I get my first Cisplatin treatment on Tuesday - they are being given in conjunction with another 33 radiation treatements. I remember vividly the radiation - but what should I expect from Cisplatin? Any help would be appreciated.

Donna

My husband had one treatment of Cisplatin. They had him take anti nausea medications before, during and after the treatment. And, they gave him extra hydration.

The unexpected thing for him is that one of the meds they gave him prior to the Cisplatin made him really, really sleepy. So, I was glad I was along to drive him home.

Also, I remember it was a long day and we brought along board games and cards. We managed to play until he fell asleep somewhere along the way.

Some people get a lot of nausea. He did not get any. In fact, he felt quite well that following week. I wish you well!

Good luck with the treatment Donna.
I was told, with any chemo, water, water and more water! And to take anti-nausea meds BEFORE feeling sick, so as not to set up a vicious nausea/not eating circle.
Brenda

The reactions to cisplatin can vary widely.
It also GREATLY depends how much you are getting. Some people are scheduled for 3 tx 3 weeks apart while others get it weekly. If you are getting this weekly (and only a third of the dose) then the side effects are normally less.
I had 2 cisplatin treatments. About 3 days after the first infusion I started to get the ringing. I informed my MO and he figured that this was just in my head (no kidding!!). Well it went mostly away by the time the second infusion was due. And then it got really annoying. We switched to carboplatin. Which they then they tell you is "just" as good as cisplatin but with fewer side effects...... If you can tolerate it stick with cisplatin there is more data for it. I never felt tired from the cisplatin, however consider they I had a lower dose because I got it weekly and it was at the beginning of the rad tx as well. I got all kinds of nausea pills which I did not end up using at all. For the cisplatin I only had trouble exactly two days before the next treatment and I took a pill the night before. Once we switched to carboplatin I did not even have to do that. Although I got both rad and cisplatin at the same time I would rate the chemo as "benign" compared to the rad tx later on.
Best

Markus

The only side effect I got from was from the anti-nausea meds themselves, not the cisplatin. The meds can cause extreme constipation in some people. Once we got a grip on that after the first treatment, I didn't have any problems.

Donna,

I had 3 Cis' 3 weeks apart. The first was before my first Rad Tx and the last was before my last Rad Tx. All were given before I went to the rad room so those were 3 very long days.

I was given a very strong anti nausea med that cost me $100 a pill. I had to take one before each Tx and then 1 a day for the next 2 days. I was told not to let my wife come in contact with any of my body fluids including sweat during the 3 days after each Tx.

I really had no reaction to the first bag but the 2nd bag right before my 16th rad tx hit me pretty hard re nausea. I had a hard time with nausea from that point on so it could have just been me.

I also experienced ringing in my ears but I didn't recognize it at the time. I mean it's not like RINGING in your ears but once you finally recognize it you can see why it's described as "ringing". I didn't recognize the ringing as ringing until after my 3rd Tx and that's when my MO reminded me that he had told me the ringing is actually damage being done to your ears. He said some experience it and some don't. He told me that if I had told him sooner he would have switched me to Carbo P because as he put it, it's just as effective as Cis but without the hearing loss potential. I asked him then why in the world didn't he use Carbo from the getgo and he said that there was more published results on Cis. Oh well, I did end up with some permanent high frequency hearing loss but like many other side effects we have to put up with this cancer Tx, it's not that bad.
I would still have preferred not to have the HF loss so if I were you I would ask about Carbo.

Check out the FAQ section I moved a topic about Cisplatin from the archives

Gary,

Excellent thread! Thanks!

Joy

I immediately experienced ear ringing which I still have today a year and a half later. I was warned to watch for the ringing at the time and I told of it accordingly. I was taken off Cisplatin at that time and also put on Carboplatin.

Bill D.

Thank you all! I now feel much more prepared and aware of what to watch for. I now feel much less apprehensive about the treatment. You guys are invaluable!

Donna

Cisplatin (AKA Platinol) is some miserable, rotten, stuff to be sure but it has a good, proven, track record for doing its job and adds an estimated whopping 13% to your 5 year survival rate when used in conjunction with radiation.

The hearing loss issue is fairly rare and the radiation can damage the eustacian tubes for a time and cause the same effect (it causes fluid buildup behind the ear drum - this is also why many complain of ear ache). Make sure that you report any changes in hearing to your oncologist immediately.

I should mention also that since the archive thread was written, some institutions give more frequent but smaller dosages and some seem to tolerate that better.

