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.

They told me not to rinse at all just go to bed.

Angelia, dont forget everyone is different. We all respond to treatment a little differently than someone else. A few on here sailed right thru tx. Think positive!!!!

my brother was diagnosed with stage iv tonsil cancer with 2 lymph nodes affected hpv16 type he started chemo on oct 26 and radiation the next day decided against the surgery and is scheduled for Cisplatin x 3 with concurrent IMRT x 35, (50 Gy)
the main problem right now is that it is affecting his hearing which he has now been told is irreversable
has anyone else dealt with this and found a solution?

My brother's UPPER end hearing loss is already being affected (in the 8k-10k range). He also has tinnitis kind of nasty.

Cisplatin is a highly nephrotoxic drug that helps shrink tumors while also wreaking havoc on hearing.

The effects are:
a) cumulative (the more you have, the worse it gets)
b) irreversible
c) progressive for up to five-ten years after treatment and,
d) not helped by hearing aids.


He's learning this later than planned on. Like after his first treatment of chemo with Cisplatin.
any advice would be appreciated

I have a similar concern as with the case of maureenbe's brother. I had 3 cisplatin sessions, May this year, at 3-week intervals together with my 30 daily RT sessions (which I already completed June 1st).

I'm a newby to this forum and was not aware that cisplatin had hearing side effects, until I read a few posts about this. In fact, only recently had I noticed hearing ringing noises, like right now as I type this...faint, background-like continuous high-pitched hissing sound which seem to come from the direction in my upper left ear...the kind you experience after being exposed to loud noises for some time, and then went to a relatively quiet place.

So if anyone had a similar experience, I'd like to find out the extent of the side effects of cisplatin on hearing.

Thanks.

Jojo

I think if you look at Davids posts you will learn quite a lot about this problemas i understand he still suffers from high pitch hearing loss from cisplatin,and i know he always mentions it to people about to start chemo using this drug.

Christine, thank you. I am trying to remember tjat I may not have any problems, but the side effects my RO talked about do not make it sound promising that I won't have them. I just do not know qhat I am going to do for three months not working. My RO does not want me teaching during seasonal flu season since my immune system will be shot.

Angelia....
For those three months I know what you will be doing. Taking care of yourself! For the first month you probably will feel weak. After that its a little better everyday. I know you will get thru this just fine. Your age plays a big part in how fast you will bounce back. You are young and sounds like otherwise a healthy person which will make it easier for you.

Angelia and anyone else on Cisplatin,

If you experience any kind of hearing loss or ringing in your ears, you need to let the doctor know immediately and they should switch you to carboplatin which does have this side effect.

Take care,
Eileen

Maureenbe and Jojo,

In the future please start a new Topic if you want to get the maximum feedback and not have to read other comments that don't concern your particular topic.

That said, yes Cisplatin is known to have the potential for causing permanent hearing loss but like so many things associated with this cancer's Tx, it doesn't affect everyone or affect everyone the same way. It's a shame that all MO's don't warn everyone or don't prescribe a pre Tx hearing test so that the damage can be more easily defined, but they don't.

The damage seems to be associated with the "ringing in the ear" symptom so as Eileen said as soon as you think you experience that notify your MO and perhaps he will switch you to Carboplatin which is supposed to be just as effective as Cisplatin but without the side effects. I know what you're going to ask but don't because no one can give you a reasonable answer to that other than Cis has been around for a longer time and therefore is more tested and of course the goal is to kill the cancer so I guess that's why MO's continue to use Cis vs Carbo.

I will talking to my ENT and my MO about pre-TX hearing screening. I have yet to meet the MO. I go see him Tuesday. It just seems like it is taking way to long to get things done. I would like to start kicking this thing now.

Thanks, David, for your feedback on the hearing side effect. Incidentally, I will be at the hospital today (for a different check up) and will try to schedule a session with my chemo oncologist.

Sorry if I seem to have started a different topic on this thread, but I thought I was replying on the same topic regarding cisplatin side effects, per Angelia's initial post on Nov 01 ("I was just wondering if you could tell me some of the side effects of IMRT and cisplatin."). Perhaps I misunderstood.

