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#15394 05-08-2004 04:18 AM
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Robr Offline OP
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To all members 60 and older. I didnt mean to offend anyone with my age statment. Of course right after I hit the send button I realized I could be offending some people. Sorry.

Also, I have heard arguments for both cases. Some say if you have risk factors like smoking wich I have, you are on the wrong side of the curve (i.e. field cancerization or condemned mucosa).
Still others claim if you didnt have these risk factors you are on the wrong side of the curve.

It just goes to show everyone is differnet. What applies for one does not apply to another.

That in my opinion is one of the hardest parts of this whole deal. You have no real frame of reference. It's like standing in the middle of the street and waiting for a bus to come by and take you out. He might hit you, he might not. You just never know and cant use others as a point of reference. Sucks, doesnt it?

Have a good one,
Robert
-------------------------------------------------
SCC Right Tonsil, 1 Node MET, T1,N1A,M0 treatment finished 2/13/04.


SCC 1.6cm Right Tonsil 10/3/03, 1 Node 3cm, T1N2AM0, Tonsil Removed, Selective Neck Disection, 4 Wks Induction Chemo (Taxol,Cisplatin), 8 Weeks Chemo/Radiation (5FU,Hydroxyurea,Iressa), IMRT x 40, Treatment Complete 2/13/04.
41 Years Old At Diagnosis
#15395 05-08-2004 05:05 AM
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Don't worry Robert If you REALLY offend anyone they will let you know! I believe radiation makes the hide thicker. Welcome to our standing in the street party!


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.
#15396 05-08-2004 07:01 AM
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Hi Robert,
Welcome and I hope this board helps you as much as it helped me. I was diagnosed on April 1st 2003, my grandaughters 5th birthday. Stage IV in my jaw, removed my jaw bone and replaced it with a bone from my leg. One node involved and I did radiation to both sides. 41 at time of diagnosis and I'm 42 now. I am 10 months out from treatment and one year from surgery and so far so good. I've had some scares over the past year but the fear truly does get smaller. Never goes away but learns it's place.
A baby on the way, how exciting! I have 7 children and would have more if it was meant to be. My oldest daughter, the mother of my two grandaughters, is expecting again in Oct. I just found out and am very excited about having a baby around. How old are your children?
Use this board to help you, it will become a comfort to you and a source of knowledge that will make you feel more in control. Cancer has a way of making us feel out of control, takes away that safety net we never even knew we had! But, it's in our nature to adapt and you will find yourself doing just that.
I would still be floundering without the people on this board. I talk about them to my family as if they are friends that live down the street. My daughter, Amy, asked me the other day if Mark was back from vacation, lol.
I wonder if Brian truly realizes what he has created with this board.
Take care Robert,
Love Minnie


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.
#15397 05-08-2004 07:41 AM
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Karen,

I sent you a private message, but I'll also respond to your's and Dee's concerns about my statement. I guess I should personalize this a bit more rather than generalize. My cancer isn't behaving despite all treatment. When I say agressive, I mean growly rapidly and resistant to treatment. I wasn't necessarily trying to correlate the two (risk factors and reoccurance), I was repeating what my team at MD Anderson told me about my cancer.

I think in general, head and neck cancer is difficult to treat because it's usually diagnosed in later stages regardless of risk factor.

I hope I didn't mislead, worry, or concern you.

Lynn
Lynn


Stage 3, N0, M0 oral tongue cancer survivor, 85-90% of tongue removed, neck disection, left tonsil removed, chemo/radiation treatments, surgery 11/03, raditation ended 1/04, lung mets discovered 4/04,
#15398 05-08-2004 07:52 AM
Joined: Jul 2003
Posts: 235
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Hi Rob,

Welcome. My mom was treated at U of C. Pretty much the same regimen, with the exception of Cisplatin -- she had Carboplatin. You're going to find this forum to be a great place. I got lucky and found it last Summer. I can't tell you how helpful everyone has been. Glad to hear you are doing well. Take care.


Mom's caregvr. DDS failed to dx 01/03. Dx Stg IV SCC 05/03. Induct. chemo, IMRT, 5FU, H, Iressa, Neck disect, radiation. Dad's caregvr. Dx 01/04 Ext. Stg SCLC. Mets to liver/bone 08/04. Died 11/12/04. Mom tongue CA dx 06/13, hemiglossectomy (80% removed) 08/13. Clean margins and nodes, but PNI. 6/15/15: Tongue CA at base of remnant tongue. Declined further tx; hospice.
Died 10/13/15. What a long and difficult journey.
#15399 05-08-2004 10:23 AM
Joined: May 2004
Posts: 218
Robr Offline OP
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All,

Thanks for you kind responses. I look forward to making friends with all of you.

My kids are 9,7,5,4, and 0 (due 5/23) I too would have 4 or five more if I was ten years younger (oh theres the age thing again).
My wife and I love kids.

Didder, how is your mom doing? And, dont you just love the staff at U of C! Since your mom is on the Iressa trial, she is dealing with DR.Ezra Cohen. A wonderful man and an excellent doctor. He informed me the last time I was in, that of the 50 people in the study, most of which have been in longer than I, they have only seen 1 reaccurance. Now that's exciting.

