| Joined: Jul 2013 Posts: 2 Member | OP Member Joined: Jul 2013 Posts: 2 | Hi I am newly diagnosed - lump on throat biopsied malignant. Finding out Tuesday explanation of biopsy and treatment. It is my understanding treatment will be radiation to the throat and chemo later. Anyone have tips as how to deal with treatment side effects etc.
Thank you Connie
Connie M.
| | | | Joined: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2007 Posts: 939 | Connie,
Welcome to the boards and a great big sorry that you have to be here. A lot of folks will welcome you to our merry bunch and be here for sound advice. The most vocal of us will ask you where you are being treated as we hope that, if possible, people that join us with a positive biopsy will consult with a major Comprehensive Cancer Center.
My biggest advise right now is to take a few days and read, read, read all the topics on this board as well as the main OCF pages. While everyone is a little different, this will give you a good view of treatment modalities and various approaches to getting thru treatment and recovery. Once you have read a bit and hear from your doctors, you will have questions that we all can try to answer. We are not doctors but, we have been thru the gauntlet and have learned a lot from our experiences and from others here.
Best of luck as you start this journey.
Deb
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: 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! Sorry to hear of your diagnosis! You have found the very best place to help get you thru the next few months. We will provide you with current, correct medical info and lots of moral support.
You will soon become very busy with appointment after appointment, and doctor after doctor. What made it easy for me was to take a notebook and at every appointment get a business card and staple it to the back of the notebook. When ready to begin treatments, remove any cards from doctors who are not treating you. This makes it very easy for a caregiver to quickly find the correct doctor to call if you should need them down the road.
Right now you will want to eat like crazy. Its ok to gain a few pounds so dont worry about gaining weight. Right now that would be a good thing. Eat all your favorites as your sense of taste will probably be changing. Dont worry its only temporary. Also it may become very difficult for you to eat so you dont want to go into this craving your favorite Mexican dishes, enjoy them now.
Go see your dentist and get flouride trays made, this takes a few weeks so its best to get started right away. You will want a full check up and any questionable teeth will probably need to be pulled.
Get a full blood work done including thyroid. When your doc requests this, make certain he includes thyroid.
Stick with us and we will help get you thru this. Read and educate yourself. An informed patient is a smart patient! The main OCF pages are full of all the info you could possibly need to understand about this horrible disease.
Best wishes!!! 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: 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 there - chances are it wll chemo and radiation at the same time. You have one of the top CCCs in in the country - in your state - md Anderson - I would advise you receive treatment there of you can - this cancer can be tricky you want to deal with a team that sees it all the time - best of luck!
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: Sep 2008 Posts: 711 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2008 Posts: 711 | Hi Connie, welcome. If you have someone to act as caregiver for you, 2 heads are always better than 1 at doctor's appointments. There will be an overwhelming amount of info coming at you and i9t will be hard for you to remember all the questions you have thought of. Write down your questions and then have a 2nd pair of ears to pay attention and take notes. I thinki most of us have had chemo and rads concurrently. Best wishes to you.
David R. 65 yr old male non-smoker, light drinker, stage 3 or 4, depending on which doc you ask, scc rt. tonsil, 2 nodes, 7 weeks radiation and chemo. No surgery. Teatment ended 3/20/08. PET scan 8/08 showed no cancer. And now, as of oct, 2010, caregiver to wife, Linda, with breast cancer. May, 2013, Linda diagnosed with stage 3 ovarian cancer. Enuf already.
| | | | Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,291 Likes: 1 | Welcome Connie,
Sorry you had to join us but you are in good hands here. As stated start reading here, not doing wild Google searches. There is solid information here that is quite reliable and of course, many members here have been through the battles and survived, so lots of hands on experience so to speak.
Best, don
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | Joined: Aug 2012 Posts: 214 Likes: 1 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Aug 2012 Posts: 214 Likes: 1 | Welcome, but sorry your here. To get the most out of this forum, share as much info as you can. Odds are, someone here has gone thru what you a facing. The better the info you provide, the better the suggetions you will get. Good luck, Stay off Dr Google, and stay possive. Treatment is tough, but doable.
