Cisplatin Fears

I had nasiophargial scc stage
I had nasiophargial scc stage 3 in 2000. I was 28 and newly married so they said they were going to fry me to beat this(things have change since then, but treatment and drugs seem to be same). I always felt the best the night after Chemo, that was the only time I could eat. I developed "food aversion" and couldn't handle anything not even in tube(most can handle peg tube and get all nutrition from that). I lost 70lbs from start to finish, I had it to lose, but was still very thin when done. I too slept about 20hours a day, that is from rads not cisplatin. I believe I needed it for healing body and mind. I went into me and found God and toghter we fought, not everybody wants to look info and socialize, not everybody can work during..we are all different. But where we are the same is we don't give up, fight! Go to compass.com and apply for medical assistance, I am sure they will approve you, in the mean time a hospital can't refuse you if you go to ER, go if he needs it till you get aid. I will answer any questions you may have. Ps all side effects that I deal with still today have nothing to do with cisplatin, all rads. I couldn't get pregnant, but I adopted my daughter from birth and cut her cord and now she's 9, that's all it took from me, but the way I see it, it didn't take anyth8ng it gave me my daughter, Faith!

GOD bless you and your hubby,

Rachel

I Did Cisplatin, Too

Three big doses up front - then did "kinder, gentler" doses of carboplatin with rads.  I lost 70 pounds, too.  Even though I'm diabetic, my kidneys have consistently showed good function.  I had my hearing tested last year, and I test within normal ranges, so I don't have damage there, either. 

It helped me to get in some smoothies and liquid meals - on days when things tasted too bizarre or I was in too much pain to eat, I could get pain meds in and drink a smoothie fairly quickly (for somebody with an inflammed throat and mouth sores). 

Does he have any other health issues?  I know that some diabetics refuse to take steroids - they caused me no issues I'm aware of, and I think they helped a lot - the couple days after chemo, I'd feel better and eat better than the rest of the time.

I wish he could have Emend, but I'm not sure if he'd need to have good insurance for it.

As for waiting at the Emergency Room - my oncology nurse gave me a good tip - she said to list my cancer doc as my doctor when I sign in instead of my primary care physician, and I wouldn't have to wait as long.

I know it's horrible to see your loved one suffer, and to feel so afraid.  Asking for physical and emotional strength for you both. 

Oh - I slept a lot, too - not 20 hours a day, but a lot.  Did the high temps, too.  Do well.

Cisplatin effects

Hi, Yes it is scary. I had 3 doses of high level cisplatin around 30 doses of radiation in 2009. It can effect his hearing. It's scary in the beginning because he'll be left with a loud ringing in his ears that will come and go. My doctor said a lot of people say most of it goes away after about 3 or 4 yrs. believe it or not. He was right it does calm down over time. Tell him to keep that in mind if it really bothers him. Don't worry about the insurance, people can be very caring and helpful. Concentrate on your husband and hang in there.

acedamama said:

hearing loss and depression?

My husband mentioned his hearing was "off" today. Also, he said "this isn't me" which is so true - he was a consistenly active, always helping others in the neighborhood, joking, laughing kind of guy. Should I be concerned about depression? Does anyone have suggestions foods that might not taste horrible? I told him that everyday I will cook something different to see if we can find something that tastes ok, but also to keep him trying to eat. Thanks for all of your help. I will ask about Emend.

Thanks again!

I had ringing in my ears

that started about 2 months before I was diagnosed (I have NPC, and that could be why the ringing started earlier).....I finished all treatment the end of August, and I still have ringing in my ears.....however, I didn't lose any hearing...go figure.  Cisplatin can affect a person's hearing, so be sure and tell the Oncologist if he thinks it's affecting it. 

And.....yes.....treatment can cause depression, and there's absolutely NO sin in taking anti-depressents....I took them during treatment (and I have never had any problem with depression).....I quit taking them in September.  It's not a forever thing....treatment can be hard on both body and mind. 

So when he says food tastes horrible....does he mean it tastes like metal....or very salty?  Or does he mean that the taste is gone?  Not that it matters all that much, but I guess....tasteless is easier to get down than bad taste.  There isn't anything that is going to taste "good", at least in the way that things used to....but there are some things that go down easier.  For me, the blander the better....I seemed to be able to taste things that were bland, where highly flavorful foods were more tasteless.  Mac and cheese (with milk mixed in to make it soupy), almost any kind of soup....but creamy ones were best.  Cauliflower and cheese soup I could taste way into treatment.  Nobody loves eating during treatment, it's a matter of knowing you MUST eat to survive....eating takes on a whole new perspective.

p 

Side Effects

Cisplatin is in the cards for me. 7 weekly sessions starting the 18th. I have the an appointment with my MO on the 15th and I want to discuss any possible alternatives. Ringing in the ears and hearing loss are rather common side effects and I want to avoid those if at all possible for obvious reasons. I have to do a little research as my heart condition limits me concerning chemo drugs, as most are very hard on your cardio vascular system. 

"T"

donfoo said:

Why?

