#23744 07-12-2007 04:03 PM | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | OP Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Hi: I have Stage 1 oral cancer. Its in my cheek and top of my mouth. My ENT said I may not need surgery if the cancer responds to this type of treatment. If I would have it at this point he would need to take out my whole cheek and palate maybe even a few teeth. This is going to be first treated with radiation and chemo, with hopefully surgery not needed. Has anyoe been thru this before without surgery? Does this sound right? Anybody out ther gone thru chemo and not lost their hair? 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 | | |
#23745 07-12-2007 05:56 PM | Joined: Mar 2002 Posts: 1,140 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Mar 2002 Posts: 1,140 Likes: 1 | Hello, Christine.
There are many here who have had rad and chemo, with no surgery.
Hair loss depends upon the chemo agent. The most common agents, cisplatin and carboplatin, do not cause hair loss. If the drug name begins with TAX, one does lose hair, but I kept my eyelashes, eyebrows, and a fuzz all over my head (and it all grew back quickly).
Loss of hair, while upsetting, is in reality a small price to pay for beating the cancer, so if that is what is recommended, just smile and go with it.
It is wonderful that your cancer was caught at such an early stage.
Let us know how you get along. | | |
#23746 07-12-2007 11:50 PM | Joined: May 2007 Posts: 632 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: May 2007 Posts: 632 | Hi Christine, I am currently having chemo, ready to sart second cycle, and my hair, although a little drier and coarser than previously, is all still there! Brenda
Brenda in UK--Diagnosis 30/5/07--undifferentiated carcinoma in right jawbone and muscles. Stage 4 6/7/07--new diagnosis primary is in lung. Finished 4cycles of palliative carboplatin/gemcitabine therapy September 07 Now dying to live!
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#23747 07-13-2007 01:50 AM | Joined: Aug 2006 Posts: 294 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Aug 2006 Posts: 294 | The thought of even temporary hair loss seems so drastic when trying to accept that dreaded diagnosis thrown at you. With time, along with success in treatment, you will look back at being temporarily "follically challenged" as a very minor bump in the road.
Bill D.
Dx 4/27/06, SCC, BOT, Stage III/IV, Tx 5/25/06 through 7/12/06 - 33 IMRT and 4 chemo, radical right side neck dissection 9/20/06.
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#23748 07-13-2007 08:26 AM | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | OP Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Thank you all for your help and support. I guess losing some hair isnt the same as losing my whole cheek. The whole concept of being sick isnt something I have accepted very well. Im a single parent of 2 teenagers without anyone except my children to help me. My life has always revolved around my children and now I need to come first which is taking quite a bit of getting used to. I will find out more next week after see a few more doctors. 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 | | |
#23749 07-13-2007 11:05 AM | Joined: Mar 2002 Posts: 1,140 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Mar 2002 Posts: 1,140 Likes: 1 | Christine, if you do lose your hair for a while, I understand the American Cancer Society will supply you with a wig, if you cannot afford one, and maybe even if you can. I do not have all the details, but please know there are options. I went to several thrift stores and collected many colorful scarves that I wore happily. I then passed them on to another patient. Lots of options! | | |
#23750 07-13-2007 11:58 AM | Joined: Jun 2007 Posts: 718 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jun 2007 Posts: 718 | My husband was on Cisplatin and is currently on Erbitux...I think those and Carboplatin are the main oral cancer chemos and I have heard hair loss is not a major issue with these. They told my husband that thinning might happen, but probably not major loss. I have long hair and would be sad if I lost it, so I understand your concern. Although, every day when I walk by the chemo area, I am amazed at how beautiful the bald women I see in the chemo area are...with or without scarves, the ones who have lost their hair are just remarkably beautiful. Christine, are your teenagers of driving age? Do you have family close by? Chemo causes a varying amount of side effects...so some people are able to tolerate it quite well. But, radiation, over time is very fatiguing...as are the pain medications that are often necessary from the side effects of the radiation. When I hear that someone is a single parent or alone, my biggest worry is how they will drive themselves to treatment and get the necessary prescriptions and supplies. My husband just finished week 4 of his treatments. I drove my husband initially to his daily treatments because he had a fair amount of anxiety. Then, he started to have side effects from the chemo. Now, radiation fatigue and the narcotics have set in like a brick wall. I would no longer trust him in a car...nor does he feel like he could drive one. I