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davidcpa #110738 01-20-2010 05:51 AM
Joined: Sep 2009
Posts: 60
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Posts: 60
I was told not to use creams for at least 4 hours before Radiation.

And my scabs were from me being stuborn and going outside unprotected and getting a sunburn. Even though the sun wasn't out much.


Flip
_________________________________
Age: 54 SCC Tonsil + 3 nodes
Radiation and Carboplatin
Treatment 4/1 - 6/7/2009
No surgery, no PEG
Never smoked
Drink socially (brew my own beer and love wine. A bottle of scotch lasts me a couple of years)
CT 11/4/09 No sign of envolvement in Tonsil or nodes
davidcpa #110743 01-20-2010 07:48 AM
Joined: Mar 2008
Posts: 3,082
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The beauty of Vigilon is there is no cream to wipe off. It also keeps the skin so moist. [quote]It is a hydrogel dressing that provides a moist environment conducive to wound healing and granulation tissue formation. It relieves pain from burning, itching, and soreness; absorbs wound exudate, odor, and bacteria; and does not adhere to tissue. It conforms readily to any wound configuration, cushions and protects the wound, and does not interfere with topical medications.[/quote]
I did not need it with the second round of CyberKnife radiation but it was a godsend for the first round when all the skin from my face and neck crisped up.
Charm


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
davidcpa #110745 01-20-2010 08:05 AM
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Teresa

Im sorry to hear about Steve suffering so much. Towards the ends of treatments, it gets very difficult.

Swallowing.... No matter how bad it gets, keep making him swallow. So far sounds like you are doing good with that.

Skin.....I used Beta Val cream, its prescription. Do NOT rub his skin when it is in such bad condition. When he is finished with his treatment, before you pull out of the parking lot, dab the cream on. Its ok if it isnt rubbed in, it will soak in. My neck was so raw that they had to bandage my neck before the mask could go on. The gel that Charms mentioned sounds like another great product, wish I had been able to use that too. Never put cream on before going into radiation.

Talking.....Alot of us doing radiation lost our ability to speak. I lost my voice for about 3 weeks---kids loved it. LOL

Pain patch..... 50 is nothing!!!! At the end, I went from 75, to 100, 125, then 150 within 2 weeks. If Steve is still uncomfortable 24 hours after an increase, tell the docs. He shouldnt have to rely on extra pain meds to feel ok. Pain management is a very important part of tx. It does not help a patient to be in pain.

How many more radiation treatments? Hope I was of some help to you.


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: Nov 2009
Posts: 396
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he missed monday and tuesday but did 26th today. 14 more to go.

it is ironic that i was fully aware of all of the complications going into this...i just didnt realize that the complications would stall his treatment so much. he should have been in recovery by now.

note to self and newbies: NEVER EVER NEVER assume treatment will be done in exactly 8 weeks, it leaves u wide open for frustration and heartache.

andys IMRT is at 8am every morning. i only douse him with lotion afterwards and at night. im sure it has worn off by the a.m. but thanks for letting me know not to put it on him before treatment because as bad as it is...i probably would have started to.

he went from 25 to 50 on the fentynol but he cant tell any difference, is supplementing them with vicodin. still not doing its job. i will talk to the RO.

at this point, he is down 50lbs since treatment began. he still has 14 IMRT to go. im freaking a little about that. as u can see in the facebook pics, he was not a large man to begin with. it is so hard to see him wasting away right in front of my teary eyes...


Teresa
-----------
CG to ANDY. Nasopharyngeal Carcinoma (NPC)
T2N2cMxG4 stage 4. 43 @ dx 8/31/09
tx 9/21/09-11/06/09 cispatin/docetaxel/5-FU X3
PORT 9/9/09, PEG 12/07/09
35 IMRT-1/wk carbo 11/30/09-2/3/10
tx stopped due to complications
IMRT BOOST 3/08-3/12/10
PET 4/12/10 CLEAR!
PEG out 4/14/10
Joined: Jun 2007
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Teresa

Losing that much weight is not good. He needs to up those calories right away!!! It will make him feel so much better immediately. Push for 3000 calories per day. At one point I was taking in 5000 calories per day and didnt gain an ounce.


