Hi All
I am about to start Cisplatin for the first time on Tuesday followed by RT on the same day, this will be followed by RT everyday (except weekends) for 7 weeks (35 episodes)with Cisplatin every Tuesday for 7 weeks.
Can someone give me a clue as to what to expect in the way of side effects for this period.
many thanks
Trev

I got a rash on my face that was successfully treated with minocycline. Also I have more ringning in my ears, which is annoying. I did not get mouth sores or hair loss. Nausea was avoided with the use of zofran,reglan and decadron. I ended up with anemia at the end of treatment. The cisplatin affected my blood counts so much that my doctor lowered my dose to 75%.

My husband was very nauseus the 1st time. He found using Emend helped a great deal for the last 2 doses, I would recommend to keep yourself very hydrated and if they recommend a peg tube to do it. It was a life saver for my husband. Its a tough treatment but you will get through it. We are all here to help you and to keep you in our prayers. Try to eat as much as you can with high caloric intake now. He did not have any problems with his ears. Each and every person is so different as you will come to know from these post. Keep a great attitude for that is 1/2 of this battle. God Bless LJ

I had a similar treatment protocol -- 8 weekly Cisplatin and 39 IMRT. I really had very few side effects from the Cisplatin -- a little fatigue about 36 - 48 hours after treatment, but nothing horrendous. I was given Zofran and Decadron prior to each administration, and had an Rx for Compazine. The Zofran and Compazine combined really prevented any problem with nausea. They do, however, tend to cause constipation. If they give you Decadron, be prepared to be a little hyper for the rest of that day -- it is a steroid.

Best of luck.

My Tx was very similar - I had IMRT for 7 weeks on weekdays. I had three rounds of Cisplatin - one every two weeks. Frankly it made me quite nauseous despite all the meds that others have mentioned. My experience was that the worst period was the two or three days after getting the infusion. I never did experience vomiting - just a nagging queasy/nauseous feeling that would never really go away. After a few weeks my doc gave me Marinol and that helped to some degree.

Of course the side effects of the IMRT are well documented on this site so you probably know what you're getting into there. Try to remember on the radiation that the side effects continue for a bit after radiation ends. They say it's typical not to 'hit bottom' physically until a few weeks after radiation ends and that was my experience as well. I tell you that hoping you won't get discouraged if you don't feel immediately better after the 7 weeks of treatment.

As you can see by the replies you've gotten so far there's a wide range of reactions to the Cisplatin. I was pretty sickly but not as bad as some have had it. Hopefully you won't have to battle the nausea.

I would add also that they promised me I'd lose my hair from the Cisplatin and I really didn't. I lost some on the back of my head at the bottom of my hairline (from sleeping on a pillow I assume) but that was about it.

Stay tuned in and let us know how you do.
-Steve

Trev,

As you can see I had 3 rounds of Cis 3 weeks apart and like some, the combination of the chemo and rad produced an uncontrollable nausea. The nausea can lead to dehydration, then constipation and certainly weight loss and general weakness.

You may have some slight thinning of your hair due to Cis but loosing the hair on the back of your neck comes from the radiation exiting your body. That hair will return but you will probably never have to shave again below your chin as the rad will kill all those hair cells permanently.

The main thing to watch for with Cis is the ringing in the ears which is cell damage. I did not recognize the ringing soon enough and I have permanent high frequency hearing loss in both ears and still experience occasional ringing.

Remembering that each patient can react differtly to the same combination of Tx alternatives, you still will do yourself a tremendous favor by drinking at least 48ozs of water and 2000 calories of "food" each and every day. Believe me I know first hand that goal can be hard to attain but do your best to reach it and you will avoid many of the nasty side effects I mentioned above.

