| | Joined: Mar 2011 Posts: 130 Likes: 3 Senior Member (100+ posts) | OP  Senior Member (100+ posts)
Joined: Mar 2011 Posts: 130 Likes: 3 | I'm heading down to Boston for my first radiation treatment in a couple hours. I will read ANYTHING that ANYONE is willing to send me as far as advise on how to get through this. I'm am so glad that I found this site and all of you wonderful strong people. I want to be back to striper fishing this Summer "as if nothing happened".
Lump in left side neck discovered Sept 2009
Misdiagnosed & FNA inconclusive
Large lymph node removed Nov. 2010 SCC and HPV16 pos
PET pointed tonsilectomy Feb. 2011
1ml tumor left side tonsil
Rads scheduled March 14th 2011. 2X36 GY's (72)
CarboTaxol once a week X 4 or 5 starting 4/5/11
No PEG
| | | | | 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 | Are you driving yourself? I found that i was ok to drive the first week and after that my son took over and drove me. It was 45 minutes each way to the hospital where I was treated. A couple times the American Cancer Society helped by providing a driver for me. So, if you havent already made alternative arrangements for transportation it might be something you would want to look into.
If anyone has offered their help to you, write down their name and number. Tell them you will call on them when the time comes. You will need help in a couple weeks.
Good luck today!
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: Mar 2011 Posts: 130 Likes: 3 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Mar 2011 Posts: 130 Likes: 3 | Thanks Christine. My folks have been great and I will be driving down (2 hours each way) today, staying with a friend (45 mins away) for the rest of the week, and taking a furnished apartment right across the street from Mass General starting next Monday.
Lump in left side neck discovered Sept 2009
Misdiagnosed & FNA inconclusive
Large lymph node removed Nov. 2010 SCC and HPV16 pos
PET pointed tonsilectomy Feb. 2011
1ml tumor left side tonsil
Rads scheduled March 14th 2011. 2X36 GY's (72)
CarboTaxol once a week X 4 or 5 starting 4/5/11
No PEG
| | | | | 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 | Phew! I was worried you would be commuting everyday back and forth. Nobody could keep up with that while going thru treatments. Keep a close eye on yoru nutrition on your travel days. Make sure you dink lots of water and get at least 2500 calories daily. Good luck!!!
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: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2007 Posts: 939 | [quote=MaineWill]Thanks Christine. My folks have been great and I will be driving down (2 hours each way) today, staying with a friend (45 mins away) for the rest of the week, and taking a furnished apartment right across the street from Mass General starting next Monday. [/quote]
Can't say enough about how glad you will be to be near your treating facility for the duration of treatment. The first week or two will be a piece of cake but after that, everything is a monumental effort and if you have a health crisis, your docs and hospital are very near by.
Good luck with all you are facing,
Deb
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
| | | | | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | Simple - don't forget to breath. Take it one day at a time. Bring your own music. Ask for blankets if you are cold (they like to keep the machinery cool). I took antianxiety meds and slept through many of my treatments. The first 3 weeks should be a cookie cutter then the side effects will start to kick in.
In spite of what a few nut cases say, you will have no sensation of much of anything during the actual treatment. Be nice to the radiation therapists - they didn't give you cancer (and truth be known, they feel bad about it - I know, I asked them). ALWAYS check the computer monitor to insure that YOUR name is on the treatment plan. One gal here got irradiated for prostate cancer because the previous patient didn't show up. Oops!
IMPORTANT - Insure your neck is clean and free of any oils or any other substance. They can act as a bolus and increase the skin damage to the neck at the beam entry points.
Have your meds ordered and lined up BEFORE you need them. You really don't want to take a trip to the ER on a Friday night...
I commuted an hour to an hour and a half (each way), 5 days a week in heavy SF Bay Area traffic to go to a CCC (there is a local radiation treatment center a block from my house)- my wife or other voluteer drivers drove me - I didn't. If you have a car get a handicapped placard. After three weeks you'll be crawling into treatment on your belly.
Last edited by Gary; 03-21-2011 12:04 AM.
Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
| | | | | Joined: Mar 2011 Posts: 130 Likes: 3 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Mar 2011 Posts: 130 Likes: 3 | Thanks Gary, Hey....should I have dry mouth after only 4 treatments? Not totally dry but definatley noticable. Maybe I should ask my RO about where he is aiming the thing.
Lump in left side neck discovered Sept 2009
Misdiagnosed & FNA inconclusive
Large lymph node removed Nov. 2010 SCC and HPV16 pos
PET pointed tonsilectomy Feb. 2011
1ml tumor left side tonsil
Rads scheduled March 14th 2011. 2X36 GY's (72)
CarboTaxol once a week X 4 or 5 starting 4/5/11
No PEG
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Hey my throat is dry after 2.... I think it's possible
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: 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 | You may start to see some changes but "dry mouth" usually is one of the last things that we are left with and usually that is post Tx. My taste/dry mouth stages were 1. started to have my taste change within the first 2 weeks. Things either had little or no taste or even a bitter taste. 2. Next came the over production of thick mucous which started late in the Tx and lasted for a few weeks. 3. Then as the thick mucous finally went away I was left with the dreaded DM which was horrible for the first 4 months and gradually improved until my 15th month post Tx when I saw the biggest improvement in saliva/taste and then it got a tad better 24 months post Tx and I estimate today, as I was at 24 months, I am appx 95% pre Tx normal.
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: Jan 2011 Posts: 7 Member | | Member
Joined: Jan 2011 Posts: 7 | Will, I'm a "Maniac" also. But have been in California over 40 years now.
I started my radiation today, March 21.
My cheek is changing color already.
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