| | Joined: Apr 2012 Posts: 111 "OCF across the pond" Senior Member (100+ posts) | OP  "OCF across the pond" Senior Member (100+ posts)
Joined: Apr 2012 Posts: 111 | Hello to everyone, and thank you all for such a wonderfully supportive forum. I am now 7 months post treatment for LBOT SCC HPV16+, and doing well. I found this site as I was beginning to get past the worst of the treatment effects and found answers to all my questions. I usually spend so much time reading posts here that I end up too tired to get my thoughts together to do this introduction, but I thought it was time to put that right and join the community.
My worst problem during treatment was mucositis giving me very painful mouth ulcers made worse by thrush, so I was unable to eat for several weeks, (very relieved to have a gastric tube). My return to normal eating seems to be a slow process. I still have a dry mouth and swallowing is difficult so I�m still mainly on juiced fruit/veg, soups and smoothies and a couple of Fortisp (similar to Ensure) bottles a day. I do make myself eat small portions of more solid food each day washed down with lots of water. In the last month tastes have improved a lot so some foods are becoming more enjoyable, but I would say that eating is still more of a chore than a pleasure. I lost about 30 lbs from when my eating problems started when my back teeth were removed. This has brought me down to a nice size that I am very happy with, top edge of normal BMI. I have managed to stabilise at that only through carefully calculating my intake using the MyFitnessPal app on my phone. Without that I would never remember to eat enough. I am now trying to increase my exercise levels which does make upping my food intake more challenging.
I have a wonderful partner who was able to take time off to be at home with me while I was going through treatment. We were both able to keep a fairly positive attitude to dealing with it, mainly by not dwelling on the negative thoughts and taking each day at a time. I have learnt an awful lot about how much family, friends and workmate care about me and about appreciating my life. A book that has really helped me is �Anticancer: a new way of life� by David Servan-Schreiber. I learnt so much from it so would recommend it to anyone new to facing the horror of cancer. In fact I have a few friends who have now read it who are not facing it themselves but are interested in a healthier lifestyle.
I am back at work part time and my energy levels are pretty good. So all in all I am feeling pretty lucky with my life. Though when I�m tired in the evening I do still get upset when food insists on sticking in my throat needing several mouthfuls of water to wash down! But I�m hoping there is still time for more improvement on the eating front. I am also beginning to eye up what others are eating with jealousy, which I take as a good sign that my interest in food is returning!
I have been very encouraged by the amazing stories of others here, so I hope I can help to provide some encouragement to other who find there way to this forum.
Sally
Dx 10/11 51yrs LBOT Stage 4 2nodes HPV16+. Non-smoker mod alcohol.
10/11 Induction chemox2 (Docetaxel, 5-Flu, Cisplatin) then Cisplatinx2 IMRTx30. Ended 01/13/12.
12/07/11 RIG. RIG removed 05/05/12.
4/12 CT scan clear. Visual scope checks clear as of 10/13. Learning to live with eating challenges.
| | | | | 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, Sally! I see you joined months ago. Glad you have taken the time to introduce yourself. Its always great to have another positive survivor among our members. Dont worry, you will see many more improvements over the next year and a half. Your eating will improve and you will return to almost the same as you were before. Almost! In some opinions after cancer, they are better as they have a new appreciation for life.
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: 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 | Welcome and please stick around to help others in need of your new found experience and wisdom.
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: Aug 2011 Posts: 596 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2011 Posts: 596 | Welcome, Sally. Thanks for sharing about your treatment and recovery. I am facing a new primary tumor in my left tonsil (this will be round 2 with the beast). I will going with chemo and rads this time. I'm always glad to hear of people's recovery and to know that so many have "been there, done that" and it makes me believe that I can to...for a moment, at least.
Good to see you here.
Best wishes,
Kerri
37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
| | | | | Joined: Sep 2008 Posts: 711 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2008 Posts: 711 | sally, welcome and glad to see you posting. Well done on getting back to eating some. It took me a lot longer. Hope you continue to improve daily and keep that positive attitude.
