| Joined: Jun 2007 Posts: 10,507 Likes: 6 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 6 | As Samantha's FB friends already know, the planned mandibulectomy for Monday has been cancelled. Her PET scan showed a second cancerous spot. With her permission, here are exerpts copied from her FB pages.....
Bad news... Waiting on the doc to call. Not sure what I should be thinking or feeling. The second spot in my pet scan was in fact cancer. So its spread to a couple places in my neck. The doc said surgery might not be a possible treatment anymore. Waiting for him to call to learn more...
So surgery is no longer an option... The cancer is most likely all through my neck and with surgery they could remove some of it but not all and it will just grow right back. Its really bad now. We are going to try radiation, some new chemos and hopefully some trial drugs now. I asked what my odds were, the odds r against me at this point... 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 | | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jun 2009 Posts: 875 | Samantha: I am so, so sorry, but pray the radiation and new chemo drums will kill the demon. Being young is a plus for you, so we'll keep praying for the best. Let us know on the Forum how you are doing and progressing. Not all of us use Facebook, and you are in the right place with the right people on this Forum to help you get through this. God Bless. Hugs to you and your sweet daughter, julieann
Julieann Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer | | | | Joined: Mar 2011 Posts: 5 Member | OP Member Joined: Mar 2011 Posts: 5 | I have only been fighting oral cancer for a year and a half now. Doesn't seem to bad but I am on my 2nd recurrence. My 2nd recurrence popped up only a month and a half after radiation and chemo. I don't understand how it came back so quickly but I was going to have surgery again. They were going to remove the tumor, redo my tongue for the fifth time, plus take out my jaw and any skin that was over the tumor. They were going to take it all. Then I get a call. The cancer has spread. They found two spots of cancer in my neck now. Which makes them believe the cancer has spread all through my neck. Surgery is no longer an option. Its spread to much and it will just keep coming back. I asked the doctor what my odds were, they aren't good anymore at all. The only thing we have left to fight this thing is radiation, any chemos we find that fight this thing and any new trials we can find. My chances have dropped so low and I am honestly scared to death. But I refuse to have fought this thing so much already, I refuse to let it win. I am going to beat this, I am only 22 years old and I have a 2 year old little girl. I have my whole life ahead of me and I have this child I have to be here to raise. Has anyone else gone through this? How many times has anyone here had to fight this thing? Who here has beat it without surgery? Is it even possible to beat it without removing all the tumors and things first? If you have gone through this and are beating it, what did you have done what kind of treatment or drug helped you beat this? If you have any information please let me know. If you like to just share your story with me please do.
Samantha Kemper | | | | Joined: Dec 2010 Posts: 62 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Dec 2010 Posts: 62 | Including you in my prayers, Samantha. Thank you, Christine, for sharing this.
Holding you close in my heart! Let us know how you are doing. Much love to you and your family, Catherine
Catherine, SCC floor of mouth DX 2010,unclear margins, PET scan clear, no chemo or rad,biopsy in 9/2010, 2nd excision 10/2010 didn't get all carcinoma in situ; partial gloss & excis. right floor 2/2/2011 margins clear. Part.gloss-10/5/2011 sev dys clean marg. HPV neg. Don't smoke or drink. SCC floor of mouth left side 4/2016. Dysp excis. rt palate 7/2017 Part gloss sev dys lat marg 2/2019 Part gloss free flap rt neck disc 5/2020 Part gloss bilat neck disc 7/2020 33 rad 3 cis.
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 6 | Samantha Im very sorry!!!! Ive gone thru it 3 times. There arent many members who have gone thru it more than 2 times. I would suggest going to another top cancer center for another opinion. They tests wont change but they may be able to get you into a clinical trial. Dont lose hope! 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 | | | | Joined: Jul 2006 Posts: 388 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jul 2006 Posts: 388 | Samantha, I am praying for a miracle for you. We are all here to support you through this. Part of this battle is the emotional drain of being "scared to death" that all have faced....it can be devastating, so hoping you find some good news from doctors that will bring you through this with positive results. Hugs, dear young lady.
