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And no my hair is falling out at the base of my head.


Taking a break from the forum for a while. Thank you so much for your support if you've been supportive.
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The hair thing is not fun particularly if your a girl! Had that happen to me. I lived with it through the summer ntil the regrowth was long enough that I could have extensions put in. Now my hair is my own but a short bob. Its cosmetic I know but it helps feel Nomal if you at least look normal. Dry mouth will likely stick around for a whil - I'm a year out and it's okay most times but long conversations. And night my mouth still dries up. frown

Keep drinking the boost. Hugs


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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You may also loose facial hair and the whiskers below my chin line never came back so I only have to shave half my face now. Only good thing about this Tx. lol The hair on the back of your neck will grow back over time.

How many rads have you had and what, if any, chemo are you getting and what frequency is it given to you.


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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Hah, if you're a boy, the hair/beard loss is a bit easier, but as Cheryl said, for us girls, it's a bit of a mind game. I lost a 3 inch wide path on the back of my neck from ear to ear. I had my hair short at the time, so I wore lots of scarves, and then let the rest of it grow out to cover. Today, one year after rads, I finally have little spikes of hair back in that area, but I have let the rest of my hair grow down to my shoulders so it's completely hidden. You find a way to work around all the new things, especially eating. GOOD LUCK.


DX 12/6/10 of T3 SCC Tongue.
Surgery 1/3/11 was hemigloss & forearm free flap, midline mandibulectomy, Neck Disection-All nodes clear.
Ended rads 5/11/11. Taste buds back to about 80%. PEG removed 4/5/12, experimenting eating real food again. If I can do this, so can you !! Stay Strong.
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I started last wednesday (5 visits from then to today) and my saliva is already getting thick, my ears have phases of ringing, my tongue feels like its been burnt by hot coffee and my throat is scratchy.


8/24/11- SCC stage3:tongue reconstruct from left arm & radical neck, feeding tube,trache.
3/28/12- SCC:radical neck again,chemo/radiation.
Started Cisplatin/radiation 5/2/12. Finished 6/13/12.
37yr old male.
7/19/13: All checks/scans have been good. Body weight and strength have return.
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If your ears are ringing make sure you discuss this in detail with your MO. It is a very important side effect of the chemo. Your MO should change you over to another type usually carboplatin which wont have the same ear side effects. Do not get another dose of cisplatin, your hearing could have permanent damage.


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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[quote=davidcpa]You may also loose facial hair and the whiskers below my chin line never came back so I only have to shave half my face now. Only good thing about this Tx. lol The hair on the back of your neck will grow back over time.

How many rads have you had and what, if any, chemo are you getting and what frequency is it given to you. [/quote]
i hope i lose my facial hair. lol. i've never been a big fan of it. today i will have had 15 treatments and then i only have 15 more. i get treatments once a day 5 days a week.


Taking a break from the forum for a while. Thank you so much for your support if you've been supportive.
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"OCF Canuck"
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Hey the hair loss on the face is great especially if you are a girl with a stash... ;o)

Actually, I never really had a stash but I just thought I'd share. My hair at the back was about an inch long about three months out. ;o)


Good luck. Keep up the boost and fluids.


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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Surprisingly, it is my Mustache that was not only unfazed but invigorated by the radiation. My beard follicles fell off with tne skin and I did not have to shave daily again until this year.
Prior to the cancer, I had shaved off my mustache because it was growing in solid gray. When it did grow back, the hairs were half white and half red/blond and it's a nice handlebar.
I do not miss not having to shave my neck, even now it just scarred skin with zero whiskers and none likely.

Congratulations John on being half way there. I had not found OCF my first time with Radiation so I was very unpleasantly surprised to discover that the first two weeks AFTER my TX had ended were the worst of the entire TX. I had thought that once the actual radiation stopped, it would get better, but it often seemed worse. Just extending my mental calendar would have helped me avoid disappointment.
charm

Last edited by Charm2017; 05-09-2012 03:03 PM. Reason: typos

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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"OCF Down Under"
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Hi John, my brother's radiation finished 6 months ago and we cannot believe where that time has gone. He found it quite tough. The next few weeks may be difficult for you, but you'll blink and it will be behind you. I think the hardest thing for Simon was the constipation that was caused by painkillers (Fentanyl). It was very distressing, so keep up the water and if you end up on painkillers, be proactive and prevent the REAL Big C ever happening!

Take note of Christine's recommendation on water - it made a huge difference to Simon - he tried to drink 3 litres a day, and I'm sure it was a big part of him coping with the treatment. Si also added lemon juice to the water. Best of luck to you.


Brother 49yo DX 22/6/11 Tonsil SCC HPV+ Stage IV T4N1(?)M0. Carbo/docetaxel (Taxotere)19/7, 11/8 (with E-tux), 1/9; E-tux 11/8, 25/8, 15/9, 30/9, 14/10, 28/10; IMRT X 35 (70gy tumour;63gy nodes;56gy gen area) 19/9-4/11/11. Clear PET scan 1/2/12. 1 and 2 year post treatment checks good.
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