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Geri #88203 01-16-2009 03:46 PM
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Gary should be the one to answer the rad question but basically gy stands for a unit of radiation called a gray. One gray or gy is equal to 100 rads which I think used to be the way they expressed the rad units. SO 70 gy would equal the 7000 that his doc is talking about but I'm not sure where he's getting the 1600 from.

As far as the 3rd Cis, part of it will have to with how well he handles the 1st 2 because if he's really bad of they will not go for #3. I was borderline but they decided to torture me a little more. lol


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.
Geri #88204 01-16-2009 03:49 PM
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Geri,
The third ct Tx would have killed me for sure. I puked so much after the second ct that I polished my teeth, like glass, with stomach acid. Nothing worked, Zofran, etc. I ended up using compazine suppositories because I couldn't throw them up.

In the mid Tx point (3 weeks) I had a CT scan and the tumor had completely vanished - gone. It's pretty standard to have a mid point ct to make adjustments in the radiation treatment protocol. Whether that factored in I don't know. I think it was my over the top side effects from the Cisplatin.

Hearing damage from Cisplatin is very uncommon (actually rare) and some ringing and buzzing may be normal as your eustacian tubes get clogged up, etc. A head cold can cause many of the same symptoms. Especially as you get older, almost all of us have some tinittus from all of those rock concerts, etc. My ears are ringing right now. Being a musician hasn't helped. BUT - if you notice and sudden changes report this to your doctor immediately. I had many problems with fluid buildup which magnified the tinittus problem. Strangely, subsequent post Tx audiology tests actually showed an improvement in my midrange hearing response.

The bloodwork numbers will naturally crash as a result of treatment but only a doctor can say for sure whether this is an anticipated change or abnormal. My numbers were off for over a year. Fortunately one of the redeeming things about Cisplatin is that it doesn't mess with the bone marrow very much, unlike some other ct does.

In reference to the radiology numbers. It appears they are giving you the numbers in rads rather than Grays (Gy). 100 rads=1Gy. They haven't used "rads' in years. The following link explains the concept of ionizing radiation pretty well.

http://oregonstate.edu/dept/radsafety/training/safety_info.php

Last edited by Gary; 01-16-2009 04:02 PM.

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)
Gary #88205 01-16-2009 03:54 PM
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The hearing loss may be very uncommon but I suffered permanent (so far at least) high frequency hearing loss so just like we talk about percentages, it doesn't matter how uncommon it is if your the one that looses the hearing so just be on the lookout.


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.
Geri #88206 01-16-2009 03:55 PM
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Geri

The rad doc can see if the chemo/rad is working. They have screens that I used to walk by and saw my multi colored pics on it. My rad doc would mention that it was working and the tumors were smaller. I am not sure if thats from the pictures or by his exams, I only know I had 2 chemo doses.

I did question my doc several times about why no thrid dose and was told it wasnt necessary. One thing which I will never know the answer to is if I had been given the 3rd dose of chemo whould I have still gotten another tumor? Thats something that I used to think about, but it really doesnt matter, it happened and I have survived. I find it much easier to focus on the fact that I now have clear scans and am doing great. I dont want to worry you in any way, but I wanted to share this in case your doc would tell you no 3rd dose. Ask questions, find out why. Its so much better to fight it once than twice when rad usually isnt an option nad any surgery would be more difficult to heal from.

Hope the appointment was a good one and progress is being made.


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
ChristineB #88213 01-16-2009 05:53 PM
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Some of the newer RT systems like Tomotherapy and Trilogy take a daily CT scan. In addition to helping get precise alignments it lets the RO see daily changes.

Apparently these lower power daily scans don't have the definition of full power CT scans, but the ones the RO went over with me seemed fairly well defined (kind of like mini PET scans of my head and neck).






Don
TXN2bM0 Stage IVa SCC-Occult Primary
FNA 6/6/08-SCC in node<2cm
PET/CT 6/19/08-SCC in 2nd node<1cm
HiRes CT 6/21/08
Exploratory,Tonsillectomy(benign),Right SND 6/23/08
PEG 7/3/08-11/6/08
35 TomoTherapy 7/16/08-9/04/08 No Chemo
Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11

ChristineB #88214 01-16-2009 05:56 PM
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Hi, Thanks for all the feedback. Today, the RO prescribed some pain meds so we would have them ahead of time. I need info about what meds you all started with. Our prescriptions are for the Fentanyl patch and oral morphine solution.

These drugs seem so powerful that it's scary. Are there intermediary drugs to use before the pain is at it's worst? I didn't get a chance to ask the RO about meds not quite so strong. Aren't there pain meds you can crush and put into the Peg tube? I've read that the patch can be hard to come off of and I'm a bit freaked out about these heavy narcotics. Please post with some info.