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: Nov 2009
Posts: 396
Platinum Member (300+ posts)
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Joined: Nov 2009
Posts: 396
we shoot for 3000 a day...maybe he does need more.


Teresa
-----------
CG to ANDY. Nasopharyngeal Carcinoma (NPC)
T2N2cMxG4 stage 4. 43 @ dx 8/31/09
tx 9/21/09-11/06/09 cispatin/docetaxel/5-FU X3
PORT 9/9/09, PEG 12/07/09
35 IMRT-1/wk carbo 11/30/09-2/3/10
tx stopped due to complications
IMRT BOOST 3/08-3/12/10
PET 4/12/10 CLEAR!
PEG out 4/14/10
Joined: Jul 2009
Posts: 453
"OCF Down Under"
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Posts: 453
Teresa, a very wise woman said to me when I joined this forum " hold onto your hat because you are well and truly on this roller coaster ride". It's certainly a learning curve and this is where you learn to live one day at a time. We just concentrated on getting through what each day threw us, not what would happen tomorrow.

Also we were told to aim for 3000 calories a day as well for Steve's weight. Your nearly done, Andy will get there. You are both doing an amazing job.

Wendy


Wife to Steve 43. DX 5 May 09. T4N2MO SCC tongue, floor of mouth, lymph nodes & jaw bone
No surgery
Teeth removed 06/07/2009
radiation 13/07/2009 x 7wks
chemo 15/07/2009 x 3 Cisplatin
last TX 28/08/2009
25/11/2009 PET-lymph node activity.
08/01/2010 CT Scan-ALL CLEAR
03/03/2010-Peg removed
01/2013 left side of Jaw removed and replaced with pectoral flap.
23/12/2020 scan show lesion in tongue
01/2021 SCC stage 3 base of tongue diagnosed
01/03/2021 chemotherapy started.
WendyG #110790 01-21-2010 03:51 AM
Joined: Nov 2009
Posts: 396
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Posts: 396
this is a frightening roller coaster and i am not amused...hopefully we are on the last slope. i think sometimes i just forget to breathe.
its a new day...lets do this!


Teresa
-----------
CG to ANDY. Nasopharyngeal Carcinoma (NPC)
T2N2cMxG4 stage 4. 43 @ dx 8/31/09
tx 9/21/09-11/06/09 cispatin/docetaxel/5-FU X3
PORT 9/9/09, PEG 12/07/09
35 IMRT-1/wk carbo 11/30/09-2/3/10
tx stopped due to complications
IMRT BOOST 3/08-3/12/10
PET 4/12/10 CLEAR!
PEG out 4/14/10
Joined: May 2002
Posts: 2,152
Patient Advocate (old timer, 2000 posts)
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Joined: May 2002
Posts: 2,152
You didn't say what time of day he is showering. There is supposed to be nothing on the neck or face during radiation so be certain to wash them both before going to treatment. You don't want the left over lotion on it from the previous night. I was told to use Dove or Olay soap only.

Take care,
Eileen


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
davidcpa #110813 01-21-2010 02:21 PM
Joined: Jan 2009
Posts: 225
"OCF across the pond"
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Gold Member (200+ posts)

Joined: Jan 2009
Posts: 225
Martin told me say, with the aqueous cream it is essentail to put in on very liberally. At least 4 tablespoons full, to try and quantify it. I think this is the only reason he didn't fry, I absolutely smothered his neck every day 2 times a day. before bedtime and after radiation. I didnt wash it off, because it dried during the night and it seems it got absorbed by the skin. Martin insists, don't be afraid to put loads on. The skin became smelly and peeled terrible (moisturised dead skin i suppose), but it wasn't burned or scabby and the skin under was fine (like a baby's bum he just said).


Girlfriend to Martin 49 years old at diagnosis
Diagnosed with SCC unknown primary June 2008.
Cancer found in single node Stage N2A (3 to 6cm).
Tonsilectomy 16th june, Radical modified neck dissection left side 30th june.
30 TX radiotherapy ended 9th October
First comparative study scan came back clear
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