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#137147 - 07/22/11 09:32 PM Re: Wondering if it's worth it [Re: AnneO]
morgan44 Offline
Contributing Member (25+ posts)

Registered: 07/08/11
Posts: 33
Loc: VT
Thanks to everyone for recent comments. HAPPY FRIDAY! The last day of my first week of treatment, and so far I'm doing fine. Again, the radiation was a struggle the first 'round' because my back was killing me (I think I mentioned this). But we finally found a comfortable position, and now I just wait out the 15-20 minutes until all the whirring stops. Then I'm done, in and out in a half-hour. I'm slightly more tired by mid afternoon, with a headache which is sometimes fierce, but I've found the best solution for that is just a cold pack alternating with my neck brace.

I do know that the entire treatment schedule isn't apt to be as smooth sailing as this first week, but I'm a determined young(!) woman who has always compromised with myselfafter mentally analyzing all the pros and cons to find the best approach to any of the more distasteful events in my life. My mantra has always been "I can stand anything, as long as I know it's temporary." Works every time, once I make a decision.

So keeping that in mind, I'm determined to avoid the PEG as long as possible; so far I have only slight burning in my throat and seem to manage eating creamed soups using whole milk and a dollop of butter with crackers, spinach quiche, and other soft foods verrrrrry carefully, with the assist of the ol' Magic Mouthwash about a half-hour before so my throat isn't completely numb but just relaxed. I also do jaw exercises which help prevent throat muscles from getting stiff. Also drink at least two Carnation Instant Breakfast a day, iced tea and ginger ale. My "menus" have become an adventure!

The Erbitux worked well, no side effects at all, and yes I'm using the recommended soaps and lotions to hopefully avoid a rash. I have six more of those treatments, once per week, and have finally found time to catch up on crossword puzzles which used to be a hobby until the Internet came along.

So far, so good. But don't be surprised if you don't see me back in a week or so kicking and screaming!

My best to all of you. And thanks for your help.

Maggie

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#137149 - 07/22/11 09:37 PM Re: Wondering if it's worth it [Re: morgan44]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 4605
Loc: Toronto canada
Glad you are doing so well... Keep on Trucking!!!
_________________________
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

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#137154 - 07/22/11 11:25 PM Re: Wondering if it's worth it [Re: Cheryld]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 7942
Loc: PA
Maggie, sounds like you are doing fantastic! Im so happy that you have decided to go thru with being treated for OC. Its a long road but you are not on it alone. We will help you when you need info and support. Keep up eating as much as you can and drink lots of water. Here is a list of easy to eat foods that might be helpful to you.

http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=94621#Post94621
_________________________
Christine

SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 rad end 9/27/07, no caregiver
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
total of 185 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 hospital extended stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

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#137158 - 07/23/11 12:05 AM Re: Wondering if it's worth it [Re: ChristineB]
AnneO Offline
Gold Member (200+ posts)

Registered: 12/30/10
Posts: 282
Loc: Kansas
Maggie,
Thank you! You have given me a needed lift. It most definitely will be worth it to you and anyone who follows your story.

You're like me in that I decided I was going to try to avoid using a PEG. Again, not against it, the thought of it just made me sick, I can be kinda squeamish. So at the end it was taking me well over an hour to eat food, but by then there was no point in getting a PEG. That's when those liquid supplements become invaluable.

Again, thanks, and TGIF.
Anne
_________________________
SCC ventral tongue 9/2010, excisedw/clear margins:8 X 4 mm, 1 mm depth
Neck Met, Oct/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc
IMRT & 6 cisplatin 1/20/11-2/28/11
GIST tumor sarcoma, removed Sept,'11,no TX needed
Non smoker

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#137161 - 07/23/11 12:16 AM Re: Wondering if it's worth it [Re: AnneO]
ConnieFL Offline
Platinum Member (300+ posts)

Registered: 04/16/09
Posts: 329
Loc: Fort Myers, FL, Lockport, NY
Morgan...So glad to hear from you and you're doing well. Reading your post put a smile on my face, Yes It's Worth It....Keep up the good work and keep us posted.

Best Wishes,
Connie
_________________________
SCC. of the left lateral tongue, anterior two thirds, T1 possibly a T2.
Left partial glossectomy, left selective neck dissection 4/21/09. Nodes clean, No Rad, No Chemo.

