| | Joined: Dec 2008 Posts: 126 Senior Member (100+ posts) |  Senior Member (100+ posts)
Joined: Dec 2008 Posts: 126 | Hi, Did anyone lose their hair from the cisplatin alone? Richard's MO said there might be some thinning. This is the least of our concerns, but I was just wondering if the hair loss happens all the time. Thanks, Geri
Geri-CG to husband Richard, 62 yrs old. Former smoker, quit 30yrs ago, light drinker. Dx after tests with BOT T1N1M0. Tx to start by end of Dec. Seven wks IMRT with 2x Cisplatin-2x Erbitux. Peg in 12/08- removed 4/21/09. Looking good so far. Clear Pet &MRI 8/2/09
| | | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | | "OCF Canuck" Patient Advocate (1000+ posts)
Joined: Sep 2006 Posts: 1,357 Likes: 5 | I lost a couple of patches of hair, but my RO said that was due to radiation exit/entrance points and not the cisplatin. Not sure what others' experience has been with it.
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | | Joined: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | Geri, I received both cisplatin and Erbitux and definitely experienced overall thinning in addition to the giant bald spot above my neck from the radiation. Couldn't tell you which drug caused the thinning though. Happily, it all seems to be growing back in now. - Margaret
Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | The radiation caused me to lose hair on the back of my head above the neckline in 2 spots. It took a while, but it has grown back. I did not lose any hair from cisplatin.
ChristineSCC 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  | | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | I lost the hair on the back of my neck where the rad exited and I also lost all of my whiskers. The hair on the back of my neck grew back over many months post Tx and the whiskers ABOVE my chin line came back but not BELOW my chin line so I now save time and materials when I shave. I also got a Turkey Neck" as we call it from the rad and I was told it would probably go away but they lied to me again. lol
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.
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Since I already had a major bald spot (okay the entire top and back of my head), hair thinning was not an issue for me. No Cis just Erbitux and lots of Rad, but my neck and face became so sensitive that I could not shave so I ended up with a beard that fell out patch by patch with the dead and dying skin. A year out, same story as David on shaving -only need to above the chin, my neck is perfectly smooth. Back of neck hair making an appearance very slowly. I did daily lymph node massages and steam room visits to make the turkey neck go away quickly. As everyone notes on OCF, radiation is the gift that keeps giving.
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
| | | | | Joined: Jul 2008 Posts: 507 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2008 Posts: 507 | Around three months post Tx my beard was all back and the bald spots were gone.
I have a waddle down around my larynx which is apparent a bit unusual. I was surprised how fast it developed. My MO thinks most of it will gradually go away, but my ENT is less optimistic. I think it is getting smaller.
Dry mouth now is mostly just when I am sleeping.
I still don't have much of a taste for fruit. Sweet is just not coming through all that well.
Last edited by DonB; 01-06-2009 10:34 AM. Reason: typo
Don
TXN2bM0 Stage IVa SCC-Occult Primary
FNA 6/6/08-SCC in node<2cm
PET/CT 6/19/08-SCC in 2nd node<1cm
HiRes CT 6/21/08
Exploratory,Tonsillectomy(benign),Right SND 6/23/08
PEG 7/3/08-11/6/08
35 TomoTherapy 7/16/08-9/04/08 No Chemo
Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11
| | | | | Joined: Sep 2008 Posts: 489 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Sep 2008 Posts: 489 | I will look up the two types of chemo that they tried pre-surgery on my tumor that just seem to grow more with each treatment. I lost every bit of hair on my body in the 6 weeks that we were trying chemo and only had 2 treatments 3 weeks apart. I even lost my eyelashes and my hair came out by the handfuls one day. If I had been in a strong wind it would have just blown away. I did not miss shaving at all.
Now my hair is returning, but as they warned me it is very different than it was. I have been dish water blond my entire life and now I have coal black with lots of gray hair on my head. There is a big bald area from the top of my ears to my shoulders from the radiation in the back, but it will come back. The texture of my hair is different also - not as fine as it was. I really could care less I am just happy to have hair to help keep my head warm.
My neck is still very red, but it is not oozing like it was. It is really dry and stiff now and I am putting the Eucerin on the lower part that they quit radiating before Christmas and still treating the upper part with the Biafine. I had to get another humidifier and have it cranked up today trying to bring the moisture level in the house back up. What are the odds that two brand new humidifiers would both go bad??
I am really taking in a lot of water each day and being extra careful with the neck area. I picked up a bag of dog food the other night and my neck split open and started bleeding. It was just the top layer of skin that split, but it was scary. I used to be able to heft 100 lbs sacks of feed and hay around - now 35 lbs of dog food makes me crumble. It will come back.
48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
| | | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | [quote=Good1]I picked up a bag of dog food the other night and my neck split open and started bleeding. It was just the top layer of skin that split, but it was scary.[/quote]Hmm, my experience has been that the sack would split, not me...
Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | | Joined: Sep 2008 Posts: 489 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Sep 2008 Posts: 489 | Good morning Pete and how do you feel today?? Thanks for the giggle.
48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
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