Here's the latest from the NCCN http://www.nccn.org/professionals/physician_gls/PDF/head-and-neck.pdf

After your treatment with Cisplatin, keep taking your anti nausea meds daily. The trick with that is they prevent nausea before it becomes a problem. If you are getting Cisplatin every 3 weeks it will be a higher dose. Thats how mine was given. I did ok until about 2 weeks after the first dose. Best of luck to you with your treatments. Before you know it, you will be finished.

That NCCN guideline also resides on the OCF site in the treatments section on this page http://www.oralcancerfoundation.org/treatment/guidelines.htm

We're not sleeping here...we keep things current.

Yes we DO have the most current links but my link was specifically directed to the Cisplatin page so she wouldn't have to search through the hundreds of pages on the NCCN Oncology Practice guidelines site.

Everyone here should read the NCCN Oncology Practice guidelines (in Brians post/OCF link) for whatever OC you have as soon as you are Dx'd and well before treatment planning is started.

It is critical for 2 reasons: 1. Know ALL of your treatment possibilities and 2. Have intelligent questions to ask of your medical team.

The NCCN guidelines are pretty much the "Standard of Care" for cancer diagnosis and treatment (for ALL types of cancer).

There are also sections for stress and adult cancer pain management in the guidelines.

We have many patient advocates here but the bottom line is that YOU have to be your OWN patient advocate. The ultimate choices rest in your hands. Whether you live or die - rest in your hands. It's always been OCF primary mission to equip patients with the knowledge to be their own advocate.

Please - don't play games with your life - GO to a Comprehensive Cancer Center or NCI Cancer Center for diagnosis and treatment.

Gary said:

Please - don't play games with your life - GO to a Comprehensive Cancer Center or NCI Cancer Center for diagnosis and treatment.

I can't agree more. As I've said many times, I went to 5 different cancer docs and were given 5 different Tx alternatives with 5 different "estimated survival chances" ranging from a Chemo doc (treated me for cat scratch fever) to a neck surgeon (ND and nothing else and a 50% chance of surviving) to my ENT ( radical ND, chemo and rad and a 60% chance) to Moffitt (no ND, Chemo and Rad and a 90% chance). Back then I really was a lost sole not knowing what to do, where to turn and scared out of my mind. My wife was pushing me to "stop being a baby and have them (my nodes) cut out" but I kept saying no because of the conflicting opinions. I am so lucky I had great insurance and I kept asking questions and searching the web and found my way to Moffitt. Unfortunately, IMO, many posters that I have met since coming here to this site are not so lucky and end up treated at a less desirable facility. I am convinced I easily could have been one of them and it's scares me to this day. I have done a few radio and TV shows locally and I have pursuaded at least 3 off air that I know of to go to Moffitt. I just wish I could reach many more cancer candidates before they perhaps make an uninformed decision.
_________________________

I have a question that needs answered. Is it necessary to habe someone go with you as a driver when you get RadChemo treatments? If so I have to find a driver and fast.

Jim,

In Bill's case, he was very able to drive himself for about 3 weeks but needed me from that point on most of the time due to lightheadedness and just generally feeling lousy. The American Cancer Society has drivers available to help you if you can't find anyone else..lovely volunteers that take you and wait if you have rad treatments or come back if you are having chemo.

I would start now checking into this...you won't need it right away but you will most probably need it at some point.

Good luck, Deb

Jim: Buzz drove his Volvo stationwagon 90 miles round-trip for 28 IMRT and 6 chemo sessions. I think you might be okay to make the trip in the very beginning, but DO have a backup driver, just in case you aren't feeling up to the drive. You also must take into account the traffic situation, i.e. city vs. rural driving. How far must you go for treatment?

Jim,

I drove almost the entire time but then again I am MUCH YOUNGER than you. LOL Anyway, there wer many days that I shouldn't have gotten behind the wheel especially for a 90 mile RT but hey, no one could tell me anything. Not Mr Stubborn. I also was pretty antisocial and really didn't want to be around people looking and feeling the way I did. Sometimes I had to pull off the interstate shoulder and toss and sometimes I would forget what had happened the last mile or so. SCARY to say the least. Don't be to proud to let people help.

We all respond differently to treatment and the meds you are taking factor in as well. My experience here is that the vast majority of people needed drivers, especially from 2-3 weeks into treatment on out. My wife drove me the 60 miles each day to treatment but I also had back-up drivers on tap. ACS reimburses for some of the mileage (I beleive it has a $200 cap - you do have to be at least 60mi from the treatment center, round trip)) as well as providing drivers.

