| Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2011 Posts: 805 | Kevin's hair started falling out shortly after his first round of cistplatin, taxo and 5FU. Can't remember how soon, but it was pretty quick. So sorry you are having to do this. Just sucks. Kathy
Kathy wife/caregiver to: Kevin age:53 Dx 7/15/11 HPV16+ SCC Stage IV BOT/R Non smoker, casual drinker 7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11 PEG placed 9/1/11 Removed 11/8/11 Clear PET 10/12 and 10/13 and ct in 6/14 | | | | 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 American Cancer Society will help with providing wigs for cancer patients who lose their hair. They will help you all you need to do is give them a call. They are available 24/7. Your doc will need to fill out a form.
PS.... Please add a signature. It greatly helps everyone keep track of your history and help answering your questions. Click on the "My Stuff" tab and on the drop down menu, select "Edit Profile". Scroll to the bottom and type in the white box, click "submit". 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: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 5 | So glad you are doing treatment - you are doing this for your dad, for yourself, and the fact that you have friends helping you should tell you the one thing you need to know... people love you and care!!!! remember this. Hugs to you. I agree... taxol, is the one that will cause you to lose your hair, but as quickly as it falls out, it will grow back. My poor friend who has peritoneal cancer (manageable, not curable) has had her chemo changed 3 times, each time she loses her hair, but then within a month or 2 she has sprouts coming back in and its curly hair. It's interesting with radiation my hair all along the back of my neck fell out, and grew back in - I had about an inch and a half of growth within 3 mos after treatment, but the funny thing is it came back in black and curly, where before it was gray!!! and wavy to straight. I went today to get my roots touched up and the hairdresser said it's weird your hair here all up the back is black.. but the rest is gray! so rads comes back in full color, but the loss from chemo it comes back in a normal color ( gray if you're gray...) , my friend's has come in gray every time. anyway my point... it will come back quickly... push for the clinical trial ( Erbitux? is that the trial?) you will get through this. 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
| | | | Joined: Mar 2011 Posts: 30 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Mar 2011 Posts: 30 | My friends are absolutely the best! I love them SO much. I can't believe the people who have crawled out of the wooodwork to help. One of the surgeons that I worked with brought over his trailer on the day of his 50th birthday bash (200 guests, band, bar, catered food...the whole 9 yards) so I can start sorting and donating stuff. Other people I worked with have been doing yard work and taking care of my garden...often they come over before I'm even awake, to work before the heat of the day...I don't even know who all is doing these things.?.who to thank. People bring small casseroles over for my dad's dinner. It amazes me how kind and caring everyone is being.
My father wants to keep my cats when I'm gone, but I just set up a backup plan, for when he goes (he's 82.) Sue was my sister's Very best friend growing up...she was devastated when she learned of Lori's suicide. She's a cat lover since childhood and has experience with feline renal failure. She offered to take them, if for some reason Dad can no longer manage it. She lives in Denver, but her parents are still in town, so she wouldnt really have to make a special trip. I've set aside money in my will for their care. I feel like a great weight has been lifted off my shoulders. Dad is going Monday to put the exact same thing in his will...whew! Getting care for my kitties was a huge worry for me.
I'd really like to move back into my own house for a little while. I had my kitchen remodeled, but I haven't gotten to enjoy it yet. Soon I won't feel good enough and I'll have to move back in with dad for good...but I'd really like to use the new appliances ( especially the dishwasher!) I don't think my dad wants me to go, but I need to for me. Wish me luck, I'll probably start fighting that battle in the next week or so.
Gues I'm done rambling. Time for bed. Goodnight friends. | | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 5 | It sounds to me like you've already given up, I know reality looms but there is always the potential for the treatments to work. I'm not talking through my hat either, I was just saying to charm, there is a woman on a Facebook page I belong to who has had 5 recurrences and radiation with each one and she is cancer free now, my friend Jeanna's husband was sent home to die..he's NED now. Christine has had three battles and is now cancer free. Im not saying do anything extraordinary but do get treatment, do a trial if you can. You're so young. I am glad you've made plans for your kitties so your mind is at ease, and definitely hope you get home to enjoy being on your own. You deserve that and more. hugs we're here to walk through this with you.
Last edited by Cheryld; 08-23-2012 06:48 AM.
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
| | | | Joined: May 2011 Posts: 287 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: May 2011 Posts: 287 | Hi Kellijojo, the cocktail of Chemo that you are getting is one of the potent anti-cancer combination. If it works for you then the tumor will certainly be in control and can be operated upon. You'll start losing hair within a week. What I additionally suggest is that before you go for next round, do get a PET/CT/MRI scan done against the old one to see if it worked.
Don't lose hope so soon, sometimes believing that you will be cured helps.
Note: Palliative Chemo does not mean that there is no cure, the intent here is to reduce the tumor size prior to curative treatment. Father; 67 yrs; RIP: 2012/05/26
TX:SCC pT2N1M0G2;Glossectomy+SND+CCRT(59.3Gy+6xCis.)[2009] TX:Nodal Mets; 3xDCF[2011/05/05] TX: RND + PMMC Flap[2011/07/11] DX:SCC PNI+ECE TX:Re-RT 60Gy[2011/09/21] TX:Gefitinib 250mg[2011/12/18]
| | | | Joined: Mar 2011 Posts: 30 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Mar 2011 Posts: 30 | I wiiLl certainly talk with Dr. Danso about a repeat CT, and when he feels is a good time to do one. They started me on a low dose doxycycline to hopefully get a step ahead of the Erbitux acne rash, before it starts. I just want to shrink the tumor in my tongue/throat so I can continue to talk, and maybe resume some chewing and swallowing. I bought a baby toothbrush ( it fits!) and have gone to town brushing my teeth. It was so disheartening not to be able to brush, except with those foam lollipop things. The little things make such a big difference! | | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 5 | Hugs!!!! Please consider the trial... Your friends have proven they will help. And yeah on the toothbrush! Every little thing helps!
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
| | | | Joined: Mar 2011 Posts: 30 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Mar 2011 Posts: 30 | Thanks cheryl, but honestly, I'd rather go with something tried and true and, of course, closer to home. I've never really been much of a risk taker, and this feels like a more comfortable fit for me. | | | | Joined: Sep 2009 Posts: 177 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Sep 2009 Posts: 177 | Hi Kellijojo,
Just wondering how you are doing? Hope things are going well. God Bless!
Wendy 46yrs@ DX 9/16/09 T1N0 SCC of leftlat tongue, poorly differentiated.Partial glosectomy 10/01/09 & 10/16/09 & 11/10/09 60-70% tongue removed, Radical fff, 38 nodes-clear, no rads/chemo. 3 petscans-clear
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