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: Oct 2011 Posts: 225 "OCF Down Under" Gold Member (200+ posts) | | "OCF Down Under" Gold Member (200+ posts)
Joined: Oct 2011 Posts: 225 | Hi Sally, nice to meet you. When my brother was first diagnosed, several people mentioned the Servan-Schreiber book to me, so I bought it for him. I just wanted him to feel less powerless in the face of the Big C, but a few of us also read it and I agree with you - there are many ways Servan-Schreiber suggests we can all "tweak" our lives. I would highly recommend it also.
Your treatment plan was very similar to my brother's. He is 9 months post treatment and in the last few months he has started to get some taste back, although lack of saliva while asleep still bothers him a lot. You are still relatively early post treatment. Wiser ones here will tell you that for every week of radiation you will need a month of recovery - I'm sure there's room for improvement for you. I wish you the very best. Linda
Brother 49yo DX 22/6/11 Tonsil SCC HPV+ Stage IV T4N1(?)M0. Carbo/docetaxel (Taxotere)19/7, 11/8 (with E-tux), 1/9; E-tux 11/8, 25/8, 15/9, 30/9, 14/10, 28/10; IMRT X 35 (70gy tumour;63gy nodes;56gy gen area) 19/9-4/11/11. Clear PET scan 1/2/12. 1 and 2 year post treatment checks good.
| | | | | 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 and welcome! Everyone heals at their own pace you'll get there with the food etc. take care
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 2010 Posts: 38 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Jun 2010 Posts: 38 | Hi Sally:
My best friend is applesauce. It helps me get food down better than water.
My speech therapist also recommended Italian Ice since that will also help if there is swelling, but the applesauce really does the trick for me.
I buy the 6 packs of the no extra sugar added and always keep one in my purse, just in case.
'08 SCC Rt tongue,part glossect.
'09 Rt neck dissect, 3 Cisplatin, 35 rad.
Aug '11 Rt tongue,hemiglosstmy, Lt neck dissect, forearm flap, 8 Erbitux,30 rad, brachy tongue.
Oct '12 SCC prev stoma site. SCC inside trachea.
Nov '12 total larengectomy, addl neck disect, pec flap
Oct '15 Myelodysplastic Syndrome (form of leukemia)
Dec 8, 2015 passed away peacefully at home surrounded by loved ones
How Cindy wants to be remembered..."I want people to realize I am no longer trapped in this body prison, and I will be free and whole. I want to be remembered by all the good and loving times spent together, not in sadness." | | | | | Joined: Apr 2012 Posts: 111 "OCF across the pond" Senior Member (100+ posts) | | OP "OCF across the pond" Senior Member (100+ posts)
Joined: Apr 2012 Posts: 111 | Thank you all for your lovely welcomes. I already feel part of this warm family. I have been helped so much but by everyone elses experiences and advice so I hope I can contribute too.
Kerri, keep strong. You are being certainly being tested, having to go through this again. As others will have said, the treatment is harsh to be effective, so focus on ticking off the days and getting the treatment behind you. Take heart in the many good news stories on OFC for this treatment.
Dx 10/11 51yrs LBOT Stage 4 2nodes HPV16+. Non-smoker mod alcohol.
10/11 Induction chemox2 (Docetaxel, 5-Flu, Cisplatin) then Cisplatinx2 IMRTx30. Ended 01/13/12.
12/07/11 RIG. RIG removed 05/05/12.
4/12 CT scan clear. Visual scope checks clear as of 10/13. Learning to live with eating challenges.
| | | | | Joined: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,406 | Sally, greetings and welcome. I'm so glad to hear that you're doing so well, that you've gotten through the worst and that you have someone helping you out. I'm sure that was a huge part of keeping you in a good frame of mind and staying strong. As one of my other fellow Davids said (there are scads of us here), good for you for getting back to eating real food so quickly. Even though it might not seem so to you. Took me a solid 6 months, er, well, no pun intended. Not too much anyway.
Dr. Servan-Schreiber's book is excellent, and I was saddened to read of his death I believe it was late last year. Another truly great book is "The Emperor of All Maladies" by Dr. Siddhartha Mukherjee, which won our Pulitzer prize and deservedly so.
Like you I feel very lucky. Keep us posted on your progress!
David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
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