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#48418 07-01-2007 03:31 PM
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PeteyB Offline OP
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Hello Everyone

Thanks for the kind words and advice. I will call the MO first thing in the morning.

Lee33

I never heard about sunburns and cancer. I have not had IMRT yet. I know that after radiation you are very sensitive to UV rays.

Could you explain further please.

I grew up in florida and I would spend 5 to 8 hours a day at the Beach. I am very tan as I work outdoors.

Just the center of my nose and the tops of my ears got burned. I think it was because of pruning and painting for 3 days straght from dusk to dawn and looking up all the time.LOL

I just had to laugh at a "flashback" I just had.
Does anyone remember a "Three Stooges" episode(late 1960's) where some guy hurts his neck and the DR tells him to keep looking up & DO NOT look down?

Well he leaves the DR looking up walking down the street and people start following him, all looking up. It was only a short 2 minute sequence but at the end there were about three hundred people walking with him, all looking up. (Like the people following Forrest Gump running) laugh

Anyway, I'll post what the MO says tomorrow. I will never loose my sense of humor. I love to laugh, and make people laugh...

Prayer and Best Wishes....Petey

PS: Please see if anyone can help "BarbT" she wrote a topic in "Coping/Anger & Fear" titled "At a loss for what to do..." It was her 1st post here. I was going to "transfer" it to Introduce Yourself like Davidcpa did for EZJim....But her post "was" in the correct place..(only 2 responses???)


DX 3-21-07 L tongue,SCC Stage IV (T3N2MO) TX Slash/Burn/Poison Method.
***Rapid Aggressive Recurrence 8-4-07 with same DX/TX. Life does not cease to be funny when people die any more than it ceases to be serious when people laugh. Never Give Up! ****UPDATE**** Our dear friend Petey passed away, RIP 9-2-07
#48419 07-02-2007 04:06 AM
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Hey Petey.
Not sure what the bumps are either. I'll keep thinking positive thoughts for you and praying too.
I have to say something here....it absolutely amazes me that you are feeling so well that you are able to physically go outside and do all that hard labor!! While it may not be what the docs have ordered-it certainly shows how strong your mind is, and we all know that positive thinking is our strongest weapon!


Donna
CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
#48420 07-02-2007 04:12 AM
Joined: May 2007
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Petey

Ready the post I did in After Treatment about
Sun Protection. The IMRT will affect the way your skin is able to handle sunlight. My mom battled this for 60 years after having radiation before I was even a glimmer.

Kevin


18 YEAR SURVIVOR
SCC Tongue (T3N0M0) diag 06/2006.
No evidence of disease 2010
Another PET 12-2014 pre-HBO, still N.E.D.


�Remember to look up at the stars and not down at your feet. It matters that you don't just give up.�
Stephen Hawking
#48421 07-02-2007 04:42 AM
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PeteyB Offline OP
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Hello All

Thank You Donna & Kevin.

I would also like to thank Markus for his PM.

I have a RO appointment for tomorrow (Tuesday) where they will "Take Pictures" at 10:45 AM.

Hopefully it is nothing alarming.

Anyway, I'm leaving now to continue my work on my properties now ARMED with the knowledge of the UV rays. At about noon the one gable I have left to paint will be in the shade. :rolleyes:

I will update you all tomorrow after I return from my RO appointment.

You People (Is that politically correct? eek ) Are The Greatest!!! xoxo Petey smile


DX 3-21-07 L tongue,SCC Stage IV (T3N2MO) TX Slash/Burn/Poison Method.
***Rapid Aggressive Recurrence 8-4-07 with same DX/TX. Life does not cease to be funny when people die any more than it ceases to be serious when people laugh. Never Give Up! ****UPDATE**** Our dear friend Petey passed away, RIP 9-2-07
#48422 07-02-2007 10:24 AM
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Hi Petey,
My property WAS sold on the British equivalent of the courtroom steps--my ex-husband's alcoholism! i didn't even know it had happened, and was initially heartbroken--I had worked so hard on and for that house before having to move out and it was ALL my money that had gone into it and was supposed to be my children's inheritance!
Three years on, am living in utter simplicity, with cancer, and frankly enjoying every minute of every day I get that's good now!
And don't beat yourself up--you've been a brilliant and comforting advocate for a lot of people over the last few months--no-one DESERVES cancer and no one person's is 'worse' than anyone else's!!
You look after yourself!
On the subject of the sun--have been told I must stay out of the sun or wear total sunblock--in view of the floods here, that's not a current problem!!!

Hope all goes well at the DR, and don't forget to remeber all your good points--okay??
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!
#48423 07-03-2007 03:30 PM
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PeteyB Offline OP
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Hello All

I went to the RO today.

I am starting a new topic as I begin radiation with my first TX 7-5-07.

It was a very disturbing day today which is not unusual for me except that it was more so than most.

I just spent 5 hours researching and responding to a few posts. I will start writing it now after I make my 4th cup of coffee.


DX 3-21-07 L tongue,SCC Stage IV (T3N2MO) TX Slash/Burn/Poison Method.
***Rapid Aggressive Recurrence 8-4-07 with same DX/TX. Life does not cease to be funny when people die any more than it ceases to be serious when people laugh. Never Give Up! ****UPDATE**** Our dear friend Petey passed away, RIP 9-2-07
#48424 07-03-2007 04:03 PM
Joined: Jun 2007
Posts: 510
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PeteyB: Will you please hurry up! I've been waiting all day to hear any news from you. It's after 11 pm in N. C. Seriously, praying all is well! Let us know when you can!


