Previous Thread
Next Thread
Print Thread
#126516 12-19-2010 02:17 PM
Joined: Dec 2010
Posts: 2
Member
OP Offline
Member

Joined: Dec 2010
Posts: 2
Hello!
My name is Nina, age 58y/o that was diagnosed with Right Tonsil Cancer, Stage III, HPV + October, 20, 2010. I have so far recieved 2 doses of Cisplatin and will finish my round of chemo with a 3rd dose December, 27. So far I have had approx 25 rounds of radiation, and will be starting a boost of radiation for the last 10 visits this comming Tuesday. Only discomfort is a feeling of a lump in my throat, and only slight discomfort with swallowing, and barely a voice, moderate dry mouth. I have a peg to keep my nutrition up. The chemo and radiation wipe me out, I tire easily and become nauseated easily. I have a salty taste in my mouth, food and drink have no taste, a salty taste or no taste at all.I wanted to see what other patients are experiencing, and to keep up with any tips that may be helpful.


M7dEwD
NinaJane #126523 12-19-2010 04:06 PM
Joined: Jul 2010
Posts: 60
Supporting Member (50+ posts)
Offline
Supporting Member (50+ posts)

Joined: Jul 2010
Posts: 60
Hi Nina, I was diagnosed with tonsil cancer stage III/HPV in June/finished my radiations and chemo in early Sept. My tr0% eatment went fairly smoothly/I was tired, and used my peg and managed to just lose 15 lbs. Just don't fight the tiredness/if you are able to, and you need to take two naps a day, do it. Also, I had helpers to take me to my radiation treatments--lots of friends, and it was a real psychological boost.

I am 3 months post treatment, and most taste is back, most of the tiredness is gone. I feel like I'm 80% back to where I was before. Just take care of you now/#1 priority.


Susan/59/nonsmoker /tonsil cancer spread to tongue,stage III diagnosed 6/10, HPV+ T3,N1 Finished 35 radiation and 7 cisplatin 9/7/10.
susand #126529 12-19-2010 06:25 PM
Joined: Apr 2009
Posts: 329
Platinum Member (300+ posts)
Offline
Platinum Member (300+ posts)

Joined: Apr 2009
Posts: 329
Hi Nina,

I never had Chemo or Radiation, before and after surgery I had the feeling of a lump in my throat. I thought the cancer was in my throat after asking my surgeon he told me I have acid reflux, which I never had before. He put me on Nexium within 2 weeks the feeling was gone. I'm still on Nexium and will be forever.

Just a thought.

Take care,
Connie


SCC. of the left lateral tongue, anterior two thirds, T1 possibly a T2.
Left partial glossectomy, left selective neck dissection 4/21/09. Nodes clean, No Rad, No Chemo.

CT Scan 9/11 clean, CT Scan 9/12 clean


Moffitt Cancer Center in Tampa, FL. A+.

My hometown Lockport, NY.



ConnieFL #126537 12-20-2010 06:24 AM
Joined: Jun 2010
Posts: 87
Supporting Member (50+ posts)
Offline
Supporting Member (50+ posts)

Joined: Jun 2010
Posts: 87
Hi Nina-

I had that lump in the throat/difficulty swallowing feeling also. I had gotten to the point where I almost couldn't swallow because it was so painful. I had ended up in the hospital with vomiting and while there was seen by a GI doctor, who immediately diagnosed esophagitis (google radiation esophagitis). An infectious disease doctor also suspected a yeast infection of the esophagus, I was put on high doses of prevacid and diflucan for the yeast and started feeling better within a couple of days. Hope this helps.


Susan
Age 51, married with four kids age 11-18, 9/1/2010, Bx: high grade mucoepidermoid CA left sublingual gland.
10/8/2010, wide excision left floor of mouth, modified radical node dissection left neck.
T1N0M0. IMRT started 11/22.
Never smoked, light social drinker
Also happen to be ICU RN
Joined: Sep 2006
Posts: 8,311
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)
Offline
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Joined: Sep 2006
Posts: 8,311
Jane,

Other than the lump in the throat issue I think you are doing GREAT treatmentwise. My 3rd Cis was my last rad day (35th rad) so I'm surprised they have changed the 3 bag of Cisplatin delivery method.

You may not but for the vast majority of us the 2 to 3 weeks post Tx were our worse so just be prepared in any case. Keep up the daily hydration and calories and also keep using your swallowing muscles as they can loose their ability to swallow quickly if not used regularly.


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.
davidcpa #126559 12-20-2010 07:36 PM
Joined: Jan 2009
Posts: 1,844
Patient Advocate (1000+ posts)
Offline
Patient Advocate (1000+ posts)

Joined: Jan 2009
Posts: 1,844
Nina!

Glad you found OCF! Sorry you had to!

From the sound of things you are doing amazing, way to go! Energy levels and salty/no taste issues are very common, I experienced the same thing and I have energy and taste once more, even though it took some time.

Keep you chin up and keep posting and asking lots of ?'s, we are here to help and support.

Eric


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.
EricS #126574 12-21-2010 02:27 AM
Joined: May 2010
Posts: 224
Gold Member (200+ posts)
Offline
Gold Member (200+ posts)

Joined: May 2010
Posts: 224
i had radiation, but no chemo. Also had surgery.

But radiation knocked my voice out from my 4th week of 6 to about 3 weeks after, so about a month and 3 weeks of no voice.

Lump in the throat is a common feeling with reflux disease, and sometimes people get that while on the peg, sometimes due to not sitting up long enough after feedings and it can slide around and back up into ur throat. Maybe ask a doc for a reflux med, or you can try an over the counter one like omeprazole or zantac.

Also the last 2 weeks of treatment and the next 2 weeks after that i was sleeping almost 20 hours a day, so if you are tired, sleep, don't fight it.

As for the taste issue, mine came back like a month after radiation was done. But it's different. tomatoes are spicy, cant tolerate vinegar like in pickles, and can't stand spicy things at all. Or bubbles from caffeine. Some is starting to get a bit better, but still have issues with all.

Everyone experiences different things though. You might get your taste back just the same as you had it before, with no problems.

I have a question though. Are you using a mouth wash of water, salt and baking soda? I found that to help with the thick mucous, dryness and some of the pain. Also helped me refresh my mouth. I used it probably 5 times a day, but they usually recommend at least 3 times a day with radiation.

You are doing great and keep up the good work. Almost done and before you know it, you will live your life and be almost back to "normal".

I am 8 months post surgery and 3 months post radiation, and just dealing with the spicy and bubbles from carbonation issue and when i wake up, i rinse with the water, salt and baking soda mix to get rid of thick mucous feeling, but it's only when i first wake up. Otherwise, all other symptoms have pretty much resolved, but like i said, its different for everyone.

Hoping that treatment runs as smoothly as possible for you!!


25/female at diagnosis
Dx;stage 3 SCC tongue 03/25/2010
Surgery 04/13/2010
Trach,ng tube, peg feeding tube
Hemiglossectomy, right side neck dissection, 40 lymph nodes removed. Free-Flap transplant to tongue.
30 rounds IMRT ended July 15,2010

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,166
Posts196,921
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5