We started the second phase of treatment (first being the surgery) for this blasted thing two days ago on Tuesday 9th July. The plan is 3 rounds of chemo (cisplatin) given over one day, each 3 weeks apart along with concurrent radiation - 60Gy over 30 treatments.

The first day was a long one in the hospital - in at 7.30am and not leaving until 4.15pm . They had some trouble getting the line into my hand (4 attempts) but once it was ready the rest was just sitting around waiting. Nothing really to worry about at this stage.

Didn't sleep very well that night as felt a bit queasy and had a lot of things racing through my mind.

Day 2 I visited the nurses when I went in for my RT and they added another anti-nausea med to the mix which has helped for sure. Still have nausea but it's tolerable now.

Day 3 (today) and my third RT. The scars on my neck are redder and my neck is slightly pinker too. I'm using the Aqueous Cream, gargling with salt/bicarb soda and eating/drinking at this normal stage is normal.

We have two kids (6 year old girl and 4 year old boy) and they both have colds and I'm now getting a sore throat too. Better now than later in the treatment though.

3 treatments down and only 27 to go... I must say that I'm nervous about what is to come as I know it gets pretty difficult. What else can you do though but battle through it... hearing all your stories helps with the courage.

The best thing you can do to get thru this the easiest way possible is to make sure every single day you take in at least 2500 calories and 48 oz of water. No skimping and trying to play catch the next day, as tomorrow never comes and it quickly turns into a viscous cycle. Ask your doc about a prescription to get hydrated a few times per week. Drink even more water around when its chemo days to flush that poison from your system. Cisplatin can cause issues with kidneys and hearing. Report any change, even minor ringing to your doctor immediately.

Avoiding anyone who is sick while your immune system is compromised will help you too. With having young children thats not going to be easy as they seem to bring everything home. If necessary, wear a disposable mask while around them, wash your hands and use liquid hand sanitizer. Avoid crowded places as much as possible while going thru treatments.

Hang in there!!!

Meli,

My stomach got butterflies knowing what you're about to go through. I'm 10 weeks post Tx but the memories of treatment are still very fresh.

As Christine said, hydration and nourishment are vital but I found it was a lot easier said than done. I was unable to eat the last two weeks and I ended up with a PEG two hours after ringing the bell. The 2-4 weeks after treatment are equally as rough as you will continue to "cook" for a while after treatments are done.

Staying ahead of the nausea and pain is key. Make sure you take your meds prior to the symptoms hitting you. It's a lot easier to keep pain away than it is to make it go away. The same with nausea.

Communicate all your symptoms to your team. They don't know if you don't tell them.

I won't pull any punches...Treatment is brutal but you'll get through it.

Heed the advice of the folks here and do what you can to follow it.

Positive thoughts and prayers

"T"

This cancer is 50% mental so count on your mind messing with you throughout this crappy Tx. Your sore throat is probably due to radiation irritation not the colds but you are naturally going to think the worst. We all did.

You will soon lose your taste and that for me was quite an adjustment. I mean we all eat for pleasure and BAM that's gone. Just be prepared. Next you will slowly avoid eating solids and will then rely on totally liquids. Remember the best thing to do is get 2500 to 3000 cals EACH AND EVERY DAY and swallowing will become progressively more uncomfortable so you will want to limit the amount of swallowing you have to do so I recommend getting BOOST VHC which has 560 cals in each small can. That means you will only have to swallow 5 of those cans vs 7 or 8 of the Plus cans. Believe me this will mean a lot when or if you get to that point.

Did you get Fluoride Trays?

Watch out for the 2nd and 3rd chemo. The first one for me was a non event, scary as hell but no nausea. The second one, which remember comes after 15 radiations, made me sick as a dog despite the anti nausea stuff and the 3rd one which was before my last radiation was much worse.

