#55289 08-06-2004 06:01 AM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) |  Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Sabrina,
Webster-anatrampoline: the latest Russian gymnast expected to sweep in Athens.
I am sorry that I am glad to hear others have "hair pain". It is so difficult to describe it to people as they grin and smirk!
Ed
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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#55290 08-06-2004 10:38 AM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | | OP Patient Advocate (1000+ posts)
Joined: Mar 2003 Posts: 1,384 Likes: 1 | Thanks for the replies. Ed good humor!  I guess I'd like to know what causes this hair/scalp pain. In my case it shows up in areas that were not in the rad. beam. As for the stretching I agree we need to do it but in my case when the muscles really "go off" stretching makes it worse. I have been using muscle relaxants but perhaps i'll have to try that Anna's trampoline stuff. I guess it is more of the gift that keeps on giving.
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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#55291 08-06-2004 04:03 PM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | I don't have many headaches but I have noticed a phantom pain on the top of my head that feels sensitive to the touch, sort of like a sunburn. My wife has checked it under magnification and can't find anything (she's an esthetician and knows what to look for). I don't remember this prior to radiation. Maybe some kind of nerve damage?!?
Gary Allsebrook
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Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
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"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#55292 08-06-2004 04:20 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | Gary,
I have told my husband that "my hair hurts" a number of times since I finished radiation. If I put my hand on top of my head very lightly, it's as if my hair hurts just a little, like it's sore. I also still have the driest lips around. I can go hours without a drink, but panic if I cannot find my chapstick.
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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#55293 08-06-2004 06:19 PM | Joined: May 2004 Posts: 137 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: May 2004 Posts: 137 | Gary & Minnie, This is normsl, don't ask why. The hair hurting is so real, and I mean all you have to do it barely touch it and it is like a electric shock, some of this makes absolutly no sense. Does it?? Vicki Lynn | | |
#55294 08-07-2004 01:29 AM | Joined: Apr 2004 Posts: 156 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Apr 2004 Posts: 156 | Minniea -
Same here with the dry lips! I currently have 2 chapsticks in each car, two in my bag, one at work, two next to the bed, and one on the coffee table.
That paniced "no chapstick" feeling is the worst!
Ed -
No kidding! I'd love to transfer the feeling for just 5 minutes and see how they like it! Wipe that grin right of their face. But since yanking their hair will probably land me in jail, I guess we have to live with the smirks.
I just visualize a swift kick in the butt (Wonderful,I sound like my mother - when did that happen?). Then they wonder what I'm smirking about.
Sbrina | | |
#55295 08-07-2004 08:09 AM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | And I don't even have any hair on my head. So my scalp is easy to inspect and there is nothing there. I don't have an electric shock effect - just feels like I am touching a sunburned area.
Just more cancer weirdness (the so called new normal) I guess.
Gary Allsebrook
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Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#55296 08-12-2004 05:54 AM | Joined: Feb 2004 Posts: 43 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Feb 2004 Posts: 43 | I had headaches in the back of my head on the right side before and after radiation. They went away after the neck dissection and removal of the remnets of the tumor which the doctor said had shrunk so much, he thought it was scar tissue from the radiation. My main thing now is a stiff neck, frozen shoulder and knot in the left shoulder blade muscle. I begin and look forward to PT on monday. It's honestly been very difficult, but also a positive challenge on finding solutions to problems and slowing down and taking care of oneself. Best Wishes, Tom
SCC Tonsil Rt T3 N2b M0 side DX Jan 04 Tx 36 Rad 3 cisplatin Tx ending May 04. partial neck dissection july 04..... July 15,08 mets to liver Age 57...Did Methotrexate Sept 08. Now on a trial drug Panitumumab, Feb4,09 treatments stopped. going to Tibetan Medicine.
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#55297 08-12-2004 05:33 PM | Joined: Nov 2002 Posts: 458 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Nov 2002 Posts: 458 | I had the "hair hurts" episode each time I had rad/chemo. Started with that, then a time period of dry scalp. Used a shampoo called "Nizoral" for about 3 weeks, hair quit hurting, scalp went back to normal, no issues. Give it a try, might help.
Bob
SCC Tongue, stage IV diagnosed Sept, 2002, 1st radical neck dissection left side in Sept, followed by RAD/Chemo. Discovered spread to right side nodes March 2003, second radical neck dissection April, followed by more RAD/Chemo.
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#55298 08-17-2004 02:45 PM | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | I know I'm late on posting on this thread, but just catching up from vacation. My husband and I spend a week playing the ponies at Saratoga racetrack every year. We stay in Schnectady NY the 'hard water' capitol of the world. Hard water require hours of rinsing. I do not ordinarily get headaches, but for some reason while on vacation, as I'm leaving the hotel for the track, I have this dull headache on the right upper part of my head every morning. It gets worse as week progresses and by the time I am driving home, my hair hurts. This is insane and has never happened before. Four days later, I'm back to my own shower and stressful job and reading your posts about hair hurting. Mine no longer hurts.
I think my problem, check if it may be yours, is that because the water is so hard in this hotel, I had the shower head pounding on the top of my head every morning trying to get the shampoo out of my hair, and I am certain that caused the headache and hair pain. this is the first time this has happended. It may be we are more sensitive due to having radiation, but I was certainly pleased to know that I'm not the only one with hair pain. A new experience 7 years out of radiation.
And yes I'm on synthroid but doubt that has anything to do with hair pain. I did have a MRI to check 2 years ago to check for possible brain tumor because I was having unexplained headaches related to nothing. Came back clean, but don't ever try to put a mask on my again. I have had a hard time getting my thyroid level back to my base line. Think we finally got it, but have it checked every 3 months.
I love this forum. So nice to know I'm not the only one with a problem. So is your shower head the problem???
Take care,
Eileen
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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
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