| | Joined: Jul 2009 Posts: 453 "OCF Down Under" Platinum Member (300+ posts) |  "OCF Down Under" Platinum Member (300+ posts)
Joined: Jul 2009 Posts: 453 | Barbara, please know that I am thinking of you. Like the girls said work out where you want to go on your cruise and do it. We are all here for you.
Wife to Steve 43. DX 5 May 09. T4N2MO SCC tongue, floor of mouth, lymph nodes & jaw bone
No surgery
Teeth removed 06/07/2009
radiation 13/07/2009 x 7wks
chemo 15/07/2009 x 3 Cisplatin
last TX 28/08/2009
25/11/2009 PET-lymph node activity.
08/01/2010 CT Scan-ALL CLEAR
03/03/2010-Peg removed
01/2013 left side of Jaw removed and replaced with pectoral flap.
23/12/2020 scan show lesion in tongue
01/2021 SCC stage 3 base of tongue diagnosed
01/03/2021 chemotherapy started.
| | | | | Joined: May 2010 Posts: 224 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: May 2010 Posts: 224 | this is heartbreaking to read! You are such a great woman and were so kind and supporting!! I wish I could do more then just say I am sorry about your diagnosis. You are in my thoughts and plan a vaca asap. My bf's dad went to hawaii with his wife and had a blast before he passed away. I am so so so so sorry to hear this!!
25/female at diagnosis
Dx;stage 3 SCC tongue 03/25/2010
Surgery 04/13/2010
Trach,ng tube, peg feeding tube
Hemiglossectomy, right side neck dissection, 40 lymph nodes removed. Free-Flap transplant to tongue.
30 rounds IMRT ended July 15,2010
| | | | | Joined: Jul 2010 Posts: 531 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2010 Posts: 531 | ok, i also haven't really been keeping up because I also have been under the weather and i was scared is all i wall say right now but omg, i have never met you either and only being on here for a short time, but i did a search to find out how you were doing...and did NOT expect that! I am soooo sorry...and please like they all said get another opinion or 10!there are way too m any stories i hear and just heard another one yesterday at the pharmacy about somebody being given months to live and they are still here 8 years later was the one told to me yesterday. So please stay positive, get some ass kickin boots on and please stay strong and fight this and hell ya go on that cruise! i'd join ya if i had the money...hell i'm sure everybody here would love to join ya, what a great idea! for of course anybody who can afford it. man I wish my ex retired, so i got his half of his pension already!  God Bless you and I will say a prayer for you also
CG to Ron
Out of Pain 4/3/13
4/12-lung and under chin growth no treatment
1/13/12 lung biopsy
6/11 recur 6/30 resection #2 Clear margins
Clear 12/10
Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out
RAD 30 8/10
DX 4/2/10 "Oral Cavity" T3NOMO
12/28/07 Non Hodg Lymph remission 7/08
passed away 4.3.15, RIP Ron, you are greatly missed
| | | | | Joined: Mar 2009 Posts: 147 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Mar 2009 Posts: 147 | There are not words to express how sorry I am for this shitty turn of events. It makes each one of us realize how quickly things can change. Take that cruise. Write/record your history...leave your life story in wrting and on recording for those future grandbabies. They will know and love you by your words. Get a few favorite stories that you would like to share with them and record them. They will then be able to hear their grandma read to them. They will know you! As with the others, I am here with a virtual hug for you. I hope you can feel it.
DX 2/10/09; Stage 1 SCC side of tongue; Partial Gloss; PEG in 3/3/09; 3 Cisplatin; 35 IMRT; PEG out 7/17/09; Eating via mouth and walking 3 miles/day 4 wks after treatment end. 50 pound weight loss; Clear PET 09/09 and 09/10
| | | | | Joined: Jun 2009 Posts: 440 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2009 Posts: 440 | I just heard Barbara, and I am left speechless. I am so sorry! My prayers are with you, ((HUGS)).
Dx 3/27/09 @ 28 years old with High Grade MEC T4N2M0
Elizabeth, 33, mother of 3 girls (4,7, &8yrs old)
3 rds of chemo(Carbo/Taxol)
Rt Mandibulectomy, rt fibular flap,& rt ND with trach, picc,& g-tube.
30 rds of rads with weekly cisplatin
SCANS ALL CLEAR!
OCF Regional Coordinator of San Antonio Walk
| | | | | Joined: Jul 2010 Posts: 531 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2010 Posts: 531 | and another thing bout recording something, i got that Hallmark Twas the Night Before Christmas recordable story book for my grandkids that I recorded reading it to them with a message at the end. Cuz you just never know...and this way yes they have Grandma's voice and saying Merry Christmas to them for the rest of their lives!
CG to Ron
Out of Pain 4/3/13
4/12-lung and under chin growth no treatment
1/13/12 lung biopsy
6/11 recur 6/30 resection #2 Clear margins
Clear 12/10
Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out
RAD 30 8/10
DX 4/2/10 "Oral Cavity" T3NOMO
12/28/07 Non Hodg Lymph remission 7/08
passed away 4.3.15, RIP Ron, you are greatly missed
| | | | | Joined: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,406 | Hello Barbara, I can't tell you how sad it made me to read your posts. As many have noted, there's not much we can say in words that will help. But we're all with you.
Sending love.
David 2
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 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Eric, this post really moves my heart and soul with feelings for others in our OC lives. Great Job Man and with so few words.
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
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