Hi all

My Dad was diagnosed with SCC BOT a month ago and just started chemo/rad. He was told by the doctors that he wouldn't feel the side effects for at least a week or so, but after only day two he is already nauseous and his throat is burning. He was hoping to have at least another week at work before he had to take time out. I am concerned as I know the treatment gets progressively worse and if it is this painful after only two days, I am worried about how bad it is going to get.

Did anybody else react this quickly to the treatment?

Thanks

Yogip, I can only speak to radiation side efx, and for me it took a good couple of weeks before things started to go south. I hope your father's doctors are helping him treat the pain and nausea. Don't hesitate to ask them and/or bug them about this!

Courage to you both.
David 2

Welcome to OCF.
As my treatment was not the same as your fathers I am unable to comment but hope others will jump in as well to answer your questions. Best wishes for your fathers treatment and keep asking away as the questions arise.
As David says "Courage to you both"
Where abouts are you in Australia?
Gabriele

What type of chemo?

How many chemo Tx's will he receive?

You will hear this many more times but each of us can respond differently to this Tx so keep that in mind and only consider what we tell you about our experiences as a guide rather than the bible.

I was given the 3 dose version of Cisplatin (some are given smaller weekly doses which some say lessens the side effects. Even with the anti nausea meds I felt queezy after my first; worse with the second bag and horrible with the 3rd.

Re rad, I swear that I could smell skin burning after only my first rad but I had no pain until probably my 4th week. I quickly lost my sense of taste, first with things, not all, tasting bitter and then tasteless later on.

VERY IMPORTANT...to make sure he consumes at least 2500 to 3000 cals each and every day and at least 48 ozs of water each and every day. He will soon migrate to a liquid diet but he MUST keep with the cals and water EACH and EVERY DAY.

Did they fit him for fluoride trays?

Keep on top of the pain and nausea because those two things will really interfere with his caloric and hydration goals which believe me will bring on more adverse side effects.

Hi Yogip

Alex and I just finished treatment at the end of August (cisplatin weekly + radiation daily for 7 weeks) on Sydney's north shore so our experience is fresh. On "chemo day" we compared notes with others. Lesson One: Everyone is different.

My Alex "sailed" through radiation compared with the 16 weeks chemo beforehand but I think this is because he was really sick before chemo (had lost 15kgs by diagnosis, dropped another 12kgs by cycle 2, multiple lung collapses and 1 major lung surgery unrelated to cancer) so started sick and malnourished. By the time we got to chemoradiation, the chemo had shrunk his tumour, we had got feeding back under control, and Alex was positively buoyant. Lesson Two: Nutrition and hydration is an important part of treatment.

Alex's new friend Dave did not fare so well and started suffering at the end of week two and by the second last week he was nearly silent except to abuse his wife. Unsure why, whether it is stress or chemicals, but gentle souls can turn into devils during treatment, and I also copped more abuse in 6 weeks than during our entire relationship. Of course I was also under pressure and in pain so maybe my own coping mechanism was a bit damaged (I definitely felt very sorry for myself and resentful of Alex). Lesson Three: People are not themselves during treatment.

People will tell you to look after yourself but the reality is, it's difficult if not impossible - not until there is a hiatus when you can go away and quietly have your nervous breakdown in peace . Lesson Four: Plan your getaway and hang on to the thought when your day is dark.

Good luck and keep checking back here for tips and advice or just a vent. The people here are mainly American but there are some old hands all over Australia who can help with the Ozzie perspective (our healthcare system is just so different although actual treatment appears the same). Lesson Five: Seek support

Oh and Lesson Six: Give credit to those who support. If it hadn't been for Gabe in the first instance to turning me on to this site and listening to all my crap at work, Karen Rose for helping with feeding, WendyG for putting it all in perspective, and ChristineB for her cautions about side effects, I would have tossed either myself or Alex off the balcony by now
Karen

You and Alex are very welcome
Love
Gabriele

He is doing cisplatin weekly + radiation daily for 33 days here in Sydney.

