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Alpaca Offline OP
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Three treatments down. Staff is lovely but I haven't had the opportunity to ask these questions:

Why is a bolus used on my scar?

Why do I have a CT scan every week?

(The explanations given so far have been brief and I've been too busy preparing for and getting over that damn tongue plug to ask them to expand on it:)

Christine's milkshake, one a day?


1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
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Patient Advocate (old timer, 2000 posts)
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Is it on the scar or mask? I understand, the rubber bolus is to increase the radiation dosage to the area. During CT simulation, a wire is placed along the scar, and bolus is placed along there, but I never had a bolus with IMRT or Proton Therapy, wire marking, yes. From what I understand, cancer tends to return at the surgical line.

I don't know why you have a CT every week, if its part of the trial, monitoring the tumor response or checking the mask alignment and is a CT simulation.

The tongue plug is to keep your tongue still, out of the way, during radiation,

I would ask. Now everyone probably everyone wants to know for sure. Take care, and good luck.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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Administrator, Director of Patient Support Services
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Its ok to drink more than one a day of the giant choc peanut butter milkshakes. Sometimes I would have 3 a day and never gained an ounce. Right now your body is burning up calories so fast it wont hurt to indulge a little.


Christine
SCC 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 smile
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Alpaca Offline OP
"OCF Down Under, Kiwi"
"Above & Beyond" Member (500+ posts)
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Thanks Paul. I asked today and got exactly the same answer. They had explained it to me initially but I didn't grasp it. I think they're probably checking alignment with the CT but will ask on Monday. (Starting to get the hang of this RT game.) They're very scrupulous about alignment which is reassuring:)

And thank you Christine. I've got most of the ingredients lined up. Forgot to buy peanut butter! I've been adding cream, sour cream and cream cheese to my soft meals ... delicious ... but even at this early stage I'm not putting weight on. I'm a buxom lass so have a reasonable buffer but will not count on that. I love what Cheryl or someone else said: hydration, nutrition, pain control. I'm keen on getting through this with as little trouble as is humanly possible and I'm so grateful for every piece of advice.


Cheers
Maureen


1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
Joined: Apr 2013
Posts: 319
Platinum Member (300+ posts)
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Joined: Apr 2013
Posts: 319
Maureen, you've shown the right (survivor's) attitude since your first post, you'll get through this fine.

Good on ya, Lass!

Bart


My intro: http://oralcancersupport.org/forums/ubbt...3644#Post163644

09/09 - Dx OC Stg IV
10/09 - Chemo/3 Cisplatin, 40 rad
11/09 - PET CLEAN
07/11 - Dx Stage IV C. (Liver)
06/12 - PET CLEAN
09/12 - PET Dist Met (Liver)
04/13 - PET CLEAN
06/13 - PET Dist Met (Liver + 1 lymph node)
10/13 - PET - Xeloda ineffective
11/13 - Liver packed w/ SIRI-Spheres
02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node
03/15 - Begin 15 Rads
03/24 - Final Rad! Woot!
7/27/14 Bart passed away. RIP!
Joined: May 2013
Posts: 63
"OCF Kiwi Down Under"
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Posts: 63
Yes the bolus is to increase the radiation dose and the weekly CT scan is to ensure everything is still aligning correctly. I had exactly the same questions.


39yr old female, DX BOT SCC Stage IVA (T1N2bM0) HPV+
28 May 13 - Pharangoscopy & tongue biopsy
29 May 13 - BOT Surgery & right ND (lvls 2-5)
31 May 13 - Hemorrhage, emergency trach, critical care
BOT clr mgns, 9/67 nodes & extracapsular extension
Finished chemo (cisplatin) & 30 rads
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Hi Maureen - in the beginning of treatment there were several questions I asked of the doctor during my weekly doctor day visit. The first time I asked, he answered, but not as much detail as I wanted. So, the following week I asked again and specifically for more detail in his answer. He gave me what I wanted just fine. More important, every question I asked after that day I got the more detailed answer.

I later learned that many patients don't really want to know much about their cancer or treatment, they just don't care. So, when questions are first asked many doctors try to give brief answers. If a patient is really interested in all this stuff the doc will go into more detail, but often you have to ask for that extra detail.

Asking for extra information is just being a good advocate for your own treatment. Doctors appreciate a patient who is involved in her own treatment, ie a good advocate; so they won't have a problem with giving more detailed answers.

take care

Tony


Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)

09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good

Joined: May 2013
Posts: 134
Senior Member (100+ posts)
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Posts: 134
I remember my first meeting with my oncology team leader. He described my tumor and then starting talking about the treatment plan. When I heard the word "chemo", I mentally checked out. I don't remember a word he said after that. I think they can tell by the look in your eye that you've had enough for one sitting. You are about to spend every weekday with a member of the team so there will be other opportunities to share info.

That (not telling me everything up front) used to tick me off until I spoke with an oncology nurse from another office. She shared that very early in her career she went through the plan in detail with a patient who shortly after committed suicide. Clearly this person had other very serious emotional issues but it changed her thinking regarding discussions of treatment. My team played it perfect: I was always told the truth, it was given to me when I needed to know it and they answered any questions I asked. Looking back I can see what a balancing act that is!


Dx March 2011 via FNA (49 yrs old)
SCC BoT
HPV+ exact strain unknown
Stage IVa T3N2cM0
Cisplatin x 3, IMRT x 40 (7267 cGy)
One node removed post-treatment (rad dmg)
Clean PET 10/28/11
Swallow therapy

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