Trev, I too had concurrent chemo and RT with 4 rounds of cisplatin, once a week. The injection itself was not a big deal and I could still drive back home after treatment but about two days later, nausea appeared and I couldn't stand the cooking smell in the kitchen. Make sure your doctor gave you the anti-nausea drug to take before meals, or else you won't be able to eat. I remember throwing up three times during treatment. Other than that, you will feel physically and mentally weak. Watch out for depression. No loss of hair in my case. Advice in above posts is worthy of noting and I hope that you can overcome all the discomfort very soon.

Karen

Thank you All,
I appreciaye the replies and will follow up on your advices, I am very uptight about the start of my treatment as it is only 2 days away, and at this moment I am feeling VERY tense, I will keep you in touch with the treatment ,again thanks
TREV

Trev
careful here! You are about to compare apple with oranges....

Of the responses that you got the majority had 3 cisplatin treatment every 3 weeks or so. This is NOT the same that they will give you.
When they give you cisplatin every 3 weeks a total of 3 times or so then this is quite different from getting is weekly. In that setting the concentration is 90-100mg/m2. If you get it weekly then the concentration that is used is 30 (typically) mg/m2. So in a weekly scenario you expect a hell of a lot less side effects. In order to compare anything you need to know the dosage and even then the reactions are individual. [I just wished that people would add the concentration information so that we can actually compare]
I had weekly cisplatin treatments (see my signature for details) and this was as far as nausea was concerned a total non event. I did not take any nausea medication at all and I was ok until day 6 (Wed) when I felt a bit queasy in the morning, Therefore I took one promethazine on Tue evening from that point on.
Nevertheless, stay hydrated and keep the nutrition up. Also, as David cautions, WATCH out for ringing, this can happen even with the weekly low cisplatin dose. 2-3 days after the first infusion I started to detect some ringing which by the time of the second infusion had abated (otherwise I would not have had it) However, then the ringing came back and we switched to carboplatin. (It is now pretty much gone)


You will probably find that the weekly chemo is the easy part.

Best Markus

Thanks Guys
Am not looking forward to the up coming treatment but OH well what must be must be, will keep in touch during and after treatment
Again thanks for your support
TREV

Trev --

Make sure your MO has discussed with you candidly about the possible long-term side-effects of cisplatin -- and I am not talking about nausea -- rather that the drug is both ototoxic and nephrotoxic. Thje majority of people taking cisplatin experience some sort of hearing issue, and for a significant number, this can be permanent -- high end hearing loss or tinnitis (ringing in the ears) or both. My husband's Hopkins MO would not give him cisplatin because he already has high-end hearing loss from infections as a kid. She gave him a newer, very similar drug, carboplatin, which does not cause hearing problems. (They tested his hearing pre- and post-treatment and there were no changes)

The kidney toxicity is generally prevented by use of IV hydration infusion during the cisplatin infusion, but they will continue to check kidney function and change chemo drugs if you start having problems.

The nausea issue will be helped but not eliminated by the weekly doses. Make sure you are getting a *serious* anti-emetic beforehand and that you have a script for the similar sort of drug (ones in USA include Anzemet, Kytril, Zofran) to take afterwards. A late-onset nausea 2-3 days after infusion was a complaint I heard a lot from folks getting cis- at Hopkins. Some were getting 7 low doses are you will be.

Since you are in Aus, you can use Difflam mouth rinse during treatment - swish several times a day - as the benzydamine HCl in that rinse has been shown in clinical trials to significantly reduce the extent and severity of mucositis (mouth sores) which will interfer with your swallowing and eating as you progress through RT. It can be bought at any chemist's. Also comes as lozenges. (Not available in USA, yet.)

Gail

I am not sure that it serves people well here to dispense information that is not backed by the data or proof. I have not seen any data that would suggest that a "majority of people experience some sort of hearing issue".

"Ototoxicity" is also considered a rare side effect. In some cases even the tinnitus has reversed (in my case, my hearing actually improved in subsequent audiology tests post Tx).
It is, however, contraindicated for people with hearing problems to begin with.