am not trying to scare you. But, while you have some time before treatments I encourage you to get some back up transportation plans in place. I know at our hospital there must be a service for people in the local area as I overheard a very loud woman on her cell phone complaining that the van had picked her up 30 minutes early and she didn't get to finish her breakfast before her RT appointment. ;-) As icky as the chemo and radiation are, I'm so happy for you that this was caught as a stage 1. My husband was stage 4 before we had any idea that he had cancer. Yet, we believe that he will be cured, and chemo and radiation seem to be the standard way to go...regardless of the stage. And, even though this has been a hard road, we know in the grand scheme of life it will be a short (yet very memorable) period. Good luck. I also hope your kids are more helpful than mine who are 12 and 13. My kids have so much confidence in my husband's recovery, they don't always realize how hard this is on him...and, pro-active or helpful aren't words I would use to describe them...even though they are really great kids. Do you know when your treatments will start? Wishing you the best, Margaret ---------- C/G: Husband, 48 (at time of dx) Dx 5/18/07 SCC, BOT, lymph node involvement. T1N2BM0. (Stage 4a, G2/3) Tx 6/18 - 8/3/07, IMRT x 33 Cisplatin x3 (stopped after 1st dose due to hearing issues). Weekly Erbitux started 6/27/07 completed 8/6/07.
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#23751 07-14-2007 12:53 AM | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | OP Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Margaret:
I see my radiogist/oncologist and the hemeotoligist on Wed. July 18th. At this point Im not sure who does what, just know its more doctors. The nurse said they will probably start me right away.
I cut my long hair short last night before I would have any loss in case I need a wig made. This is only the second time in my whole life I have had short hair, so it is a little upsetting for me.
As far as children go. They are pretty much in their own world. Mom is sick but really is fine type of mentality. I know I wont get alot of help for my 16 yr old daughter, she has alot of medical issues herself and does not drive. She has ADHD along with several other problems. My son is 17 and can help to drive me. He is more helpful and responsible. He was scheduled to start college next month, but has put that off til the second semester. No other family at all.
I also live very far from everything, way out in the woods 20 minutes to get to a store. My hospital and doctors are 45 mintues away. Im hoping when I see my doctors they can refer me to any volunteer agencies that can help to drive me to appointments.
Your husband is very lucky to have such a strong supportive wife. Did your husband have any surgery or is it radiation and chemo? From what my doctor has said, even it the cancer is at stage 4 there is such a high success rate. Hang in there! Together you will overcome this terrible disease. 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 | | |
#23752 07-14-2007 02:31 AM | Joined: Jun 2007 Posts: 35 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Jun 2007 Posts: 35 | Hi Christine. Good luck with your treatments...I know little of chemo or radiation to be of any help to you as in my case it wasnt deemed necessary and I have had surgery only (I am still trying to figure out if that is a good or bad thing or not!!)
Still, I hope and pray everything goes well for you. Keep checking in on the message boards here...they have been a tremendous help to me...both practical and emotional.
Take care
Dx:06/08/07 SCC left Lateral tongue Stage I/II Tx: 07/09/07 Partial -10% approx. of tongue taken round 1cm x 3cm No rad/Chemo deemed necessary.....ex smoker 07/17/07 CLEAR MARGINS!!! 05/15/10 Sore has returned and will not leave.back to see ENT 05/17/10 04/07/11 Lump on neck.....ENT on 04/12/11
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#23753 07-14-2007 02:31 AM | 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 | Christine,
Calm down and stop worrying about the hair loss. If you have the chemo that most of us had you won't loose ANY hair due to chemo. If you have rad though, you will loose the hair on the back of your neck where the rad exits from your Txs. You also will loose any facial hair below your chin line.
I also did not have surgery and I also was a Stage IV and so far I also am a total survivor. I am just 10 months out of Tx and I am riding my bike 80 miles a week now which is only 20 miles short of what I did pre cancer. The concurrent rad chemo may be really tough to endure but it is a short period in the scheme of things it's not long at all. Your recovery will be very slow, or seem that way, but you will recover just like you were before Tx.
If you want to know more about my details of Tx, let me know and I'll repost what I wrote shortly after my Tx ended.
Hang in there and get your son ready for active duty as your caregiver. Encourage him to ask any questions or express any emotions on this board. He will find the exact help he will need to get through this with 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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