Hockey Dad 43, No smoke, Small BOT HPV+16 8/30/12 Biopsy found SCC in Lymph node (removed) 9/19 DX 4a T1N2aM0 10/1 TX 2x Cisplatin 35 IMRT 70 gry (Done 11/15) PEG tube in 11/7. Out 1/4, Back at work 2/4/13 PET 2/13 Clear, 10/16 all Scopes Clear, 4/14 Chest X-ray Clear, 5/14 Abdominal ultrasound Clear, 8 yrs clean!!!
| | | | Joined: May 2013 Posts: 187 Likes: 3 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: May 2013 Posts: 187 Likes: 3 | Connie, you have arrived at the right place. This group guided me through a difficult time and gave me wise counsel. I am 11 days out of treatment and asked questions and shared information on what my doctors told me or what I was considering doing. Never was I given bad advice. To get the most and survive this journey read and take to heart what is shared with you. Be strong and of great courage. You are not alone.
Age 55 HPV 16+ SCC, BOT 050613 Stage IV great team at OSU Tx 6 weeks of rad started June 3 8 weeks of chemo started May 28 RTOG Phase III trial Cetuximab group. Treatment completed 7/16/2013 PET Scan completed 10/08/13 Results discussed 10/11/13 NED - Free but am I Next part of the journey? 1year PET 10/24/14 NED Good reports now 10 years out. | | | | 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 | Connie,
We will need to know your exact Tx plan and type of chemo to give you the best advice but as Christine and others have said please indulge yourself starting NOW and enjoy whatever food and drink your heart desires.
Do get Fluoride trays.
Do get blood work which includes TSH levels and keep that number in a safe place.
AS Deb said do read our information pages.
Do ask every question you can think of.
Do not get overwhelmed. You will get through this and we will be there 24/7 to make your trip as easy as possible. I guarantee it.
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: Jun 2013 Posts: 49 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Jun 2013 Posts: 49 | There is so much information in this forum, real good practical information, from people who have "run the course". Much of it, you will NOT get from a doctor's visit.
As far as we are concerned, this site could be called OCF University, and many have "graduated" Magna Cum Laude - "living life large" as "Uptown" signs off with!
Take some time, to read and be encouraged and glean hope.
Barbara (CG) of Richard (with 2 weeks of treatment left)
65 yr old male in great health other than C. 5/1/13 lump discovered, 5/15 Biopsy, 5/29 PET/CAT, Diag: SCC HPV+ rt tonsil, 1 node, Stage III T1-2 N1, 6/10 PEG, 06/17 Chemo, 6/24 Radiation, 7/6 100% PEG, 8/14 Done with treatment, 11/6 follow-up PET, 11/8 NED, 11/13 PEG removed!
| | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | [quote=bjlral] Take some time, to read and be encouraged and glean hope. [/quote] Love it. bjlral, OCF University is fitting. With the education that I've received from Brian, Charm (RIP), Christine, David, etc...I've been asked to teach at one of the top 5 dental schools in the country, and will be added to their curriculum in the next year. That's a testament to Brian's commitment to peer reviewed science and getting the latest information out there with the OCF website, the RSS Newsfeed, and these forums. The only thing I can take credit for really is an incredible memory and amazing communication skills...because I'm humble like that. Connie, we have several OCF members in your state and a great relationship with MDAAC in Houston, the best advice when dealing with cancer, is to get the absolute best medical advice available to you, the rest is up to how your body responds to treatment. Keep your chin up, and plug in for support often...and keep eating and hydrating!!! E
Last edited by EricS; 07-27-2013 03:24 PM. Reason: always spelling
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: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2011 Posts: 805 | Hi Connie, Just going to add my hello and welcome you to the gang. It stinks that you have to be here, but we've all been where you are so completely understand the deer in the headlights look right now. Once you have a diagnosis and a treatment plan it really does get easier because you are fighting instead of waiting. Stay with us. 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 | | | | Joined: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | Assistant Admin Patient Advocate (1000+ posts) Joined: Oct 2012 Posts: 1,275 Likes: 7 | Connie, sorry you have to join our family, but welcome! There is a lot of good advice for you already as I can see, so I would just say that it helps sometimes when the going gets rough, to learn to take things one day at a time.