In regards to the kidneys: "Nephrotoxity" is a rare and often reversible side effect. There is a precaution that if kidney function is inadequate to begin with then Cisplatin is contraindicated. The creatinene cleareance test is to insure normal kidney function prior to starting ct.

It is also vital to remain hydrated (although I did not, had cisplatin and still had no kidney damage).

The MO who took me off Cisplatin when my hearing got weird told me that otoxicity was found in fewer than 1% of patients. I told him that made me special. He did not laugh.

I had cisplatin (though only two because my blood counts got so low), and had tinnitus short term; during treatment and now and then for the first year following treatments but have had no problems for a year or so. I don't think my heairng has been damaged in any way either (certainly not noticably). I was also told hearing loss was an uncommon side effect.

Nelie

Hi All,
Thanks, I had my first treatment today and I started with a visiy to the Specialist who read my results of the Blood Test and then sent m e off to the Chemo Suite for me Councillor to explain the treatment, Started at 3.00pm and had a break at 4.oopm so I could have my RT, then back to the Suite for the Main bits Manitol(30 minutes) then a Saline Drip(5 minutes)then Cisplatin(60 minutes) then for desert Potassium/mangonese(80 minutes)then a final flush and left the suite at 9.00pm, Boy what a day? now I have to have RT for the next 33 days with Chemo every Tuesday.
Will keep you up todate on the side effects
Thanks again TREV

Good luck, Trev. I hope you are doing well!

Hearing loss and other hearing issues is NOT a "rare" event with cisplatin, in fact, it is considered one of the two most common side-effects and any doctor saying otherwise is not being forthcoming.

I am not in the habit of posting material that cannot be backed up with data -- so here it is:

The RX drug page www.rxlist.com/cgi/generic/cisplatin_ad.htm
writes:

"Ototoxicity - Ototoxicity has been observed in up to 31% of patients treated with a single dose of cisplatin 50 mg/m2, and is manifested by tinnitus and/or hearing loss in the high frequency range (4,000 to 8,000 Hz). Decreased ability to hear normal conversational tones may occur occasionally. Deafness after the initial dose of cisplatin has been reported rarely. Ototoxic effects may be more severe in children receiving cisplatin. Hearing loss can be unilateral or bilateral and tends to become more frequent and severe with repeated doses. Ototoxicity may be enhanced with prior or simultaneous cranial irradiation [note this]. It is unclear whether cisplatin induced ototoxicity is reversible. Ototoxic effects may be related to the peak plasma concentration of cisplatin. Careful monitoring of audiometry should be performed prior to initiation of therapy and prior to subsequent doses of cisplatin." (In the latter case, how often does this occur?)

A recent paper by Rademaker-Lahkari et al, 2006, J. of Clinical Oncology 24 (6) is "Relationship between cisplatin administration and development of ototoxicity"

They write "Cisplatin is the most ototoxic drug known..." and note that a mean incidence of hearing damage is about 33%. However, since cited rates varied so much, they looked at whether dose and even, timing of doses, had a role as well as other factors. Their conclusion was that weekly doses were les apt to cause hearing problems compared to every two-week doses. Anyone starting cisplatin therapy should take a look at their conclusions, as they give other risk factors which might make cisplatin not the best drug for some.

(The other major side effect is nephrotoxicity, with a rate of 28-36% with single dose of 50 mg/m2 and "renal toxicity becomes more prolonged and severe with repeated courses of the drug. Renal function must return to normal before another dose of cisplatin can be given." per RX web site above)

Gail

Your math is faulty - 31% does not constitute a "majority". Practically all drugs have the potential for some form of adverse effect, especially ct drugs. It doesn't negate being vigilant and proactive with your treatment and carefully watching for side effects and notifying your oncologist immediately of any changes.

I still maintain that spreading fear is not the purpose of the forum. Many here have had Cisplatin without any serious side effects other than nausea.

PS I did the same Google search you did.

