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shannette22 #163733 04-07-2013 04:16 PM
Joined: Mar 2011
Posts: 1,024
"OCF Kiwi Down Under"
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Well said Paul.
Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
PaulB #163747 04-07-2013 06:51 PM
Joined: Mar 2008
Posts: 3,082
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Brandi
As you can see ,the recent posts validate my position that the majority of OCF just cannot understand what your father and I feel. Please let him know that he is not alone in his feelings. We have had posters get the PEG "just in case" and they never need it. People vary and this will not be the last time a majority dismiss the needs of a minority. Probably a good thing your father does not post,,or else he might react as I did and relaunch the PEG wars. In a way, I am glad that I did not find OCF when I was getting my first treatments since I probably would have dismissed this wonderful caring community as narrow minded bigots unable to acknowledge that many doctors advocate against a PEG. As it was, I could say, well it worked great for me and that's a fact
Of course, it turns out that the minority of us who went thru without a peg were mostly gentle souls who did not want to cause dissension. So I spoke up loud enough for all of us
Charm


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
shannette22 #163765 04-08-2013 09:22 AM
Joined: Mar 2013
Posts: 40
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I do believe what Paul said--it all depends on each person's specific circumstances. I think the main reason my Dad wouldn't get on here is because he doesn't want to be comparing his situation to any one else's. He is the type who doesn't like to "take people's word" for things. He just has to try something out himself before making a decision. And, like I said, it isn't that he is 100% against having one--he just wants to try to get through this treatment without one. Just one less procedure for him to go through and one less thing for him to deal with. He starts back up with radiation today. 3 weeks left. I'll let you know how it's going. smile


Brandi, daughter of:
Jack, age 69, non-smoker, BOT primary, Stage 4, HPV+
1/28/2013: Surgery. All cancerous masses removed. Dad is CANCER FREE!!!
2/26/2012: Beginning of TX. Weekly chemo: Carboplatin and Taxol. Daily RT (about 40 total)
4/25/2013: Will be last day of TX, both chemo and RT
shannette22 #163770 04-08-2013 09:54 AM
Joined: Jun 2007
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Administrator, Director of Patient Support Services
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Best wishes with everything!!! Im sure everyone in yoru family is anxious for this whole thing to be finished so your father can return to his regular lifestyle.

Good luck!


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
shannette22 #163771 04-08-2013 10:02 AM
Joined: Mar 2013
Posts: 40
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Yes, Christine. He said he wants a burger so bad! We told him we'd catch him up on his eating as soon as he is able to!


Brandi, daughter of:
Jack, age 69, non-smoker, BOT primary, Stage 4, HPV+
1/28/2013: Surgery. All cancerous masses removed. Dad is CANCER FREE!!!
2/26/2012: Beginning of TX. Weekly chemo: Carboplatin and Taxol. Daily RT (about 40 total)
4/25/2013: Will be last day of TX, both chemo and RT
shannette22 #163786 04-08-2013 11:38 AM
Joined: Nov 2006
Posts: 2,671
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Posts: 2,671
Hi Brandi - Looks like your Dad is coming down the home stretch with Tx getting close to being over! My son is in the "no peg" group but when the doctors mentioned the peg, we hadn't found OCF yet. My son, my daughter and a nurse friend of mine were all there at the meeting with the Cancer Team and they left it up to Paul whether he wanted it. Your mention of your Dad wanting a burger so bad struck a chord with me thinking about mhy son's sore mouth and taste problems during Tx. One day I saw him getting very close to his chicken broth and smelling it. I assumed he thought something was wrong with the broth but when I asked him about it, he said he had discovered that he could really enjoy the smell even though he could not taste and that smelling was a lot like the pleasure one gets from tasting. Don't know if this would work for your Dad in the same way or if it would just be painful for him to see the burger and not be able to eat it. Just thought I'd mention it in case it's something to try - or not.


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



shannette22 #163901 04-10-2013 12:24 PM
Joined: Dec 2010
Posts: 5,260
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"OCF Canuck"
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Hopefully your dad gets through this all and it sounds like he has the gumption to do so. I think pegs are a tool to be used if necessary. I personally had one as I wasn't really given a choice. It was standard practice at the hospital, and the told me they wanted me to have one. I didn't have to use it, but it was there if I needed it. Well all in all it was useless to me as I wasn't able to tolerate the feeds and took everything by mouth. I could afford the weight loss, and lost about 20 lbs. The best part was the psychological boost I got from having it removed 2 weeks after finishing treatment.

best of luck.


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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