They also put Richard on Diflucan for the beginning of thrush. He's being hit so early with these problems that it can get discouraging. Luckily, we are still out walking every day and he's eating like a champ. My stomach is in a knot most of the time because I want to stay on top of things, but have no control. That's the hardest thing for both of us. I know you all know what I'm talking about and I'm counting the weeks until this hideous treatment is over and the healing begins. Any info would be greatly appreciated. Geri


Geri-CG to husband Richard, 62 yrs old. Former smoker, quit 30yrs ago, light drinker. Dx after tests with BOT T1N1M0. Tx to start by end of Dec. Seven wks IMRT with 2x Cisplatin-2x Erbitux. Peg in 12/08- removed 4/21/09. Looking good so far. Clear Pet &MRI 8/2/09
Geri #88215 01-16-2009 06:12 PM
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Geri

I used the Fentanyl patch and had no trouble coming off of it. I started using it in early August and I took myself off of it in mid-October when I came home from the hospital. They can step him down in dosage too to make it easier. It did not bother me a bit. I was also taking some oral medications until the pain from my tumor was so severe that they had no effect on it. I did not use any oral morphine, just what they gave me in the hospital. I did have a rinse that was Benadryl/Lidocaine/Mylanta that I used for the pain in my mouth. It is a swish and spit medication that numbs the mouth. I actually just dumped this down the drain today when I cleaned the fridge in the hope that I will not need it again.

I hope this helps. I do not know anything about Thrush. As a matter of fact I will have to look up what it is. Sorry.

Patty


48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
Geri #88227 01-16-2009 07:22 PM
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"Love those pain meds because they can turn an ordeal into an inconvenience -- Of course, there're prices to pay in the form of constipation (they're giving me plenty of stool softener) and getting off the stuf (intend to taper down much better this time around!)."

You do have to love when you can get them...easier said than done...


Dianne..treatment at cc at Victoria Hospital, London, Ontario...insulin dependant, Surgery Sept 8/08 Tracheotomy,composite resection and bilateral neck dissection, left radial forearm free flap... T2N0 squamous cell carcinoma. No radiation A little over 2 yrs clear YAY
Good1 #88229 01-16-2009 07:35 PM
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Geri,

I had hydrocodone (liquid and tablets) to take when I was at home and tramadol to take when I was at work for the beginnings of pain and discomfort. I worked up until my 4th week of IMRT and then hit a wall, but I have a very physical job where I have to talk alot! I couldn't explain things to my patients because my throat was sore and my voice gave out. I also had some stuff called MD Anderson mouthwash that was swish and swallow but it made me too sleepy to take while I worked ( 4 times a day).
Then when I stopped working they put on the Fentanyl patch, 25mcg then 50mcg for awhile then back down to 25mcg. I did have terrible withdrawals when we finally took the patch off, but it was after treatment had ended and I was not eating like I should because I didn't have to weigh in every week.
At the time I didn't
think to take the hydrocodone to help taper, I just took the patch off and thought I would be fine. Just talk to the docs about tapering the patch when you get to that point.( later
found out that there is a 12.5 mcg to step down to ) I wore it until mid December while recovering ,too.
Cold always felt good on my throat so I mixed ice cream in my Boost and Ensure plus and I liked raspberry tea up until my taste changed, now I can't tolerate sweet stuff. And you are right, you and hubby will be closer than ever during and after this journey. You guys are in my prayers.


59 yr old female Rad Tech T2N0M0 lt tonsil
IMRT x 35, no surg, no chemo.
Last treatment 11/18/08. Dealing with L'Hermittes sign presently.
Oct 2010 swollen nodes on rt. side. Biopsy: positive SCC
Jan.20,2011 radical neck dissection(6 hrs.) tonsillectomy on rt. finished 30 treatments Apr.27,2011.
Gary #88237 01-16-2009 08:34 PM
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My first round of treatment I had a terrible time getting off the Fentanyl patches. I was on 100 mcg's every 48hrs. I'm back on them again (same dose) for this round too.
The first time I suffered through a 'step down' program that lasted about 6 weeks and was awful. I have often said that the withdrawls were worse than the chemo and radiation (as bad as they were), and for me it really was true.

This time I'm already planning on discussing with the doctor a different plan - like where you're hospitalized for a short period but you come off the narcotics very quickly, over a few days I believe. I'm not sure what's available there but I know I'm not up for doing the 6 weeks of hell I did the first time.....wow.




Age 41 - Stage 2 SCC tongue Dx 2/06. Cisplatin x3, IMRT x35. Mets to neck node discovered 7/07. RND 40 nodes removed, margins not clear. Cisplatin, Taxotere, 5-FU Fall 07, then IMXT/Erbitux for 7 wks. Inoperable mets to both lungs and pleura Dx Oct'08. 4 cycles Carboplatin, Erbitux, 5-FU so far.
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