| | Joined: Jan 2009 Posts: 476 Platinum Member (300+ posts) |  Platinum Member (300+ posts)
Joined: Jan 2009 Posts: 476 | Hi Samantha and welcome. So sorry you have to be here but so happy that you found this site and Christine, she's the best! It breaks my heart to hear how young you are and to be battling this and all you have been through. It sounds through your post that you have a great, positive attitude. You are fortunate that you are being treated at the best of the best - Johns Hopkins. Good luck with your upcoming surgery and I will definitely keep you in my prayers. Hugs
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: Dec 2010 Posts: 62 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Dec 2010 Posts: 62 | Hi Samantha! Sorry to find you here but welcome to our community! In addition to your terrific attitude you also have Christine and the fabulous folks at Johns Hopkins on your side. The best of the best!!
Sending positive thoughts, prayers and hugs to you as you face this upcoming surgery.
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 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2009 Posts: 875 | Hi Samantha:
I am so happy you joined the Forum - you have already gotten messages from some of the members, and it makes us all happy to be able to try to help you by offering experience, encouragement, advice, and PRAYERS. Consider Christine your mentor - she has been through so much, and her biggest goal is to help others. Please keep us informed on the Forum because as you can tell, we care for you and your sweet little girl.
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: May 2010 Posts: 224 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: May 2010 Posts: 224 | glad you found this, i could have sworn i found you on here though and started talking to you on fb, but you probably never posted on here before.
I never did say that it couldn't be cancer, I said that I didn't think usually came back that quick and that the soonest i had heard of was just a bit under a year, but I am sorry that it is cancer. Makes me sad that you are going through this and you are a few years younger then I am.
I know you will pull through this like you have the rest of your surgeries and treatments. You are a very strong woman and have a great family full of support to back you. You also have your amazingly beautiful daughter to fight extra hard for.
I will keep you in my thoughts but I know you will pull through this just like you have the rest of your battle!!
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: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Samantha,
I am so sorry you have to deal with all this at such a young age but it seems to be happening more often. You should be in good hands at Johns Hopkins. Good luck on your upcoming surgery and hopefully this will be the end of these reoccurences.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | | Joined: Aug 2010 Posts: 157 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Aug 2010 Posts: 157 | No! This is absolute f!%@ng!!! bullsh@t!
Someone needs to really challenge these tobacco companies ok! As said in another post the OC patients are getting younger, and I am finding more and more that are or were smokers. CHRISTINE! You are a goddess, you know the people at TRUTH and as a conspiracy theorist and MJ user myself I think tobacco companies are doing whatever it takes, even if it means adding more crap to their recipe of destruction.
Samantha, you kick ass! My doctors came to the conclusion that it was my smoking and heavy drinking that caused this. Is there enough research on energy drinks as well, just knowing more younger folk drink em, as I used to, even with my vodka. I so wish we could cause the downfall of their products, flavored this and that, friggin rappers promoting for them. It sickens me, and I wish would have stopped. Between my love Korinne, family and a very bold message from Christine, I QUIT! I even held on to one last smoke for a while and was convinced by the OCF to flush it, and I did. Samantha, youre tougher than I am...F%@K Cancer!!! You can follow my journey on youtube as well if you care to, Cancer Fight Log. I was 27 at Dx, get the list from Christine, you can friend the most of us on FB.
Your Friend,
Nathan
SCC left lateral tongue, left neck dissection. 2 nodes positive. 3 All Clear then ITS BACK 8/23/11 Shows 1cm in tongue in CT SCAN, Radial Free Arm Flap with Radical Neck Dissection 9/20/11 , All Nodes Negative, But Tongue Tumor Poorly Differentiated. Awaiting next step in treatment on 10/5/11... RIP Nate 7/28/12
| | | | | Joined: Mar 2011 Posts: 5 Member | | OP Member
Joined: Mar 2011 Posts: 5 | Thank you all very much. I am very happy that I found Christine B and this site. I know having so many people who know what its like to go through all that I have and am going through will be a huge help to me. I will hopefully not only be able to get help from but hopefully I may be able to offer some help to others as well. | | | | | Joined: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2006 Posts: 756 Likes: 1 | Hi Samantha,
Welcome to OCF! I truly wish that you did not need to be here, but it is the best place for support and information on OC!
I had OC twice and three surgeries so far (plus radiation). I had a biopsy a few weeks ago that showed moderate dysplasia, so I�m going to have another surgery in April.
I see you were treated at Johns Hopkins? Who is your doctor? I started seeing Dr. Wayne Koch at Hopkins last year and he will be doing my surgery in April. Great hospital and doctor!
I will keep you in my prayers. You are way too young to have to deal with this. By joining OCF, you will have people from all over the world praying for you and offering support and advice.
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: 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 | Hi samantha... I'll echo almost everyone else, sorry you have to be here but it is a great and supportive group so I'm glad you are.. I'm fairly new as well. but if I can help in any way please pm me. It's terrible that you have had to go through so much especially with such a young family to care for, but you are young and have an amazing attitude so that will help you get through the hard times. I. The interim, take care of yourself and enjoy your time with your children, that is the best therapy.
Hugs, healing and prayers to you.
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: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: May 2009 Posts: 1,412 | Samantha,
So glad Christine told you about this forum. You will have a lot fo support here. I have not been through as much as you have, but I do know how hard it is with young children. Your post made me cry. I will be praying for you, and glad you friended me on facebook. I will also be praying for that little one you have and your family. Keep us posted.
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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