>> Ringing in the ears and hearing loss are rather common side effects and I want to avoid those if at all possible for obvious reasons.  <<

My MO is very proactive about minimizing, not necessary avoiding, side effects of the chemo regimens. In my case, he decided and the tumor board concurred to schedule 4 treatment cycles (3 weeks) rather than the more typical 3 cycles. I am confirming just now the actual dosage of each of the drugs: primary (TPF) and anti meds such as Emend. My understanding is the regime was the standard total dosage but divided into 25% rather than 33% dosing per cycle. In my case, it is working very well so far as the side effects I suffer are quite minimal to those generally reported. Zero nausea, zero vomitting and  ONLY notable side effects being fatigue for first 8 days of each cycle and some tinititus. My belief it is the reduced toxicity being delivered as well as my MO's strong belief to be aggressive in minimizing side effects with things like Emend IV dosing and several anti-nausea drugs taken during the 5 days of  TPF infusion.

Beyond that, there is not much you can do the avoid or control most side effects. Your body chemistry and condition and the chemo treatment plan are going to be the major drivers of what happens.

Best,

Don

 

Because

While I met my Sugical Onc prior to surgery and discussed the surgery and met with my RO and discussed the plan, I've yet to do with my MO. All I know is it's going to be 7 weekly Cisplatin concurrent with the rads. I'm sure she will be as aggressive as she can concerning the dosages while minimizing side effects and the risk to my heart. I fully expect to be infused with anti nausea drugs along with the Cisplatin and get anti nausea drugs to take afterwards.

I've been taking neurontin for the last week or so and it's finally starting to help with the nerve pain as well as pain in general (surprisingly, even non surgical related). My RO who prescribed it has been doing a study on it as it has proven to minimize pain from radiation treatments. If there is a drug (even clinical trial) that can minimize the hearing side effects of Cisplatin or a different chemo drug that would be just as effective minus the hearing side effects, why not consider it? The way I see it, I may lose my singing voice but I'm sure to have a speaking voice and the ability to play music but what good is that if I can't hear ~

"T"

 

 

jcortney said:

I doubt there will be a substitute

"The way I see it, I may lose my singing voice but I'm sure to have a speaking voice and the ability to play music but what good is that if I can't hear ;"

You'll be alive.

Take the best treatment you can get and then deal with your new lease on life.

 

I know that's cold, but Jack is sneaky.

 

Joe

 

 

 

 

Guess I'll just wait and see

It's not cold... it's reality. There's really no sense in speculating until I have the cards in my hand. I've come out great when dealt a Jack/Duece.. (ironic eh?).

I'll figure out whether to hold or fold after I see the next few cards.

"T"

 

fishmanpa said:

Because

While I met my Sugical Onc prior to surgery and discussed the surgery and met with my RO and discussed the plan, I've yet to do with my MO. All I know is it's going to be 7 weekly Cisplatin concurrent with the rads. I'm sure she will be as aggressive as she can concerning the dosages while minimizing side effects and the risk to my heart. I fully expect to be infused with anti nausea drugs along with the Cisplatin and get anti nausea drugs to take afterwards.

I've been taking neurontin for the last week or so and it's finally starting to help with the nerve pain as well as pain in general (surprisingly, even non surgical related). My RO who prescribed it has been doing a study on it as it has proven to minimize pain from radiation treatments. If there is a drug (even clinical trial) that can minimize the hearing side effects of Cisplatin or a different chemo drug that would be just as effective minus the hearing side effects, why not consider it? The way I see it, I may lose my singing voice but I'm sure to have a speaking voice and the ability to play music but what good is that if I can't hear ~

"T"

 

 

lower dose Cisplatin?

"T" ,  my son also received the 7 weekly Cisplatin chemo txs concurrent with the rads.  He completed treatment in Sept. 2012 and does not seem to have suffered any hearing loss or tininitis from it.  It was explained to us that when the Cisplatin is given one day a week during 7 weeks of rads, that it is a low dose of Cisplatin and its purpose is to weaken the tumor so that the rads are better able to destroy it.  When used in that way, Cisplatin is given at a more tolerable lower dose (with less side effects) and only used to assist the Rads (i.e. rads are the primary treatment modality and chemo is only secondary).  My son's rad onc was adamant that the Cisplatin be started at the beginning of the first week of rads because the rads do not work as well if the low dose Cisplatin has not been used to weaken the tumor.  My son's tumor was on his left false vocal cord (ary-epiglottic fold).  His voice seems strong and normal now, even though he was only able to manage a weak whisper in the final weeks of treatment and for several weeks after.  He did not have the "loss of ability to sing" concerns because his llivihood does not depend on his voice although he does play guitar and has been in several 'garage bands' with friends.  His singing voice has always been merely adequate ... never high quality like yours.  His speaking voice certainly sounds fine to me ... exactly like himself ... a source of much joy for me to hear when I speak to him by phone.  I stayed with him as his caregiver while he went through treatment, but my own house is a long distance away ... so now that he has NED status, we only keep in touch  by phone.   He has mostly been spending all his free time skiing ... so far he has been able to ski 40 days this winter.  The desire to recover enough post-tx to get out on the slopes this winter was a powerful motivation for him to regain his physical fitness ... and he did it.    "T, you also have some powerful motivations and from reading your posts you have great inner strength.  You have what it takes to survive and thrive.  Stock up on what you need onhand to help you with some of the things you can try to control ...  Mugard and other mouth care tips members of this forum have shared as helpful in avoiding mouth sores... ointments and creams to apply for exterior skin burning and redness ... pain control meds your doctors can provide if you keep them aware of when you need some numbing... all those things in the SUPERTHREAD that can pave your path to get through this.  Then try to relax as best you can and let those who care about you do some of the heavy lifting.