As you all know that I will beginning treatment in a few weeks. I was just wondering if you could tell me some of the side effects of IMRT and cisplatin. I know that every one experiences things differently but I want to be prepared for what might happen so I am not thrown off guard. I do notknow yet if I will be doing 5 fu, as I have not seen the medical oncologist yet, but know that I will be doing cisplatin. Anyway I just want to be prepared as possible. Thanks.

Hi, Angelia -

Side effects of IMRT are, as you can imagine, different for everyone. For me, it took almost three weeks of tx to develop sores that were very painful and for which I needed a good amount of pain meds. They also gave me three days off to recover a little before resuming the last three weeks of tx. The last three weeks were harder than the first because I already had the sores, and by the end I was again using a lot of pain meds to manage. The two weeks after treatment were the hardest in terms of pain/sores, but meds did help a lot, as did the constant support of my fiance and family! I also walked a mile or two daily throughout treatment (stopped during the two weeks after; too tired). That's the other side effect that took me by surprise -- the fatigue. It kicked in AFTER treatment, and still has me tiring early in the day 7 weeks post-treatment; I'm trying to be patient with recovery from that, though it's hard.

One more side effect -- the taste buds. Mine have changed so that sweet foods no longer taste good and many things have a metallic/sweet tinge to them. It's not awful, just annoying. And I'm sad to have lost chocolate as my favorite daily indulgence -- it just doesn't taste good any more...

You may have an easier time than I did or a harder time -- it really varies from person to person. IMRT is the best you can get -- much improved from years ago when radiation was less accurately directed at the target area. You'll get to know your technicians, you'll fall into the routine, and you'll even get more comfortable with your mask as you go through the tx.

One other thing to know is that you should eat and enjoy all yor favorite foods now, before you start! Treat yourself to the best, and eat eat eat!

Many people here have had the cisplatin (I did not) and will be able to tell you about the side effects of that.

Good luck with everything! You're embarking on an important journey -- I hope it goes well for you! We will all be thinking of you as you go through your treatments.

Hi Angelia. Cisplatin "can" cause permanent hearing loss. Make sure to report ANY ringing in your ears immediately to your Oncologist. John unfortunately has hearing loss fromt he Cisplatin but it didn't show up until the end of treatment. John was also on 2 different anti-nausea meds as he was so "gaggy" and had so much nausea during treatment. Side effects of treatment are so different for everyone. Even with the PEG in John lost 30 lbs. Feel free to PM me if I can answer any other questions.

Angelia,

Tell them you want a pre Cisplatin hearing test so you can perhaps have a better chance proving your Tx caused a hearing loss if that does happen. I have permanent high frequency hearing loss and since I didn't have a base line to compare my post Tx hearing test to, my insurance company has basically said "tough".

How often will you get the chemo, weekly or 3 times during the rad?

I started loosing my taste by week 2. Heck I swear I could smell my throat burning after rad #1 but my doctor told me I was crazy. By week 4 which was right after my second chemo bag, I was nauseated and had pain and was on a total liquid diet. I was pretty bad off until the beginning of week 3 post Tx and that's when I walked out of my tunnel. So the the grand scheme of things I only suffered for about 7 weeks which, considering it's saved my life, isn't that bad.

I do not know yet how much Cisplatin I will have, but when I see my medical oncologist I will ask about a pre chemo hearing screening. I know most of you only had 6 weeks of radiation. My Dr. is having me do 8 weeks since this cancer reccured in less than 6 months. I still do not know all the details, but want as much in as I can get before going in. Thanks and keep all the info coming.

Angelia,
If you don't already have a baseline thyroid test, ask for a thyroid test that includes your TSH level. Many people have thyroid problems show up even years after radiation treatments and it is handy to know what your TSH level was BEFORE your treatments. It's a simple blood test.

Take care,
Eileen

Angelia, Steve had 3 doses of Cisplatin given over the 7 week treatment period. The first one he had nausea on about day 4 after he received the cisplatin and he slept most of this day. The 2nd cisplatin knocked him around quite a bit more and from about day 4 onwards he had nausea for close to a week and fatigue. 3rd Cisplatin was the same. He did complain about a buzzing in his ears following cisplatin but it went away within a couple of days.

Remember to stay well hydrated. We hooked steve up to bags of water given via his pump and peg, when his nausea was at it's worst and would just run it all day and night while he slept. Took a big load off my mind and gave him the opportunity to sleep. Also his mucous got worse after cisplatin but we noticed if he was well hydrated it didn't seem to be as bad. Hair loss wise his only thinned out. Not noticeable to anyone else but Steve and I. We always found the car ride to treatment after he had cisplatin brought on the nausea worse so I spent my time looking for less bumpy roads. The smoother the journey the better the nausea.

Try not to worry though. Everyone is different. We were expecting Steve to have bad radiation side effects from week 3 to 4 but he didn't have a sore mouth until week 7. The redness on his neck appeared about week 5. One of our radiation therapists told me that she didn't expect Steve to go so well. Because he couldn't talk and was in so much pain when he went for his first treatment she thought for sure he would suffer badly with the treatment, which luckily for him he didn't. He was able to swallow right through treatment and continued to eat icecream and drink apple juice right through as well. You'll get through this and don't forget if it gets hard then just jump on this site and we are all here to help you get through it. Take care of yourself and stay the strong woman I know you are.

Wendy

Angelia,

If your interested ask your RO how many gray units you will receive. Most of us got between 70 and 72 gys (which I was told was the max 3 years ago) which is spread over the the Tx period usually at the rate of 2 per day. So in my case I had 35 sessions at 2 per session or 70 gys. If you are having more sessions then you either will be receiving more than 70 or less each session.

There have been different approaches taken to deliver the radiation in the oral environment like doubling the sessions each Friday or doing 2 a day throughout the Tx but they usually only deliver the same 70 to 72 gys. It also used to be (just 3 years ago) that the patient could never be reradiated in a recurrence but I have seen many who have been given that option since I was treated.

Thes are good questions. I know that I will have radiation for 39 days. I see the MO next Tuesday. Saw my dentist today and he said everything looks good. Gave me some prescription strength flouride toothpaste that I have is eevery night before going to bed. I can't rinse it after I use it. The will be hard for me not to do. I can not stand anything in my mouth for very long.

Angelia,

You can't rinse it forever or perhaps just not for 30 minutes or so? Worth asking as all of the fluoride Tx's most of us use after we brush tell not to rinse or drink for 30 minutes after use.