CT Scan 9/11 clean, CT Scan 9/12 clean


Moffitt Cancer Center in Tampa, FL. A+.

My hometown Lockport, NY.




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#137195 - 07/23/11 03:48 PM Re: Wondering if it's worth it [Re: ChristineB]
morgan44 Offline
Contributing Member (25+ posts)

Registered: 07/08/11
Posts: 33
Loc: VT
Originally Posted By: ChristineB
Maggie, sounds like you are doing fantastic! Im so happy that you have decided to go thru with being treated for OC. Its a long road but you are not on it alone. We will help you when you need info and support. Keep up eating as much as you can and drink lots of water. Here is a list of easy to eat foods that might be helpful to you.

http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=94621#Post94621


Thanks so much for the list! Many of the items listed are those that I regularly eat, but I'm always looking for hints to diversify a rather bland diet. I often just wing it with cream soups. Bought a fresh cauliflower the other day, cooked it to death with potatoes in half-chicken broth/half water, mashed it all together, then added whole milk and enough shredded cheddar to thicken. It was absolutely yummy, and will even make that when this ordeal is over for dinner guests! Today I'm going to do the same thing, but with squash.

As ya'll can see, I haven't yet lost my appetite.

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#137196 - 07/23/11 03:54 PM Re: Wondering if it's worth it [Re: AnneO]
morgan44 Offline
Contributing Member (25+ posts)

Registered: 07/08/11
Posts: 33
Loc: VT
Originally Posted By: AnneO
Maggie,
Thank you! You have given me a needed lift. It most definitely will be worth it to you and anyone who follows your story.

You're like me in that I decided I was going to try to avoid using a PEG. Again, not against it, the thought of it just made me sick, I can be kinda squeamish. So at the end it was taking me well over an hour to eat food, but by then there was no point in getting a PEG. That's when those liquid supplements become invaluable.

Again, thanks, and TGIF.
Anne


I think my aversion to the PEG is that I don't want to become reliant on it. My eating habits are such that if I skip meals (dieting, back in the day, for instance), I start feeling queasy, and if I know in my head that "something else" is feeding me, I'll feel even more nauseous. That, and the fact that I believe any invasive surgery, no matter how minor, is risky if there are alternatives. My oncs are fine with that, and my weight and other labs taken once a week to monitor.

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#137197 - 07/23/11 03:57 PM Re: Wondering if it's worth it [Re: ConnieFL]
morgan44 Offline
Contributing Member (25+ posts)

Registered: 07/08/11
Posts: 33
Loc: VT
Originally Posted By: ConnieFL
Morgan...So glad to hear from you and you're doing well. Reading your post put a smile on my face, Yes It's Worth It....Keep up the good work and keep us posted.

Best Wishes,
Connie


Thanks. Now if it would just cool off. I'm so glad God invented air conditioners, but He/She needs to put a bug in Mother Earth's ear that enough is enough.

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#137260 - 07/25/11 04:47 PM Re: Wondering if it's worth it [Re: msmac]
morgan44 Offline
Contributing Member (25+ posts)

Registered: 07/08/11
Posts: 33
Loc: VT
I had the first infusion of Erbitux last Wednesday, and had no complications at all. (Posted more in your forum.)However, this weekend, I suffered with severe headaches, which will be discussed this afternoon. That was following the first full week of radiation and the Erbitux, so it's possible the latter is what caused it. I'm used to the mouth pain but not these debilitating headaches. Stay tuned, folks.

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#137285 - 07/26/11 12:06 AM Re: Wondering if it's worth it [Re: morgan44]
Pam M Offline
Supporting Member (50+ posts)

Registered: 11/06/09
Posts: 91
Loc: Kentucky
Waiting for the next installment. Hoping your team came up with something to combat the headaches.
_________________________
44 at 10-26-2009 Dx; SCC, T2N2b, St.IV BOT; Rt. Tonsil out; PET 11-12-09 (3 spots); 3 rds Cisplatin, Taxotere and 5-FU started 11-19-09; PEG 12-24-09; 7 wks chemo-rads done 03-16-10. 06-28 CT/PET watching 1 node; PEG out; 11-15 CT - larger; 11-23 PET activity up; mrdc 12-21; 04-01-11 CLEAN SCANS!

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