| | Joined: Jan 2008 Posts: 26 Contributing Member (25+ posts) |  Contributing Member (25+ posts)
Joined: Jan 2008 Posts: 26 | I've added you to our prayer list at church. Thinking of you and praying for you and a speedy recovery.
Kim
08/24/07 Dx at age 44 never smoker, occasional drink
T1N0M0 G2
09/06/07 partial glossectomy(rt),neck disection (rt) 32 nodes clear
12/05/07 35 RTx w/boost, 63 GY, finished
12/28/09 PET/CT all clear!!
12/19/11 check-up, all clear - 4 years cancer-free now !!
| | | | | Joined: Aug 2008 Posts: 96 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Aug 2008 Posts: 96 | Christine,
You know that you are still in my thoughts and prayers everyday, and will be especially on Monday. Ron always had a white board with him in the hospital. It can be easily erased, etc. They will probably "cap" the trach at some point so you can try to talk. To tell you the truth, it was more frustrating for Ron because he still wasn't very easily understood, so he mainly used the white board. After his last surgery in Feb, he came home with the trach. That entailed quite a bit of work, between keeping that clear, feeding the PEG, keeping a schedule of all meds, etc. It was a lot. I ended up making a weekly spreadsheet on the computer and printed out quite a few weeks worth and we would cross things off as they were done, or wrote times of meds, etc. It really helped us remember everything. Please accept all the help that you can. I know you are strong and independant, but you need people who care about you right now. I wish I was closer, I would be honored to help you out. You are amazing and you will continue to be, I have no doubt.
Love,
Lori
Lori, cg to H Ron, age 56.
Stage IV Oral SCC-T1N2. Tongue resected and right ND 8/05. Teeth removed, PORT, PEG, IMRT x33, Cisplatin x3. Tx ended 10/05.
Recurrence 7/08 Stage IV. Surgery 8/30/08.
2nd recur. 11/08. 2nd surgery 2/2/09.
3rd recur. 4/9/09. Erbitux wkly. 5/09-?
Ron died 6/6/09.
Lori also passed away 8/20/11, colon cancer
| | | | | Joined: Dec 2008 Posts: 126 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Dec 2008 Posts: 126 | Hi Christine,
There's not really anything that I can say that's not already been said. Richard and I will be praying for you on Monday. Even though you have to go through the medical part of this ordeal alone, you will never be alone in spirit and faith. So many people will be thinking about you and praying for you. Please know what a comfort you have been to others with your encouraging posts and comments. God bless you and keep you safe...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
| | | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | Don't forget to ask for a Passy-Muir Valve for the end of your trach -- Helps make your speech more intelligible and you don't need to cover the trach to talk. http://www.passy-muir.com/
Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: May 2009 Posts: 1,412 | Will be praying for you for Monday. I have been praying for you a lot these past few days.
Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Christine, I wanted to put my post here and not one of the other sites. I will have me and my Pastor praying for you as we go to Pittsburgh in the morning. My mind will be there with you and encouraging you thru everything. If you see something funny looking, go ahead and laugh. It's just my image. I have sent a few of my angels to watch and help you. Your buddy JIM
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2008 Posts: 706 | So glad I got to see you and your family today. It was a great visit. Keep the faith-you are a strong, wonderful lady with alot to look forward to. I will be saying many prayers for you and your children. I will come to see you some time in the next week or so. Please give Travis my number in case he needs anything or just someone to talk to-I've been there so I can be helpful to him. I love you and will keep you in my thoughts.
Sue
cg to husband, 48 Stage 1V head and neck SCC. First surgery 9/07. Radiation and several rounds of chemo followed. Mets to chest and lungs. "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Went home to God on February 22, 2009.
| | | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | | "OCF Down Under" Patient Advocate (1000+ posts)
Joined: Aug 2007 Posts: 1,301 | Best wishes from me too!! Read your mini blog around 4 hours ago now so know that you have a lot more information on your procedure.
Also good that they will keep you sedated for a few days.
Looked like a great time spent with the family for the Travis's 20th birthday.
Great pics�.look forward to hearing how you are doing.
Love
Gabriele
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Christine,
As you know, I have a lot of family members praying for you. They will say extra strong "noisy" prayers (we do noisy prayers in our family. They seem to work)for you. Can't wait to see you on Saturday!! Stay strong and remember we are here for you. You have my number so have Travis call me if you need anything or send me a text.
Love,
Suzanne
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | OP Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Thank you for all the well wishes, angels and prayers, especially the loud ones  I need all the help I can get tomorrow. My doc is keeping me asleep for a few days while Im in ICU. Visitors are allowed after Thursday. Basically I will go into the OR and cry like I always do since Im scared. Next thing I know it will be Wed or Thurs. and I will wake up a new person. Boy, to think I used to complain about getting a cold. Wow, this sure has taught me not to complain about little things. I still consider myself lucky to be here and able to help others. Gsbe, Im going to take a picture too. I love your idea of the before and after shots. Ive taken a ton of pictures the past couple days. It was a great day seeing Suemarie, her daughter, and meeting her boys. What a nice family. We had lunch together after seeing the doggies. Sue....THANK YOU!!!!! I felt much more at ease after talking with you about Neil's recovery. This round is different for me. Its a huge surgery 10-15 hours. Many parts of my body will be affected. But...this time is different, I am strong now. For my second round I was still trying to recover from the chemo and rad treatments which had ended only 7 months earlier. This time I do not feel that bad, jsut sore jaw and ear pain. I am strong and although Im very very afraid, I feel confident going into it this time that I will be ok. My new motto will be .... I'LL BE BACK
ChristineSCC 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 | | |
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