| | Joined: Jan 2009 Posts: 476 Platinum Member (300+ posts) | OP  Platinum Member (300+ posts)
Joined: Jan 2009 Posts: 476 | John and I just returned this past Saturday from our post-poned cruise on RCCL Liberty of The Seas. We had originally booked this cruise for this past May to celebrate my daughter's graduation from college and my son's 21st birthday. When John was diagnosed we pushed the cruise to August. We had a wonderful time enjoying beautiful, calm waters, sunny days with 90 degree temps and not a drop of rain. We have so much to be grateful for and to celebrate. Even with eating more than usual, John didn't gain an ounce. I know it will take time. John had a CT Scan with IV contrast of his neck and chest the week before we left. We had decided to wait until we returned to find out the results. John called the doctor without me knowing and got the results. He told me once we were onboard the ship that the CT Scan was clear. YEAH!!!
I sometimes feel like I'm holding my breath but it is getting a little easier to breathe and relax. I can't thank everyone on these boards enough for all the support and information during our journey. There is so little information out there about Oral Cancer and I myself was very clueless when John was diagnosed. I continue to read the messages every day and pray for everyone dealing with this terrible beast. Again thank you. Wanda
Wanda (47) caregiver to husband John (56) age at diag.(2009)
1-13-09 diagnosed Stage IV BOT SCC (HPV+)
2-12-09 PEG placed, 7-6-09 removed
Cisplatin 7 weeks, 7 weeks (35) IMRT
4-15-09 - treatment completed
8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear
4-2013 - HBO (30 dives) tooth extraction
10-2019 - tooth extraction, HBO (10 dives)
11-2019 - Left lateral tongue SCC - Stage 2
| | | | | Joined: Jul 2009 Posts: 453 "OCF Down Under" Platinum Member (300+ posts) | | "OCF Down Under" Platinum Member (300+ posts)
Joined: Jul 2009 Posts: 453 | Wonderful news Wanda and you've gotta love the location he chose to tell you the good news. I'm really happy for both of you and your family.
Wendy
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: Dec 2008 Posts: 126 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Dec 2008 Posts: 126 | Wanda,
Congratulations on your wonderful news! Getting good news following the first scan after treatment is such a relief. Both Richard and I felt we could finally, after all the horrendous treatment, have that cloud hanging over us be gone. What a sense of relief and thankfulness. We all will be living with reoccurrence anxiety for the rest of our lives, but as time goes by with clear scans, hopefully this will fade. All I know is that we are not going to take anything for granted and for now, at this point in time, all is well and we are very thankful.
I'll never understand why the cancer returns for some people while others recover and go on with their lives. None of us can predict the future so for now we live with our "new normal." Ditto to your comments about this forum. I also check in to see how everyone is doing. I really can't imagine how we would of made it through this without the support and knowledge learned here. I will be eternally grateful that I found this site right at the beginning.
Richard hasn't been able to gain any weight either. Before treatment he gained 10lbs and that is exactly what he lost. He is at the same weight he was when he was diagnosed, so he didn't really lose much. He's back to all normal activities, working a bit and lots of walking and hiking. He still has very little saliva and it takes forever to chew and eat a full meal, but there are no complaints because we are very thankful that he is able to eat. Amazing, the everyday things that we used to take for granted! Again, congratulations on your wonderful news... 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: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | I went over an entire year post Tx before I started to put some weight back on.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2007 Posts: 939 | Wanda,
Congrats to the great news on John and on your cruise on Miss Liberty. Didn't you just love that ship?? We cruised her last year as a celebration of Bill's good recovery and had a great time...our son and DIL came with us. And now............
WE HAVE A LITTLE SOUVENIR FROM THE LIBERTY CRUISE:
Our Granddaughter Haley Elaine Born February 25, 2009
Here's to your next cruise!
Deb
Last edited by debandbill; 09-03-2009 08:31 AM.
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
| | | | | Joined: Feb 2009 Posts: 88 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Feb 2009 Posts: 88 | WOW I like this forum thread - Good news all around. Guess we need to go on a cruise as soon a we can. And congratulations Grandma Deb! Wendy are you ready to be come a mother? LOL is that what LIBERTY does to us.
Bonnie
CG to daughter Brandy age 31 initial dx 10/06
SCC T4N0M0 with bone invasion upper maxillary
Surgery 10/06
CT's clear for 2 years
2nd recurrence - Laser surgery 1/09 dx
Tumor board - No surgery to invasive for QOL
35 IMRT 3/30/09 Completed 5/15/09
8 tx Erbitux 3/24/09 Completed 5/6/09
| | | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | | "OCF Canuck" Patient Advocate (1000+ posts)
Joined: Sep 2006 Posts: 1,357 Likes: 5 | Congrats on the great scan news and on a wonderful trip. It has been such a cool summer here that anywhere that had 90 degrees consistently gets my vote!
Enjoy each day - don't push your life off until tomorrow - your life IS today!
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | | Joined: Aug 2008 Posts: 238 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Aug 2008 Posts: 238 | That's wonderful news, Wanda. And what a great way to break the news to you so your vacation was even more special than it would have been. Take care and enjoy!
Nancy T
CG/Mom: 5 1/2 years SCC upper palate,4 recurrences, surgeries, chemo & radiation. Mom went to Heaven 1/21/11.
| | | | | Joined: Jun 2009 Posts: 51 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jun 2009 Posts: 51 | Congrats on your good news! Glad you had a wonderful time celebrating it!
Caregiver for Husband, Dana, age 52
DX 11/08, SCC right tonsil, Stage 3
RND, right tonsilectomy, Peg tube installed 12/08
Cisplatin X3, IMRT X35, last TX 3/09
CT scan 5/09 clear
PEG removed 8/27/09
1st PET scan clear 9/10/09
Minor surgery to repair PEG site 9/17/09
| | | | | Joined: May 2008 Posts: 357 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: May 2008 Posts: 357 | What a great way to find out the good news. You must have felt like he just proposed to you!
Here's to a long life of clear scans.
Marlene
Marginal mandibulectomy 6/17/08 resulted in DX of Stage I SCC - gingiva (3 mm) right mandible, buccal side. Clear margins. Occasional social drinker. Smoked last cigarette in 1979. Clear pet: 12/08; 7/20/09. Yay!
| | | | | Joined: Jan 2009 Posts: 225 "OCF across the pond" Gold Member (200+ posts) | | "OCF across the pond" Gold Member (200+ posts)
Joined: Jan 2009 Posts: 225 | That's brilliant news. I saw the photos on FB, you all look like you had a fabulous time. Such good news.
Girlfriend to Martin 49 years old at diagnosis
Diagnosed with SCC unknown primary June 2008.
Cancer found in single node Stage N2A (3 to 6cm).
Tonsilectomy 16th june, Radical modified neck dissection left side 30th june.
30 TX radiotherapy ended 9th October
First comparative study scan came back clear
| | | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: May 2009 Posts: 1,412 | Such wonderful news. I know the relief you must be feeling. Hearing that the scans came back clean is wonderful. Thanks for sharing.
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
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