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.

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.

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

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.

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.

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

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!!