Husband: 3 SCC gum and cheek cancers 2002, 2005, 2006: surgery only. Scans clear after removal of small, well differentiated, non-invasive cancers. No radiation. 4th SCC lip diagnosed 4/13/07 - in situ, removed in biopsy. More lip removed 2/8/08 - dysplasia. 2 Biopsies 3/17/09 no cancer (lichenoids)
| | | | Joined: May 2007 Posts: 132 "OCF Down Under" Senior Member (100+ posts) | "OCF Down Under" Senior Member (100+ posts) Joined: May 2007 Posts: 132 | Hi Samantha,
I've had 7 recurrences and had radiation and chemo twice. Most of my recurrences were caught early but I have twice had it metastise to my neck and jaw. The worst recurrence I had was a recurrence on my tongue in August 2009, where I could see the hole in my tongue grow almost daily. I had two partial glossectomies (the 2nd because of insufficient margins) and within 3 weeks of this surgery I had 6 cancerous nodes around my left jaw and in the right side of my neck. I had stabbing head pain and initially I was told that it was inoperable. To cut a long story short, after alot of experts looked at me and my previous treatments it was decided to remove as much of the 6 tumours as possible surgically and then reradiate. I had radiation twice daily (and Cisplatin 1 x weekly) over a 3 week period as an inpatient. My radiation oncologist later (after treatment) told me that he had rated my chances as less than 10%. He still likes to remind me, especially when I whinge about some of my side effects of radiation, that he never thought I'd be here to have this conversation with him. I'm still here more than 18 months later, albeit having just had freeflap surgery for a recurrence in my left cheek. I'm at home recovering from that now.
What you've been through already is unbelieveably cruel. I hope that there is a miracle out there waiting for you. Get another opinion as Christine suggested and you may just find a medical team who are willing to push the boundaries, or who are able to put you into a suitable clinical trial. Try to maintain a positive attitude and yes radiation can kill tumors without surgery. There are some on this site who have only had radiation and chemotherapy because of the location of their tumors and they are now cancer free.
I wish I had more to offer you. It's heartbreaking to see this disease hit someone so young and with so much to live for. My thoughts and prayers are with you, your daughter and family.
Sue G
55 y/o SCC LL Tongue 3/27/07 Part. mandibulectomy 9/2/07 Left ND 5/12/08 RT/Chemo Rec LL Tongue 07/09 Part gloss 8/5 & 8/25 Surg 10/28/09 re mets to R neck & L jaw RT & Chemo finished 12/22/09 PEG fitted 05/06/10 L buccal SCC 10/10 freeflap (forearm)surgery 2/28/11 L buccal and gingiva
| | | | 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 | Definitely time to explore other doctors and hear what they have to say. I agree that at time the doctors have to push the boundaries otherwise they don't learn and we don't benefit from that learning. I know they pushed the envelope with me to re-radiate and I am still here today.
I wish you and your family the strength you are going to need as you pursue the answers you need. Hugs and prayers to you.
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: Nov 2010 Posts: 167 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Nov 2010 Posts: 167 | Samantha - you're so right - you have too much to live for! You have a lot of spunk to have fought as hard as you have and to get up to fight again! I so admire your courage!
I believe that there is an appropriate course of treatment for you! Keep up the fight and know that you have many standing with you!
Jennifer (39) 02/10 SCCa Tongue & Base, HPV- 03/10 Partial Glossectomy & ND 11/10 Revision due to additional nodes 12/20-2/2/11 IMRT & concommitant chemo 2/11 PEG in 3/11 PEG out Back at work and feeling good 03/24/11! 12/20/11 - 9 month f/u PET/CT - all clear!
| | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | God bless, samantha - get a second opinion, you have too much to live for - fight!
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: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2006 Posts: 756 Likes: 1 | Samantha, I'm praying for a miracle. Get a second opinion. You are too young and have too much to live for. Don't give up the fight!
Susan
SCC R-Lateral tongue, T1N0M0 Age 47 at Dx, non-smoker, casual drinker, HPV- Surgery: June 2005 RT: Feb-Apr 2006 HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105! Recurrence/Surgeries: Jan & Apr 2010 Biopsy 2/2011: Moderate dysplasia Surgery 4/2011: Mild dysplasia Dental issues: 2013-2022 (ORN)
| | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | Samantha is at John's Hopkins I believe...the only place to go from there that's not a step back is MDA. Where prudence is always get a second, I don't believe she'll find any better care.
Samantha. To hell with the odds, they don't matter. Your spirit is prepared to fight this monster and you have a weapon in radiation so if you have a "why" to live my dear...give it hell. Focus on your why and hold to it.
Rage on young lady, rage on.
Eric
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | Keep up the fight, Samantha! We are all with you and sending love and prayers your way.
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.)
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