Oropharynx Stage 4

I cant tell you about the 2 out of 3 effects, but I did have 3 rounds of Cisplatin for tonsil cancer,and like you, I got sicker than a dog, especially the first time. After that, I had a handful of antinausea drugs, Emend, Zofran, Ativan, and a couple of others, all taken in rotation so that at any one time at least one of them was close to full strength. Maybe your doc can get you the drugs so you can finish with the cisplatin. I know that Emend and Zofran are very expensive, so unless he goes to bat for you with the insurance company, you wont get them. All you can do is ask.

Best wishes, and good luck

Mike

Thanks for the response, Mike.  Yes, I did have the Emend, Zofran, Ativan, and Reglan.  I got an infection and unfortunately, the doctors didn't believe I had a high temp because it was being masked with ibuprofen and tylenol. Finally, after 5 days I ended up in the hospital with a 104 degree fever and my blood counts were terrible.

How many radiation treatments did you have and when was it done?

I am trying to find people who have had stage 4, what treatments and the outcome.

Thank you,

Kevin

I was stage 4, primary in the left tonsil with lymph node involvement left and right side. I had 3 rounds of cisplatin and 7 weeks ( 35 sessions) of IMRT. I was diagnosed in July of 07, started treatment in August, finished in October (on my wife's birthday, another thing to celebrate). I had a PET scan in December ( clean ) , a surgical biopsy (negative) in January 08,and have had clean CT scans in Jan, Feb, April and May since then. I did well enough on rad and chemo that the ENT waved off on the planned neck dissection (whew!). I did get an infection in my throat where the tumor was back in May (happy Mother's Day) , my throat swelled shut and I went to the ER and spent the weekend in the hospital.

At 8 months out right now, I am doing well, about 50% on regaining taste and about 30% on saliva ( 50-60% when I take Salagen). I have been trying to regain some of the 45 pounds I lost during treatment, but that's taking some time, I've only gained back 8 pounds. My stamina is about 80-90% of what it was before, I expect that to improve as I gain more weight.

Hope this helps

Best wishes,

Mike