Gloria She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards
Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016. | | | | Joined: Apr 2013 Posts: 319 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Apr 2013 Posts: 319 | Hi Connie, Welcome!
My cancer treatment center in Pensacola is affiliated with MD Anderson, and I can add my assurances that you are in good hands with them!
I'd like to reinforce what others have said, read the forums, starting with this one. Why, because each intro thread introduces new elements and elicits new suggestions from members who've BTDT and have a bunch of nifty shirts to prove it!
Be pro-active, and no NOT assume that you don't need to be involved. Even the best medico's are still human and forget minor details from time to time, such as scheduling events. Things fall through cracks, be on top of things and speak up if you aren't getting a clear picture of who, what, when, where and how regarding any part of your treatment/condition.
Good luck, and please keep us informed as to your dx!
My intro: http://oralcancersupport.org/forums/ubbt...3644#Post16364409/09 - Dx OC Stg IV 10/09 - Chemo/3 Cisplatin, 40 rad 11/09 - PET CLEAN 07/11 - Dx Stage IV C. (Liver) 06/12 - PET CLEAN 09/12 - PET Dist Met (Liver) 04/13 - PET CLEAN 06/13 - PET Dist Met (Liver + 1 lymph node) 10/13 - PET - Xeloda ineffective 11/13 - Liver packed w/ SIRI-Spheres 02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node 03/15 - Begin 15 Rads 03/24 - Final Rad! Woot! 7/27/14 Bart passed away. RIP!
| | | | Joined: Jun 2013 Posts: 262 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Jun 2013 Posts: 262 | Hi Connie, sorry you're facing this but welcome to the best bunch of folks you could have on your side!
To all the great advice so far, I'd add try to get copies of everything -- pathology reports, operative reports, even bloodwork. The detailed info will help you sort out questions that come up as you go forward on this journey.
Hugs,
Mamacita
53 T3N2aM0 HPV+ 5/26/13 discovered painless superball-sized lymph node in neck 6/26/13 DX SCC R palatine tonsil 7/16/13 TORS tonsillectomy & selective ND, mets to 2 nodes 9/3/13 Cisplatin and rads begin, tolerated 1.5 of 3 planned chemo doses 10/16/13 Treatment ends Dec 13 Ulcer appears at surgery site Jan 17 Biopsy -- no cancer! Feb 17 CT/PET Scan lights up tonsil bed & nasal cavity, docs say probably inflammation, don't panic, rescan when ulcer subsides
| | | | Joined: Jul 2013 Posts: 2 Member | OP Member Joined: Jul 2013 Posts: 2 | Thank you I enjoy reading what others post. Got my mask started today and get pet scan tomorrow.
Connie M.
| | | | Joined: Mar 2013 Posts: 421 Likes: 1 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Mar 2013 Posts: 421 Likes: 1 | Hi Connie,
I see you've gotten a lot of great advice and encouragement already so I'll just say welcome, add my encouragement and tell you to hang on for the ride. It's a rough one but you'll make it through.
You didn't mention where you're seeking care but MD Anderson in Houston is the #1 rated CCC in the country. As others have mentioned being treated at or getting a 2nd opinion at a CCC is advisable.
Good luck, positive thoughts and prayers
"T"
57 Cardiac bypass 11/07 Cardiac stents 10/2012 Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+ Palatine Tonsillectomy/Biopsies 12-21-12 Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13 Emergency Surgery/Bleeding 2/18/13 3/13/2013 30rads/6chemo Finished Tx 4/24/13 NED Since
| | | | 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 | Connie,
One other thing that would help all of us that want to respond to your future posts and that is to add a Signature Line like mine and others. Go to My Stuff and Edit Profile.
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: 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 | Connie, I sent you a private message (PM) a few days ago. Take a look towards to top middle of the page, next to the My Stuff tab. You should see a tiny envelope blinking. Click on that to get your PM. Please take a few minutes to review it. There is a link which gives detailed instructions on how to add a signature. It really is very important to have a signature, it helps us to help you.
Thanks! 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 | | |
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