Mar 26, 2013 - 9:49 pm
So the background info... I am a 28 year old female with nasopharyngeal carcinoma. I discovered it with two pea-sized bumps on my neck. They kept getting bigger but doctors didn't think anything of it. Finally, a year after the discovery, a biopsy was conducted, and the pathology reports indicated that the growths on my neck were cancerous and that the suspected tumour was behind my nose. After an inspection of my nose and an MRI, it was concluded that I had NPC. A day later I was told I was pregnant. By that weekend, the pregnancy was being terminated as I really needed the cancer treatment, and chemo would be too dangerous for a baby. Got a feeding tube put in, which was a horrendously painful experience for me, but am now completely dependent on it.
Since December 2012, I have completed 35 radiation sessions, and 3 high-dose chemo cycles of cisplatin. There has been significant damage to my hearing, so for the last 3 cycles, I was switched to carboplatin. In addition to the carbo, I have an infusion pump for 4-days that slowly releases yet another chemo drug, 5-FU, into my blood stream. On the first cycle of 5-FU, I was hospitalized due to severe mucositis (this is NOT the same as mucus buildup, which is another nuisance, but not my biggest monster right now - if you don't know what it is, look it up), and really high fever that nearly wiped me out. I eventually got desperately needed antibiotics and the mucositis cleared up in a week. That was hell on earth, despite my understanding that the last 3 cycles would be the easier ones.
I just finished my second last cycle, and the 5-FU was reduced by 25%, and I'll be receiving Neupogen shots for 10 days to boost my immune system, and hopefully avoid severe mucositis and the emergency room this time around. If all goes well, this will be the same plan for my last chemo cycle next month.
After my 3rd chemo cycle, a few weeks after my last radiation, I was recovering well and my taste started to come back some. Sweet was first, and some salty. I was starting to eat broths and soups and even got to cereal. There was an annoying lingering sour taste, but I was so excited to start eating again, and I really wanted to get rid of the feeding tube. The dry mouth was the worst. I was barely producing saliva, and what was left of it was incredibly thick. Even water wasn't helping get the solids down. Then my mucositis kicked in I was back to pure feeding tube again. I wasn't speaking, eating, burping, coughing - absolutely everything hurt.
In order to avoid mucositis this cycle, I am also back to 100% tube feeding by choice, just until I get over the hump and boost my immunity. I plan to do the same for the last cycle.
January 24 was my last radiation. Since then, I will have 3 cycles of carbo and 5FU.
What I'm trying to figure out is when the dry mouth will start to get better, if it every does, and if taste does return to normal??? Will there be a day my feeding tube can be removed, and when will this dry mouth end. I have all the biotene, rinsing with baking soda washes, chewing gum when I can, and drinking lots of water. I even have a week's worth of home hydration after each cycle. I don't want suggestions on how to replace my saliva, I just want to know if the dry mouth and taste spell gets better, and if so, around when??? Am I slower than the average at healing? Does the clock start after radiation, or after all of my chemo cycles as well?