Let me jump into the fray here. We are in the midst of establishing a treatment plan and this hearing issue hits very close to home. Bill has a significant hearing loss in his right ear since some unknown factor (possibly a vascular incident)in late 1999 left him with short term incapactating vertigo (that resolved within a week) and longterm hearing loss. After consults with all our docs (primary, ENT, RO, DO) we have decided to go ahead with weekly Cisplatin treatments as we feel the need to hit this thing with all we can and worry about the hearing later. Bill has decided that dealing with a hearing loss (by the way, he has no sight in his left eye from an industrial accident 30 years ago...he passed FAA flight exam for pilots license with all of this!) is by far better than the specter of this cancer returning.

We are, of course, worried but have decided that when we come to the end of this process (no matter the outcome) that we did everything we could to have a good outcome. No regrets hopefully.

Deb

Hey Trev!
As everyone's mentioned, people suffer the side effects differently. For me - i had my Cisplatin/5fu combi every 21 days. I suffered with tinitus (still do, but no hearing loss), extreme nausea & vommiting & antiemetics didn't work for me (except for Lorazapam but that sent me away with the fairies!) Mouth sores, nose sores, nerve damage in my hands and feet, and a fair bit of hair loss. But i DID have a high dose due to suspicious nodes on my lungs, and as i'm young and can apparently tolerate it?! Basicaly i got everything going and invented some of my own for the sheer hell of it! But as you know, i came through it & i bared up cuz i had to! & i reackon you're tough enough to take it on the chin!
& now i feel fantastic!

All the best,
Michelle

Hey, Trev,

My husband is several days past his 2nd cisplatin/5fu/taxotere combo and has not had any tinnitus or extreme nausea. He did get nausea and mouth sores after the first round but then he got on a fentanyl pain patch, a couple of things for nausea including lorazapam, and meds for thrush and mouth sores. The second round seems to actually be easier than the first round. Another thing we have really focused on this round is hydration. He has been drinking as much water as he can and I have been giving him extra in his peg. I am very appreciative that folks on this board warned people to watch out for ear ringing, etc. as we might have viewed some side effects as transient.

Sophie

Trev it sounds like you did ok w/ round 1. I wish you the best of luck. Just remember everybody is different and tolerates medication differently. Be positive, you can overcome this disease!!!! Im due to start my treatments on monday w/ cisplatin.

Also a side effect----the cisplatin actually ENHANCED my taste. Did this happen to anyone else? After my first round, for 2-3 weeks everything tasted SO good I couldn't believe it. Then the tastebuds died, yet I got some slight taste back for several days after the two last treatments.

Just another "war story" and another medical opinion to add to the mix- When John went to his first chemo appt interview,[after two surgeries and radiation txs.] he was asked about current physical conditions that should be noted: They were #1. palsey in his hands that had increased in intensity over the past several years and #2. loss of hearing [age related or being around loud construction equipment ?] that had become more noticeable in the past 2 years. His Chemo Doc said " O.K- we will do Carboplatin rather than Cisplatin-there is not much difference between them in terms of results". So, John got Carboplatin, which did not work, and then Erbitux, which slowed things down and then he died. If I went to bed every night thinking that Cisplatin might have saved him, I would go insane. Amy in the Ozarks

Amy,

Please know that I know that you make tx decisions based on what the docs are saying and your gut. I have done so much research on this cisplatin vs carboplatin thing and still don't have a good answer. I only know that cisplatin in the "preferred" drug at this time. We all know as well, that each case is different and everyone reacts differently to the assaults on their bodies and sometimes all best efforts fail. I have read your posts and know that you and John gave it your all and I am so sorry that it did not work. You are right, you can not second guess your decisions. I wish you the best in your "recovery" from this terrible disease and loss.
Deb

Perhaps the numbers don't mean much unless you are on the bad side of them. As for the Cisplatin, I experienced (and still do) ear ringing after one round. My MO then switched me accordingly. I did not suffer from any degree of hearing loss but do have an increased level of ringing.

Bill D.

