| Joined: May 2012 Posts: 31 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: May 2012 Posts: 31 | I was diagnosed on March 5th with Nasopharyngeal Carcinoma T1N2M0, after 2 months of going to the Dr. over an enlarged lymph node in my neck. He finally referred me to an ENT, and the bad news was delivered. I've had one chemo treatment so far (Cisplaten), with one scheduled every 3 weeks for a total of 6 treatments, and have two weeks of radiation done with 23 more rads to come. I'm just now starting to feel the effects of the rads....a couple of mouth sores, and my throat is a little sore. I had a PEG Tube put in right away, as I'm starting treatment at 93 lbs, and both my Oncologist and the Rad-onc felt this would be smart to not wait to see how I did before putting it in. Just wanted to introduce myself....now I'll go back to reading . p
Nasopharyngeal Carcinoma Stage III T1N2M0, diagnosed March, 2012...Treatments started April 24, 2012, finished 8/28/12.
| | | | 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 | P, welcome to OCF! Im glad you have found this forum. Its full of compassionate, caring people who are very knowledgeable and supportive. Treatments are not easy for everyone, a lucky few sail right thru with little side effects. With taking the 3 large doses of Cisplatin, watch carefully for any hearing issues. Make sure you speak up and tell your doctor immediately if your hearing changes at all. Also make very sure you take in adequate water daily to help flush it out of your body. It can be very rough on the kidneys so this is vitally important! Im very glad to read you already have the PEG tube as you are small. Your body is working extra hard to not only fight off the cancer but to rebuild itself while you are going thru treatments. Make sure you continue to swallow something every single day, several times per day even if it gets difficult. Your daily calories should be 2500+ and water a minimum of 48oz. This sounds like alot but your body is burning calories up at an amazing rate. Oral cancer can be difficult to go thru the treatments as they do tend to get progressively worse as time goes on. Keeping good hydration and nutrition will make a huge difference in how you do. Here is a list of easy to eat foods that mostly have a smoother texture so go down a little easier. I hope you have lots of support at home. Feel free to ask any questions you have and you will get several honest replies from people who know, they are the caregivers and survivors of this horrible disease. Wishing you all the very best as you go thru treatments! List of Easy to Eat Foods 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 2008 Posts: 711 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2008 Posts: 711 | Best wishes to you. Stay strong and positive, you can get through this.
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: 805 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2011 Posts: 805 | Hi, We are here for you. You are already running with it so at least that part is over. I think the beginning was the worst because you just don't know waht to expect. Where are you being treated? Christine is right about the hearing. Kevin has pretty much lost his left ear. We are assuming it was from the Cisplatin, as that is a side effect, but he also had Taxotere and 5FU at the same time all 3 times. He did the radiation after that with Erbitux each week. It is about the right time for the mouth sores. Have you used the feeding tube and are ready if you have to go to using it primarily? If not, be sure to get there. Sounds like your docs were good about keeping you ahead of the game. Kevin lived on scrambled eggs and pasta with butter and Ensure would he just couldn't eat solids anymore. He had a PEG, but HATEd it. He ended up losing 56 pounds, but had it to spare so it wasn't too bad. It was a lot of muscle though, that's the bad part. He is 6 months out and still hasn't put any of the weight back on permanently. He will gain a few, then lose all of it. We just go back and forth. That's with eating a full diet again. You are coming to the hard time, but you sound prepared. We are here for you. I hope you have a caregiver going through this with you? Keep in touch. Blessings, 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: 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 we Com and good luck getting through it..l we're here to listen and help if and when you need it... Hugs!
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 2012 Posts: 31 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: May 2012 Posts: 31 | Thank you everybody for the well wishes, and the advice....I'm being treated at the Kalispell Regional Medical Center....I came this close ______ to going to MD Anderson in Houston...until I found out that we have the IMRT here...radiation being the scariest part of all this to me. Being far away from family and friends didn't appeal to me, either. My husband is being my rock. He takes me for my amifostine everyday, then picks me up and takes me to radiation...I thought at first I could do this part myself, but the amifostine is just too darn hard on me...plus all the anti-nausea meds that go with it, would impair my driving skills. It doesn't matter tho, because he insists on taking me and picking me up. I have two sisters here in town, both who have taken on all cooking....for me, and for my hubby...every weekend the food piles in, and I'm eating for as long as I can. I did practice with the tube, tho...thought I better have that under control before I truly need it. Piece of cake, no problem at all. So far, I haven't lost any weight, even with the mouth sores....I just pile in the food behind my lips ...it's a little messy, but what the hey! Emotionally, I seem to do ok....tho by the end of the week, I think I've hit my coping limit, weekends are a blessing. I keep trying to look at Amifostine as my spit saver....give it a positive name...but so far "daily sick" seems to fit it best...LOL. I know this third week will be the beginning of the hard times...I'm as prepared as anyone can be for the unknown...one day at a time, don't fight battles that haven't arrived yet.....I'm conciously making myself follow in a positive thought process....since by nature, I'm more of a worry wort, fretting type person...a control freak, I guess...LOL. Learning new things about myself everyday. Having people to talk to who have gone thru this, or are going thru it at the same time is a sanity saver.....I can't imagine doing this alone. p
Nasopharyngeal Carcinoma Stage III T1N2M0, diagnosed March, 2012...Treatments started April 24, 2012, finished 8/28/12.
| | | | 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 | Things get hard at week three and four and progress to about two weeks after treatment ends - even if you're using the peg try to continue drinking and swallowing. It will maintain the reflex - hugs and good luck, it's not fun but with determination you will get through it.
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 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 | P,
First off sorry that you are now a member of our "society" but believe me you have found THE BEST source of information and help to get you through this.
One thing I'm curious about your Tx when you say you will be given Cisplatin 6 times spread out every 3 weeks. You may want to confirm that as most of us either got 1 Tx a week for 6 weeks or 3 Tx's over the 7 weeks of rad.
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: 1 Member | Member Joined: May 2012 Posts: 1 | I'm sorry to hear of your diagnosis. I went through treatment for Stage IV NPC in 2008.
Please let me know if I can help with any questions.
Mark Lin | | | | Joined: Feb 2011 Posts: 117 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Feb 2011 Posts: 117 | Hi P, it's me... from CSN. You are doing so GREAT and have the best attitude about all this. You are mid-way thru week 3 (I think) and sounds like you have everything organized in case you need them later. Good idea to "practice" with the tube, rather than wait until you can't eat so well and then have to do a quick lesson. I was lucky also to have the best hubby in the world as my nurse. There were days that I could barely get out of bed, let alone drive myself to treatments. I had great neighbors who cooked for hubby so he could care for me. Wishing you an easy ride for the rest of your journey.
DX 12/6/10 of T3 SCC Tongue. Surgery 1/3/11 was hemigloss & forearm free flap, midline mandibulectomy, Neck Disection-All nodes clear. Ended rads 5/11/11. Taste buds back to about 80%. PEG removed 4/5/12, experimenting eating real food again. If I can do this, so can you !! Stay Strong.
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