His taste buds are messed up all ready and the dry mouth has started (which is all manageable at the moment) but what has really knocked him flat is the nausea. He felt fine until the second day and then it hit him like a truck and he spent the next 24 hours vomiting and feeling awful. He was so bad at the hospital they put him on a drip before they gave him radiation yesterday. He was such a health nut before this and never got sick or vomited, so I think his body has gone into shock from everything that is happening.

They gave him some anti nausea meds yesterday and it seems to be making him a good bit better, but it is also the weekend, so it could be the break from the treatment that is helping too.

Re the radiation, he only had that pain I posted about after the second day and he is okay now. His jaw bone and his throat were quite sore that day though. Not sure if its the nausea hiding the pain now or it has temporarily disappeared for some reason.

Thanks for the tip re nutrition and hydration. He already has the PEG and he's making sure to get fluids into him through both. He's aiming for 2L per day, but it was impossible to keep anything down for the last few days. Hopefully the anti-nausea meds work and he can keep the food and water down this week.

Thanks again for all your responses. Its great to know there are people to talk to who have been through this and come out the other end. I have been browsing the site since his diagnosis, but hadn't posted before. My Mum is the one in the trenches with him as I have my own young family to look after. Its nice to have these tips as a way to help other than just helping with the grocery shopping. The tips have been very useful...from the big ones like looking after your teeth, to the little ones like using warm water in the PEG instead of cold! I just wish there was more I could do.

BIG CAUTION on the use of the PEG....he should only use it when he absolutely needs it except I guess to learn how to use and care for it. He needs to keep swallowing daily and keep his throat muscles active. There is the theory that if one doesn't use those muscles they "forget" how to work in a very short timeframe which can lead to a lifetime dependence on the PEG. Now I didn't get the PEG so I'm sure there will be PEG users that will provide their true experiences but IMO it's way to early to start using it.

Before each Cisplatin I was given a pill (Emend) which I took one a day for 3 days and then I was given fluids and more anti nausea meds in a drip right before the Cis bag.

I assume he is getting IMRT radiation?

We've talked a lot about the importance of swallowing through the pain (another useful tip from this site). I'll be sure to caution him again, but at the moment he is just pouring water into it to get used to using it so when he really needs it he won't have to think too much about it. He is still eating and drinking as normal...well, as normal as he could, considering how sick he was for a few days.

It is IMRT radiation... but the doctors told him they'd destroy 50% of his saliva glands, that he'd never be able to eat a steak again and would prob need help learning to swallow again. Not sure exactly what this means as far as where they are aiming the radiation or if this is normal, but I am hoping they are just preparing him for the worst case. At least they also told him they think he has an 80% chance of making it through so the light at the end of the tunnel may seem far away, but it is shining brightly.

It sounds like you all are doing the right things. I was about 5 weeks into treatment before I "hit the wall." then it was all through the tube. As far as eating, NEVER EVER GIVE UP!!! And,,,, don't let a doctor make you think that way! I eat steak, chicken, bread, etc., and was told the same thing. It took a long time to get to that point (And I'm stubborn I guess) but it's about learning how, being patient, small bites and lots of water, and desire to succeed. Some meals take a really loooong time but it's all about striving to be "Normal" (Whatever that word means-LOL).
Best of Luck. Your Father will get through it with your help!
Steve

The chemo hit me 2 days after the 1st tx, but only lasted about a day and 1/2. Radiation didn't really hit until the end of week 2 when I found that everything tasted like week old garbage and I was having a hard time swallowing. Seems that your Dad's nausea is probably like what hit me and hopefully has gone away by now and the rad. effcts will hold off for a while. Good luck.

Re the radiation damage and resulting long term side effects to his saliva production...that's why we say that we each can be different because we all differ in the "killing field" or what is in the path of the radiation beam. If his docs can't avoid destroying appx 50% of his salivary gland (which one or ones?) then I guess they pretty much should be able to tell him the resulting side effects. We have many salivary glands so let's hope they are wrong in his recovery ability.