phrannie's Journey with Undifferentiated Carcinoma, Nasophary...

I had three Cisplatin treatments in conjunction with radiation and seemed to do ok, a little sick, a lot tired, and weightloss....still "ok". After rads were over I had 3 Cisplatin/5FU fanny pack. 5FU kicked my butt. Sick, hamburger mouth, unable to take in any nutrition or hydration without a feeding tube.

I've had rads twice....the first time it was along with chemo. My neck was burned, as well as my mouth...no taste buds, and no saliva. The taste and the saliva stayed gone for 3 years. Then I had a recurrence and had rads to the nodes under my collar bone...those rads had very little effect on my daily life.

If I could have chosen more side effects from that list I would have...dry mouth, weight loss (79 lbs at the end of treatment), nausea, incontinence, peripheral neuropathy, hair loss, etc etc. However, strange as it may seem....the mouth sores were the most debilitating.

What a great day!! I am in the new normal now....

Little left of my ability to taste, and saliva is pretty much a thing of the past....but I'm alive!!

Neck dissection on 11/13/2015. Neck is a little stiff, but did not lose the ability to raise my arm....THAT was a plus!!!

Scan in April showed nodules in my lungs, and a tumor in the scalene muscle in my neck. Because they were doing a wait and see on my lungs, no radiation this time....and because the scalene muscle contains the nerve that would run the right side of my diaphragm, no surgery was prescribed either. I started Keytruda the end of June, and had my 10th treatment last Monday. I've had two scans, and so far I am stable. If and when the Keytruda quits working, I'll be looking into clinical trials.