I would suggest that anyone that has HNC should look into Iressa. a U Of C study recently concluded using Iressa for reaccurance with mixed results. It seems to be working on "maintenance" but not as well on reaccurance.

Thanks again,
-rh


SCC 1.6cm Right Tonsil 10/3/03, 1 Node 3cm, T1N2AM0, Tonsil Removed, Selective Neck Disection, 4 Wks Induction Chemo (Taxol,Cisplatin), 8 Weeks Chemo/Radiation (5FU,Hydroxyurea,Iressa), IMRT x 40, Treatment Complete 2/13/04.
41 Years Old At Diagnosis
#15400 05-09-2004 08:22 AM
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Hi Rob,

My mom is doing okay. The big plus is that her scans are clean! I am extremely grateful to everyone at the U of C. The issues we are currently dealing with are pretty bad depression and getting her to eat. It's a tough road, but she's weathering the storm. My mom is in her 70s and, like everyone, went through a tough regimen -- but she got through it. That's the encouraging thing for me and anyone else who has faced or faces oral cancer. Now we are getting her through the after treatment hurdles, but each day is one day closer to recovery -- and that's a good, good thing.


Mom's caregvr. DDS failed to dx 01/03. Dx Stg IV SCC 05/03. Induct. chemo, IMRT, 5FU, H, Iressa, Neck disect, radiation. Dad's caregvr. Dx 01/04 Ext. Stg SCLC. Mets to liver/bone 08/04. Died 11/12/04. Mom tongue CA dx 06/13, hemiglossectomy (80% removed) 08/13. Clean margins and nodes, but PNI. 6/15/15: Tongue CA at base of remnant tongue. Declined further tx; hospice.
Died 10/13/15. What a long and difficult journey.
#15401 05-10-2004 03:43 AM
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Posts: 218
Robr Offline OP
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Didier,

Please let me know if there is anything I can do to help. I bounced back pretty fast. I guess I was lucky.
I talk with people I went through treament with me who are still having a hard go of it.
I remember the depression though, very well. For a couple of weeks after the treatment I would cry at the drop of a hat. I am a 6.0 200lbs 41yo male that barley cried at my moms funeral. But after the treatment my kids would say something cute to me as kids will do and I would go in the other room so they couldnt see me and have a meltdown. I am glad it didnt last too long. Zoloft helped me out a lot. I am off it now but it really worked well to ease the depression.

Anyway. I hope she can beat it. I am sure time will help.

Go bless.
Robert


SCC 1.6cm Right Tonsil 10/3/03, 1 Node 3cm, T1N2AM0, Tonsil Removed, Selective Neck Disection, 4 Wks Induction Chemo (Taxol,Cisplatin), 8 Weeks Chemo/Radiation (5FU,Hydroxyurea,Iressa), IMRT x 40, Treatment Complete 2/13/04.
41 Years Old At Diagnosis
#15402 05-10-2004 03:58 AM
Joined: Dec 2003
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Robert,

I am (was) a 200 (165 now) lb 48 year old and after the year with my terminally ill mother, I cry when I watch Montel Williams. I believe one of the roughest days of my life was sitting down with my boys (13 and 15 now) and telling them about the cancer. All through my treatment I didn't care how bad I felt, I went to open house at their schools, I took them and picked them up at school every chance I could and I made it to football, band, etc. I even worked directing traffic with my youngest for the Christmas Parade and Methodist Men's Pancake feed. I'm glad they didn't notice the tears, as you describe, from time to time when I sometimes felt this could be the last Christmas, awards banquet, etc. I just blamed it on the Salagen or something in my eye, even though I'm sure they really knew. I will never be able to work the 70-80 hour weeks away from my family that I used to.

Thanks for reminding me how important our families really are to us.

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
#15403 05-10-2004 04:41 AM
Joined: Aug 2003
Posts: 1,627
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Ed and Rob,
I slept alot during my radiation but mine was during the summer so the kids were out of school. I will always feel like that was a blessing to us. I could sleep a good amount of time but still be up and about to keep the house reasonably normal. I remember Open House, during the summer, for my 10 and 11 year old. I had the "lobster look" going on, half my face burnt bright red. My face and neck were still quite swollen from my surgery and I still had a hefty limp from the removal of the bone from my leg. I was quite a sight! But, I put on my "mom" outfit (i spend 99% of my time in sweats but have one skirt!)and off we went to open house. This was a new school for us and the looks I got were pretty overwhelming.................to everyone except my girls. They didn't notice and didn't give a hoot. I was mom, no matter what I looked like at the time. My 10 year old, Samantha, was walking with me last week through the grocery store and I noticed her looking at my neck alot. She finally smiled at me and said that my neck "doesn't look mad anymore".
As I've said before, my fear has always been about my children. If this cancer takes me I will have the easy job, to die and go to God. My children and my husband will be the ones left to deal with it all...........without me. That is the thought that wakes me up at night sometimes to a gut wrenching fear. It's that thought that has made me assist my husband in taking on more of the "emotional" side of parenting. If I go, I will make damn sure that my family is taken care of before I'm called home. My husband is learning how to be a pretty awesome mother! Just a safety precaution.............life is a dangerous career, lol.
Live everyone.............hug the kids..............get silly with the spouse..........and cry when you need to.


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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