Ditto to what Gary and David said;
at the very least have a backup plan.
I was capable to drive drive to the rad TX by myself, although on 4 or 5 occasions during the first 2 weeks I had my brother or wife come along. Naturally, they were driving then. The fact that I did this provided some activity (which was good especially later on when you do not feel that you have any control). However, be especially careful if you use heavy pain killers! It is not a good idea to drive if you are knocked out! It would be very bad to have an accident during RT. My round trip was 40 miles and that with little or no traffic.
On the more funny side... the only time I ever managed to get out of a speeding ticket was when I was on my way to for an IMRT treatment. (Officer give me a ticket or do not, but whatever you do do it quickly please I need to go for radiation therapy for cancer and I am late; that is why I am speeding.....)


M

Oh Markus - I can't stop laughing at the picture under your name. Everytime the penguin gets knocked over it sends me into a fit! But he just gets up and keeps on going and keeps on getting knocked over! Now, that should be a lesson to all of us who keep fighting the big "C". Thanks for making my day!

Anne-Marie,
I am glad you liked it. This sequence made the round on the internet a couple of years ago and I was surprised to find it on the new OCF website; so naturally I had to grab it.

M

Thanks for the advice all and david,, I bet I'm as hardheaded and stubborn as they come.. LOL Older than you or not. I have always been independant and hope I can make this interstate even it has a very high accident rate David I like your humor . You have given me quite a few chuckles. You old turkey neck LOL

That's MR Old Turkey Neck to you !!

LOL Mr turkey neck it shall be, I hope we keep our humor through out this garbage and can always laugh.

I'll have to check on that Gary. The senior center does take people to medical appointments so I'll check that out too. My trips will be just short of 60 miles but it's worth looking into . Thanks for the info.. And David,, I just can't picture you as antisocial LOL

Jim,

More like a badger. I felt anger for getting cancer. I felt ashamed for being sick and weak in front of my wife and family. I was scared that I would die. So I just wanted to be left alone to deal with all this myself. I didn't want the kind neighbors and friends offering me all sorts of suggestions, opinions and help. Just leave me alone...take my subtle hints and go away but if you persist then I'll lash out at you because I am angry and hurt. Geese, I'm getting all worked up. Where's an employee I can take it out on !!

LOL David, I understand those feelings very well. Send me one of your employees so I can vent too. have a great day.

Well I had my first Cisplatin treatment yesterday and was a bit surprised at how they do it - so maybe I need to learn to read?? I had 2 hours of hydration, then the cisplatin, then another 2 hours of hydration. I then had to go back today and am due there tomorrow for hydration. I have had no nausea - am taking Kytril? and another drug that starts with a "p" and ends with an ozone or some such. So far so good. My radiation treatments seem to be taking forever as they are still taking multiple x rays and images to get the next 31 treatments lined up/confirmed. Makes me feel a bit uneasy and I thought they had done this before - but they say it is normal with some new procedure they are doing. I'm all for advancement and if I hadn't had radiation before I guess I wouldn't think anything of it. Just wanted to let you all know how it was going. So far, so good

Donna

Donna,

My first one went OK as well. My 2nd one 3 weeks later and after 15 rad Txs did me in. Did you say you were getting them weekly or every 3 weeks?

I dreaded chemo days because I drove 45 miles to get there, then I had blood taken and then was in the chemo room for 4 or 5 hours and then had to get my rad Tx which was also on a Monday therefore rad measurement day and then drive 45 miles back home. I would leave my house at 6am and wouldn't get home until 5pm. Thanks for the memory. LOL

I hope all yours goes without incident.

Donna,

You should be able to get a list of what they are infusing...if you care to know...its all computerized these days so they could print it out for you easily....even giving you the dosages and such.

Down the line, you will find it is hard to separate the symptoms you will get arising from your chemo and the ones from radiation. After a while, it doesn't really matter...you just go into survival mode and do your best to stay hydrated and somehow get the proper nutrition. The only symptom Bill had that we knew positively was from the chemo was hiccups. He would get the most outrageous case the day after each chemo (weekly.) The MO finally put him on thorazine to quiet them.
Glad you first one was uneventful...stay strong, Deb

Are you sure that there wasn't a small bag of Zofran introduced during your hydration process?