| 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!
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