| | Joined: Jul 2012 Posts: 3 Member | OP  Member
Joined: Jul 2012 Posts: 3 | Hi. My name is Irina. My mom has just been diagnosed with SCC of the floor of the mouth on July, 10. She is in Kiev, Ukraine. She has been smoking for almost 30 years.
Till yesterday , I did not even know that this type of cancer exists. Her stage is 1 T1NoMo.
I am in an awful state of mind at the moment. Disbelief , fear...
I decided to come here to read your stories to see how I can help her in this fight that she is about to start.
I wish all of you, of us, to stay strong and to win!
My mom, who is 63, was diagnosed with SCC of the floor of the mouth , Stage 1 T1N0M0 on July, 10 2012.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 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: 7 | Welcome to OCF, Irina. Sorry your mother has been diagnosed with oral cancer. I hope she will take this opportunity to quit smoking for good. Oral cancer is a deadly disease and smoking will only make things worse including the chance of a recurrence. I was a smoker too and I threw my cigs out the window on my way for a feeding tube consult. Havent smoked since and that was a little over 5 years ago.
She will need your support to get thru the treatments. Im so glad you have found the forum to help you both. The best thing I can tell you is to take her to a large cancer center where they are familiar with treating oral cancer. Nutrition and hydration will play a huge role in how easily she gets thru this. Try to get her used to taking at least 48 oz of water and 2500 calories every single day.
Best wishes with everything!
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 2012 Posts: 3 Member | | OP Member
Joined: Jul 2012 Posts: 3 | Dear Christine,
Thank you for your reply. Any advice is so VALUABLE!!!!!
I am here, in the US at the moment and she is in Ukraine, so thousands and thousands of miles are between us, but she is not alone there. My brother and her sisters are with her. I will definitively let her know everything you told.
Tomorrow she is seeing a doctor at Kiev Oncological Hospital and we will know what the next step for her will be.
Thank you again. Be blessed.
My mom, who is 63, was diagnosed with SCC of the floor of the mouth , Stage 1 T1N0M0 on July, 10 2012.
| | | | | 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 | Let us know what the outcome of tomorrow's visit is. If the staging is correct then her cancer was caught at a early stage and that is a positive. I echo Christine's comments re the best possible cancer center AND quiting smoking.
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: May 2012 Posts: 114 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2012 Posts: 114 | So sorry to hear about your mom, Irina. Cancer is so scary and the thought of losing a parent can be overwhelming. I am glad she has your bother and sisters there to help her get through it, and I am glad you have come here to find support and information so you can help her from afar. We are all here to help so lean on us when you need it!
Amy CG to mom Janet - diag w/ early SCC 8/11-surg w/ rad neck dissect & graft from arm/thigh 9/11-evid in nodes tx 6 wks rads (5/wk) w/cistplatin (1/wk for 6 wks) began 11/11-wk or 2 break 12/11 due to severe side effects-done 1/12- 3/23/12 mets to liver lung bone-hospice 4/7/12-lost fight 4/22/12
| | | | | 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 | She's very fortunate it's an early stage - hopefully they will treat it quickly. I echo everyone else's statements -  welcome and sorry you have to be here
Last edited by Cheryld; 07-12-2012 07:03 AM.
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Too bad about your mom getting this nasty stuff. Keep us informed. How good are the over there with treating Cancer?
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: Jul 2012 Posts: 3 Member | | OP Member
Joined: Jul 2012 Posts: 3 | Today was the day when my mom had her ultra sound made in her lower body (this is a usual procedure there). Wednesday is another day for Utrasounds - her head neck will be checked.
I have a question for all of you: have you ever tried B17, B15 treatment? I will appreciate any input.
My mom, who is 63, was diagnosed with SCC of the floor of the mouth , Stage 1 T1N0M0 on July, 10 2012.
| | | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2011 Posts: 805 | Hi Irina,
We all understand the fear and anxiety you have. It is so scary in the beginning, whether you are the patient or the caregiver. I think being miles away is even harder.
Please know that we are here and will help with all we can. You have come to an amazing place for support and good advice. It makes it a little easier to talk to people who have been through it too.
I have not heard of the B17 B15 tx. Maybe others have.
Best of luck to you and your family as you begin the journey.
Kathy
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
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