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#159330 12-23-2012 05:12 AM
Joined: Oct 2012
Posts: 33
Katie B Offline OP
Contributing Member (25+ posts)
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Contributing Member (25+ posts)

Joined: Oct 2012
Posts: 33
I had my 2nd opinion appointment with a fabulous radiation oncologist at Sloan Kettering in Basking Ridge. I couldn't get an appointment in the city until the middle of January and time is of the essence so I went to a doctor in NJ, who reminded me of a friends mother. She completely agreed with the other physician, who left a little to be desired as far as his bedside manner is concerned. She knows him and said that although he is arrogant and socially awkward he is correct in his opinion. I told her in a perfect world she would be my radiation oncolgist but I am very pleased with my ENT and medical oncologist at Morristown so I will stay there.

I can't tell you how relieved my mother and I were to hear that we can now go forward with my treatment plan. She confirmed that I should get most of my taste back! This made my mother cry in relief. I really feel for her; I wouldn't want to see my children go through this or any serious illness. My poor mother! She's been through enough in this lifetime. My doctor said I will lose about half of my salivary gland function, so eating bread will probably never happen again. And my teeth will suffer the consequences of not having saliva to clean them. It is what it is. As long as I'm alive and can eat something!

I had my PEG tube and chemo port placed on Friday. I will be getting 35 radiation treatments and chemo every week. On Thursday I had a biopsy of some suspicious white patches on the surgical site taken. I'll get those results on Monday. I fear it is residual cancer, which is why they moved the start of treatment from January 2nd to December 26th.

I saw the MO nurse who gave me Rxs for Zofran, Compazine, and Ativan, which I hear help a lot. I'm going to fill those ASAP.

I had no idea the feeding tube was going to hurt this much. It's like I had the c-sections all over again, and the only comfortable positions are laying flat or standing straight. Apparently I got a lot of Twilight anesthesia (I remember I kept waking up and saying "knock me out!") so I pretty much slept most of the day. Yesterday the visiting nurse came and checked me out. She was supposed to teach me how to flush my tube but couldn't because the hospital didn't send me home with a syringe. So someone else will come over with that in a couple of days. She took the bandage off and I caught my first glimpse of the device going into my stomach and good God I had to avert my eyes. I really, really, want to feel better before I start to feel crappy from the radiation and chemo. I just want to feel better than I felt before all of this mess started. I didn't feel badly on Friday morning. I long to feel like my old self again.

I have to send an email to my cancer angels who have offered to drive me for treatment when I am not able. I have to coordinate a schedule so everyone has a day they take me.

I am ever so grateful for the countless people who have made us food; I will need more meals made for sure. I am touched by all of the cards I keep receiving in the mail, the calls, emails, and for all of the religious types who pray for me. My mother-in-law is in town and I hope to take her to mass tomorrow. Even though I'm not religious, going to church cannot hurt (as long as I'm on Percocet).

I am beginning to get anxious and scared for what awaits me. I am thinking of all of you strong and brave survivors who have already been down this road or who, like me, are about to start this wicked journey. May we all be strong and healthy in 2013 and beyond.


10/2/12 Surgery Dx Stage II SCC RLT
11/12/12 Further tongue resec and SND. 3 of 22 lymph + SCC Stage IVa
11/22/12 Hospitalized for infection incision at neck
12/5/13 PET scan tumor at BOT
12/26/12-2/27/13 RT and Cisplatin
4/1/13-5/17/13 3 rounds of Cisplatin, Taxotere and 5-FU
7/19/13 Pet Scan possible recurrence
8/23/13 2nd op at MSKCC, CT Scan
8/31/13 MRI. Both show sizeable mass
9/11/13 CT-guided needle BX + SCC
10/1/13 Erbitux, Cisplatin and Taxotere
2/14/14 Passed away
Joined: Jun 2007
Posts: 10,507
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 7
Katie, wishing you all the best with everything you are facing. Glad to hear you have gone ahead with the feeding tube, its a useful tool.

We are here to help guide you thru your treatments. Stick with us and we will provide info and support to help get you thru everything.

Best wishes!!!


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
Joined: Dec 2010
Posts: 5,264
Likes: 5
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
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"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,264
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Hugs Katie you'll do fine!


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: Jul 2009
Posts: 1,409
Patient Advocate (1000+ posts)
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Patient Advocate (1000+ posts)

Joined: Jul 2009
Posts: 1,409
Katie, thinking of you. As Cheryl says, you'll do fine.

Courage.


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18

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