all turned better.

I really never suffered and facial burning so I can't help you there.


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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God, three weeks sounds like FOREVER when I see how awful Tim is feeling right now. :-((


Caregiver to husband, 44, nonsmoker, nondrinker
Diagnosed 7/15/08 with BOT SCC, stage IVa.
Two positive nodes removed
Cisplatin and erbitux ended 10/15/08
Radiation over 10/20/08
Back to work 11/24/08
PEG out 12/9/08
Scans 12/2008 and 3/2009 Clear
Joined: Jan 2008
Posts: 706
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Wendy- My husband's neck looked like that for about a month. Even now if he is in the sun(w/o sunscreen) he gets redder in that area. Hang in there-it will get better.

Sue


cg to husband, 48 Stage 1V head and neck SCC. First surgery 9/07. Radiation and several rounds of chemo followed. Mets to chest and lungs. "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Went home to God on February 22, 2009.
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I never had nausea but did have neck burns and some on my jaw where it would ooze nasty looking stuff out. It cleared up after a few days when I didn't get rads or chemo anymore. But I did use aloe and aquaphor. As for weight I lost 70 lbs because I could't eat and still can't but am back up to 165. Wendy tell Tim he will come out a winner. He has a great caregiver it seems.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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Wendy

it's been 33 years since I left Pittsburgh but one year ago with 18 more radiations to go, my neck (front and back) , throat, upper shoulder and cheeks were bright red and raw. The doctors said they had never seen such an extreme reaction to Erbitux and radiation. Patients starting out but sitting in the waiting room actually asked me: "Will I look that bad?" None of the creams or salves worked. What did provide real relief was applying the Vigilon gel burn dressings. My wife had to get them from a medical supply store, but they were a godsend. We kept them in the refrigerator and they were so cool and soothing plus when you changed them, the oozing dead skin stuck to the gel but did not tear away at my skin causing bleeding like the gauze alone had done. That's when I had to up the pain meds to two fenatyl patches plus 10 oxycodene a day. Showers were impossible. Just because TX is over, don't let the doctors back off on pain management. It was no big deal to wean off the dope.
Now all that skin has healed perfectly: no mottling, no hardness and even a stubble of beard on the cheeks. (the neck is perfectly hairless so less shaving time). While everyone is different, if my extreme case could heal, your husband's should also. It didn't actually get worse after TX over, it just seemed like it since I thought there would be instant improvement once the burn and poison was done. Instead it stayed achingly the same for about two weeks, but then got better every day. Hang in there: you've crossed the finish line but just like the runners in a race don't all pile up and crash there, you have to keep moving to the rest area even though you are both tired. so the short answer to your question is : Not soon enough - but soon.


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
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Wendy,

Good news....If he's like most of us he will NEVER have to shave under his chin again. Saves time and materials. That's the CPA in me.


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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Wendy, sorry to hear your husband is struggling right now. The end and first 2/3 weeks aftr tx ends are the worst times. It will be better very soon.

Keep loading the cream onto your husband. Dont rub it in, just smooth it on and let it soak in. No matter how bad it looks, you will be surprised at when he is healed at how good it can look.

With everything your husband has gone thru, only losing 25 pounds is great. Keep pushing the fluids and nutrition so he hangs onto his weight.

Hang in there, its almost over.


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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I have never stopped shaving or getting hair cuts. In fact I think the hair is thicker than before. Back to using a razor and shaving cream again. I am lucky in a lot of ways and unlucky in others. Yep, we are all different.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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