CG to 77 y/o hubby;SCC Alveolar Ridge; Wake Forest Baptist Hosp surgery: 07/19/07; bi mod radical resection/jaw replacement;
T2 N2-B M0 Stage IV-A
28 IMRT +
6 Paclitaxel/Carboplatin
Getting stronger every day!
#48425 07-03-2007 06:44 PM
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Posts: 525
PeteyB Offline OP
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Hello Everyone


I will try to make this brief and to the point which is usually not my style.

BRIEF AND TO THE POINT TURNED INTO A RANT SO I 'M LEAVING IT IN THIS THREAD. I NEED TO GET OUT OF THIS RANT FAZE. I CAN'T BELIEVE IT'S 1:25 AM AND I HAVE BEEN ON THIS COPUTOR SINCE 4:42 YESTERDAY.

EMMYLOU1951, SORRY, YOU MISSED ME BY 20 MINUTES, ITS 10:44 PM IN SEATLE! eek


The two nurses at the RO who attended me were very polite and professional.

The empty table with my mask on it looked very intimidating. I took off my shirt as requested and laid on the table and they put on my mask and I was secured to the table.

They did not dodge but rather referred all my questions to the nurse who would see me at my first TX in 2 days. Just taking pictures they explained.

They put tape on different parts of the mask and put markings on the tape, drew lines on my neck and chest as I was moved in and out of the machine, chatting numbers to each other and making calculations out loud while then marking the tape.

They were in and out of the room while they took their pictures and made their markings. All went well and smooth. She said she had to put 1 small dot tattoo on my neck that would be permanent.

When completed I asked more questions. Told them of the 2 new lumps on my neck, explained that I could not sleep and could I get a RX for sleep. Again I was referred to the next visit in 2 days.

I guess I should have demanded more but I did not. So here I sit, dead tired and wide awake. Yesterday I drank no caffeine sprite at home and only water all day and still could not sleep so I said heck with it and am drinking coffee.

The disturbing part was when they handed me my schedule for July and I inquire about the IMRT.

This machine was an external beam radiation/linear accelerator and not an IMRT.

While researching here I find this is old technology and not as precise but still widely used. This upset me. Them I asked about amophosetine and they said who told you that.

I explained the OCF and they still referred questions to "next visit".

On top of all my other troubles, no meds of any kind, dysfunctional home life, busting my but to fix up my home and two properties for a "fire sale" everything hit me at once.

Upon returning to my properties the once a week vegetation pick up only picked up only 1 of 5 huge piles. I called the Town of West Palm Beach and they said only 1 pile per week.

I said that I have put absolutely nothing out for 4 months but was billed for you just driving by. I was then informed that I was in a city code violation for the rubbish even though they have it a law that your trees stay trimmed during hurricane season. (June 1 to November 30.) They fined me $100.00 last month as my trees we not trimmed. Now I trim them and they won't take them away. 1 pile per week. So unless I pay someone to haul them I will be fined $100.00 dollars a week until only one pile remains.

They are lucky or I am lucky that we had a torrential down pour as I was so infuriated that I was going to put the rubbish in the middle or the street and go home.

If this would have been the old drunken Petey I would have went and got a case of Bud and laughed at every branch I pulled into the street.

If not for the downpour and lightening I was going to have a go at it sober. Maybe it was God letting me know to let it go.

After busting my but for 3 weeks and giving my properties great curb appeal I have 4 huge piles of rubbish with potential buyers coming by daily.

It is as though nothing will work for me about anything. It seems like I'm cursed even though I have done everything in my power to salvage my life.

I was truly at the breaking point today. Thank God it rained and lightening. Sorry to rant here but this is my only retreat at the moment.

I still have 15 days and I have several "sharks" waiting me out until I have to sell to them and they can pick up a quick $300,000 in equity, it was $450,000 before the market drop (housing).

I have been praying everyday. Doing the let go, let God attitude but still fighting for my life


DX 3-21-07 L tongue,SCC Stage IV (T3N2MO) TX Slash/Burn/Poison Method.
***Rapid Aggressive Recurrence 8-4-07 with same DX/TX. Life does not cease to be funny when people die any more than it ceases to be serious when people laugh. Never Give Up! ****UPDATE**** Our dear friend Petey passed away, RIP 9-2-07
#48426 07-03-2007 09:44 PM
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Hello Petey its Karen, I am going to skip all of the me stuff for now(you can read that somewhere else). I am so sorry about the extra hassel you are having with your properties and stuff, but don't worry. Take a few small steps at a time- it will all pan out. My real concern is those bumps on your neck and chin. My dad got those after his first surgery and they were very painful and never went away. We never found out what they were and asked every visit. Toward the and of my dads illness like two of the bigger ones burst and sank in like a kind of abcess. The bump was still there, and big, but then had a big scab on it. Maybe you can have some kind of biopsy or something? Whatever it is have it looked at and watch for changes in size etc. Take care Karen PS Stress is not good for ANYTHING- find something that you enjoy and try to do it everyday.


karen and dad
#48427 07-03-2007 10:11 PM
Joined: Jan 2007
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Hi Pete,
I was treated in the UK where IMRT is not as widely available. I had a a large tumour removed from my tongue (about half visible tongue) and a forearm free flap op, followed by chemo and radiotherapy.
However, when I'd read up about IMRT, I asked why I was not being treated with it and was told that in my case, it was not appropriate as, as far as they knew, I was cancer free after the operation and so the radiation was aimed at a wider area where there may be malignant cells, rather than at a specific measurable tumour. It may be that I would not have had the oppportunity to have IMRT anyway and this was sugar coating for me, but I think that the information was correct! smile This might not apply in your case, but from what I have read about your treatment, I thought it might?

Left tongue SCC 3/4 Hemiglossectomy 30TxRtherapy with 6 weekly doses of cisplatin. Completed March 2007

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