Some treatment centers break the 3 large bags into 6 weekly bags which seem to be easier on the patient and doesn't seem to affect the survival rate. Also if you start to hear anything strange coming from your ears, they call it "ringing" but it sounded more to me like a faint buzz, call your MO immediately as Cisplatin, especially given in this 3 Big Bag method can cause permanent hearing loss. They can switch you to Carboplatin which some say is just as effective as Cis but doesn't have the nasty side effects. Yeah I know that begs the obvious question but don't bother asking because you won't get an answer.

I'm sure you will continue to get suggestions as you progress and please ask us anything anytime.

Thanks Christine, T & David. I make notes of these things everytime I read them and so appreciate everyone's tips. The more help the merrier... soldier on!

We're now part way through week 2 and things have started to get sore already which seems to have surprised everyone (I've only had 7 RT). Mouth sores started popping up yesterday around the edge of my tongue and some on my cheeks as well. It's 5am now and a sore throat woke me up and I couldn't get back to sleep so I've gotten up for a while. It doesn't help that I've caught my sons chesty cough and so have a sore throat from that probably too, along with a sore chest and sore muscles from coughing.

Had the oral health clinic today and they gave me some Chlorhexidine antiseptic mouth wash, some difflam mouth wash and a humidifier to start using at home. Used the chlor mouth wash last night before bed - man that stuff smarts!

I've also started getting ringing in my ears and am scheduled for another hearing test today to check for an damage. I'm on the big 3-weekly bag of cisplatin and I think that you can change to weekly smaller doses to help that. Is that right or do you have to change the chemo drug altogether?

Other than those minor things everything else is fine. I'm still working (I own my own business so I've got great flexibility but lots to keep an eye on) but have also started to feel quite tired again after just recovering from chemo round 1. How did tiredness affect you all?

The cough and the sores are both making me feel a little miserable already. I feel like a big wimp.

Thanks for tolerating my wining.

Hi,

the 3 bag cisplatin is common with chemo-rad therapy. I had weekly lower dosage of carboplatin, designed solely to assist the radiation therapy since I had 9 weeks of 3x3 induction TPF which offered far more chemo to reduce/kill the cancer before starting chemo-rads.

The weekly dose did not effect me at all, the effects from radiation are another thing altogether. don

The tiredness wasn't bad for me at all until about 2-3 weeks before I was finished with treatment. But the pain medicine makes me hyper most of the time, also I had someone stopping by my house frequently taking care of all the chores around here and my job is a desk job, work at home, and I can work whenever I want. I would work for an hour, watch TV for an hour or two, work for an hour. So I don't think I ever really did anything to wear myself out. The last few weeks of treatment was a different story, lots of naps.
I am not sure if it was the chemo or the rads that made me tired. I am pretty sure it was the rads because chemo never bothered me very long. I would have viscous, intense side effects for a night and that was it. Except the 2nd dose, I was nauseated for a few days.
If you don't have one yet I would think about a water pic, it is wonderful for during and even better for after treatment. There were times I could not use it during treatment but for the most part I used it on low and helped get some moisture to my dry mouth and rinse out any particles that may be there. After treatment it is even better for the same use and it helps me cough and get up some of the thick phlegm that most of us get after treatment. Glad you got a humidifier, I think that is a must also. That and sleeping in my recliner for a few months now.
Keep hanging on, you can do it!

I was tired even before radiation started, due to chemo, which was far worse than radiation was. Everyone is different. About 10 -14 days or two weeks, most start feeling the radiation effects, the worst being the last two weeks up to two, three weeks post treatment, as mentioned. Chemo effects start just afer a few days of infusions, and can be simlilar to radiation side effects with Dry mouth, mucocitis, thrush, etc and compoud the radiation effects, but are mostly acute, and side effects not as long lasting as radaition effects. Good luck.

If you have already suffered hearing damage (the ringing) due to the first bag of Cis I would think they would switch you to Carboplatin.

Re the Tx reaction, remember we all can be different so what you are experiencing is what it is and DON'T let anyone imply that because you are having a bad time earlier than most that there is something wrong. Do get the pain under control NOW as it can trigger a bad domino effect of other health issues.