Jojo

I mirror David's comments. My Oncologist also warned me about the side effects going into the treatment, telling me that by the time it's caught (I notice it) it could be too late. Sure enough, it happened. Hearing aids help some but most of it is high pitch loss and ringing. Being fatigued or stressed seems to add to the ringing. The plus side, the treatment(s) did the job! It may not be for everyone but as mentioned earlier there must be a reason it's still widely used, success rate at what it does.
Best wishes,
Steve

jojo, no need to apologize.

Jojo,

Sometimes posts start in one direction and turn another way. I was just letting you know that sometimes it's better to start your own fresh post where you stand a better chance of getting fresher comments.

BTW unless you hate on somebody or try to use this site for personal gain, there's no need to apologize.

For those of you who have tinnitus from treatment I can tell you that it will bug the hell out of you for awhile but you will get used to it and only notice it when someone says something about it or you read about like I just did. I�ve had it for almost ten years. It wasn�t from the cisplatin, but from loud music, chain saws and other things like that. You will have a tendency to want the sound on the TV or radio up a little louder than your spouse, but I think that�s always been true with me.

I am having a Pre-TX hearing exam on Tuesday. I asked my ENT about it, and he said it generally doesn't happen, but that it would be a good idea to get a base line. He also said that i would not lose my hair. Is that true? Is hair loss a side effect of cisplatin? I still do not know exactly whet regimen I wil be on as I have yet to meet the MO. I go to him on Tuesday as well.

Thanks, Ray. In my case, since I've had my operation in March, I hadn't been exposed to any loud noise (from music, bars, pool halls, urban traffic, etc), in fact, it has been literally a quiet life for me since then. I did notice the ringing in my ear just recently and was completely unaware that a possible side effect of cisplatin is hearing loss. I've never heard nor read about this before, until I saw some of the blogs here. At this point, I'm not worried or stressed about it, i't simply news to me. I have already scheduled a hearing test together with my next ct scan, as prescribed by my doctor during my recent check up.

Angelia,
Prior to my treatment, a lot of people, including my oncologist, did warn me of possible hair loss as one of the side effects from chemo (cisplatin x 3, in my case). However, I was fortunate enough not to experience this...or any of the 'usual' side effects like nausea or vomitting. I just felt extremely tired after each session, my body was telling me to rest, and it wasn't unusual for me to get minimum 12 hours of sleep. My RT did more damage to me than my chemo.

Jojo

I was advised before chemotherapy that "there was a good chance that my hair would probably thin out quite a bit due to cisplatin", and it did thin out.

There were not chunks of hair coming out or anything like that, otherwise I would have probably been really upset - it was only noticeable to me when I was washing it or brushing it - unless I mentioned it, no one else except my hairdresser and I noticed it.

Like Jojo, I was fortunate enough to escape the other possible side effects from the chemo. Radiotherapy caused more damage to me than the chemo.

Karen

Hi Angelia. John had EXCELLENT hearing before the Cisplatin. He does have hearing loss from the Cisplatin (upper ranges). His hair did thin out a lot from the chemo but is filling back in. John also lost hair along the base of his neck from the radiation. John's major side affect from the radiation and the Cisplatin was the constant, excessive mucus and nausea. John was on both Zofran and Compazine all through treatment and up to a month past treatment. You can do this! John is almost 7 months out of treatment and doing GREAT! The feeding tube was only in for 5 months. He has gained 5 lbs. back from the 30 he lost. Food taste and feel still isn't back to normal but is getting better. Hang in there! Hugs, Wanda

Angelia,

I was never warned about hair loss from Cis and I never even had thinning much less loss EXCEPT for the hair on the back of my neck where the radiation exited was lost temporarily and my facial hair fell out and only came back above my chin line. That was also due to the rad.

I had 7 weeks of IMRT. The first 4 weeks were a breeze but at week 5 the mucos showed up and was a big problem for me. I had a difficult time getting much sleep as I was constantly gagging and coughing. However, I did not get any mouth sores and never had any pain. When the mucos got bad, I quit eating via mouth and used the PEG exclusively for the next 5 weeks.