I haven't posted since I started my treatment so I thought I would write an update. I had a port and PEG tube done 8/24 (if I remember correctly) before Tx. I was supposed to start chemo and rad the next day but wow that feeding tube got me nauseous and sore so I started the day after. My stomach stayed sore for about a week. The docs said it was better to get the port and PEG done before treatment to prevent any complications if I needed a PEG during Tx. The quick and dirty- the IMRT is shooting the lower jaw and neck, both sides. I have had 8 rounds so far. The chemo (cisplatin) really knocked me on my butt right off. The folks here at Tripler Army hospital did a great job of giving me plenty of meds to control nausea. I was borderline queasy for about 5 days but didn't throw up. I even went to work for a couple of days but by the weekend I was on my back, it caught up to me. Major fatigue and loss of appetite. My tastebuds went off right away. Everything had a metallic taste. After round 5 of the rad, my lower jaw started swelling up. By round 7 (last Friday) of the rad, my throat started swelling up. I can still eat but it has to be almost mush, and everything tastes off. My mouth went from really dry to the last few days having really really thick mucous. Next week I am up for another round of chemo. I got the ringing in my ears from the cisplatin like the 2nd or 3rd day after, but right now it is only very infrequent. Just an update.

Sean, what you are going thru seems to be the norm for us. Good luck and keep up the fighting the war. You will win it.

Sean, make sure you tell your doctors about the ringing in your ears. My husband has permanent hearing loss from the Cisplatin.

YES DO TELL THEM ASAP ABOUT THE RINGING as it will cause permanent hearing loss usually in the high frequency range. They can switch you to Carboplatin which is touted as being just as effective as Cisplatin but without the adverse side effects.

That's a shame the Tx is hitting you so hard so fast. Did they mention how many Gys they were going to give you?

Hang in there and despite the loss of taste and eating difficulties please keep up with the calories and hydration and also keep swallowing each and every day.

My MO put me on Carboplatin the second time around for exactly the reasons David mentioned. I did not have any hearing loss nor ringing from the Carboplatin and you still get that cancer killing platinum effect.
Charm

Sean,

Starting week 2 myself. Looks like your just ahead of me as I'm on treatment 6 tomorrow.

Very mild pain for me so far. Had to take a nap today though. the Ethyol treatments are a pain but i have not had any nausia yet.

Just knocking on wood here in Michigan.

Kelly

Sean and Kelly, Good luck with whats ahead, just hang tuff and the end will appear and then slowly you will start feeling better. Good luck and best wishes. Semper-Fi Bob

Sean,

It does sound as if the symptoms have hit you somewhat earlier than for some. But- this gives you a chance to get your meds for everything in order and to be prepared for when you need to use the peg for pretty much all of your food and even water. If you are getting bad mucous already, you may want to see if they can give you a suction machine as it really helps. Sometimes it takes a while to order.

Good luck to both you and Kelly as you go through your treatments.

Sophie

Sean and Kelly, my partner Steve is 2 wks post tx and it seems like only yesterday we were back where you both are. We got through it and are coming out the other side and so will both of you. Stay tough and hang in there. This is one hell of a rollercoaster but we all get through. Steve also got the thick mucus. He seemed to get it for about a week after he had cisplatin and then it eased off. He hasn't had it for a week now so fingers crossed you will find it eases off as well. It was the same for him after all 3 cisplatin treatments. Good luck to both of you. Remember there is a light at the end of this tunnel. Take it one day at a time and you will both get there.

Wendy