Hi, DEb and all- I just reread my post after reading your post, Deb.I don't think my intent was well expressed. Yes, upon occasion during our 2 yr.battle with SCC, I have tormented myself with the "what ifs":[we could have gone to different Docs, we might have had a different protocol of tx, why was JOhn's tx different than xyz's, why was his outcome death?] But those are grieving questions. My intent in the post above was to point out that there are still as many different approaches and opinions to treating this disease as there are Docs.WE, as patients and caregivers, oftentimes beat ourselves up agonizing over what to do before we start this journey, never realizing that the medical profession is on a journey too in regards to this disease. Amy in the Ozarks

A real comparison between cisplatin and carboplatin is needed, the question is will this ever be done (for H&N cancer) and who would pay for it. BTW: In order to get a drug approved a company does not have to prove that it is more efficient than an existing drug... oh no it just has to be better that nothing!
cisplating is an ancient drug that has been discoverend centuries ago. (FDA approved in the 70s). Carboplatin is the "new kid" on the block (FDA approved in the late 80s). Chemically they are very similar.
Many MO are more comfortable with cisplatin because it has been around longer and therefore there is more data. What is interesting is that when they switch you from cisplating to carboplatin they usually also tell you that it is just as effective!!
It would be nice if a real side to side comparison existed. If anyone is aware of a direct comparison.... please post.

Trev if you are worried about side effects you have to consider the amount of drug that is given. In most of the above post that info is missing, but you can assume that in a weekly setting the concentration is much lower than in a 3 week cycle and so are the side effects.

M

Markus, your statement about clinical trials is not correct. It has to show that it is at least as good as the existing standard of care treatment, not better than nothing. Phase three clinical trials (which may be the last step for some drugs even through there are stage 4 trials) indicate how the new drug works in comparison to the existing standard of care drug. Some patients get the standard of care drug, some get the trial drug. If a new trial drug cannot demonstrate that it is at least as good as the standard of care drug, it is dead in the water and will not make it to market. Many times it is dead even if it works no better or worse, but the same as, because long term side effects are unknown. http://www.oralcancerfoundation.org/facts/clinical_trials.htm

Gary --

My math is not faulty -- the *mean* of ototoxicty is 30-33% -- the *range* is much greater and from various published papers ranges from 2% to over 60%. The *mean*-- about 30% -- is medically a VERY significant side-effect and not to ever be considered rare. True, some of these problems eventually reverse but some do not...

Yes, many people take cisplatin with no harm but many do have problems and a lot of them have not been informed up-front of the potential problems or other options. Some are given the drug that (according to other risk factors such as alreay-existing hearing issues or worse, kidney problems) should not take it, either.

Being fore-warned is fore-armed...

Gail

Hey mates!

While I have not personally consumed the cisplatin drug, however, I have read a lot about it. I can share some insightful information and would be glad if it could be of any help to you guys. Some points to ponder:

The chemo drug cisplatin is used to manage and treat solid tumours and hematologic malignancies.
It works really well for the treatment of advanced cancer of the bladder, ovaries, or testicles.
It interferes with the growth of cancer cells, which the body eventually destroys.
This medication comes in 2 dosage forms: powder for solution or solution.
Some common cisplatin side effects are blood in urine or stools, dizziness, change in frequency of urination or amount of urine, fever or chills, loss of appetite, weakness in the arms, hands, legs, or feet, and increased thirst.

Additionally, some side effects may occur that do not need medical attention. They go away during treatment as your body adjusts to the medicine. Also, if you feel unusual side effects that doesn’t go away, like indigestion, swelling or inflammation of the mouth and rash, consult a doctor rightaway.

I hope this information was helpful to you. Always remember that batting cancers and tumours can be challenging; however, I encourage my mates to keep fighting.

You’ll get well soon and surely, the sun will rise one day super soon!

Isaiah 40:29: "He giveth power to the faint; and to them that have no might he increaseth strength".

Hugs & Love!

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