Cisplatin Fears

My husband is in the first six days of treatment for SCC of the larynx with cisplatin and radiation. He is down to 98 pounds and sleeps about 20 hours. He runs a fever every evening just at 99.5. He says everything tastes disgusting even water. He has another cisplatin treatment in 2weeks and radiation every day. We ahve no health insurance so we are at the mercy of "free health care" their answer for everything is "go to the emergency room". We've been there, sometimes waiting for 8 hours to be seen. I'm so fearful that this "treatment" wil kill him. If there is anyone out there that can give us (ME) some hope. I would be so grateful! Thanks

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Comments

  • denistd
    denistd Member Posts: 597
    Cisplatin

    I was diagnosed with larynx cancer in March of 2009, my treatment was 35 rads and 3 doses of high dose cisplatin. Came through it all except for some damage to the kidneys from the chemo, but that is stable,  I did not get nausea, never threw up, ate all the way through, but I had to use my peg to get 2000 calories, lost 25lbs, neck never got burnt, did get some mucous and dry mouth. Make sure they give you anti-nausea pilss, I had emend before each round of cisplatin, worked great, creamed my neck every day with biafene. here it is 2013 and I have not had a problem with my larynx since, my voice is okay, my dry mouth is gone. Not having insurance can be overcome, speak to all parties concerned and see what you can work out, people are wonderful and understanding, especially doctor and hospitals. Good luck

  • rachel12yrsuv
    rachel12yrsuv Member Posts: 435
    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
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    Welcome Ace...

    First I too had three doses of Cisplatin, along with three other chemos..

    I'm not really sure what yourr asking actually as for the Emergency Room...?

    The Cisplatin, Rads and treatment are tough but doable and with very good outcomes.

    As for the weight loss, what was his weight before? Do they have him on a PEG...(feeding tube)? If not, that is definitely something to talk to your MD's about, he can't afford to lose that much weight and not have complications.

    He has to take in alot, ALOT of hydration..., and of course calories... Ensure, BOOST, and similar are excellent alternatives to solid food, each can having around 350 calories.

    Again...can't stress hydration and calories enough.....

    Best ~ John

  • acedamama
    acedamama Member Posts: 12
    denistd said:

    Cisplatin

    I was diagnosed with larynx cancer in March of 2009, my treatment was 35 rads and 3 doses of high dose cisplatin. Came through it all except for some damage to the kidneys from the chemo, but that is stable,  I did not get nausea, never threw up, ate all the way through, but I had to use my peg to get 2000 calories, lost 25lbs, neck never got burnt, did get some mucous and dry mouth. Make sure they give you anti-nausea pilss, I had emend before each round of cisplatin, worked great, creamed my neck every day with biafene. here it is 2013 and I have not had a problem with my larynx since, my voice is okay, my dry mouth is gone. Not having insurance can be overcome, speak to all parties concerned and see what you can work out, people are wonderful and understanding, especially doctor and hospitals. Good luck

    THANKS!!!

    Thank you for the encouragement! After hearing so many stories of what could go wrong - I just needed to know there is a light at the end of this dark and dreary tunnel! So glad for your success and may God continue to bless you!

  • acedamama
    acedamama Member Posts: 12

    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

    THANKS!!!

    Thank you so much Rachel for your story and encouragement. It is so great to hear God has blessed you and I hope they continue! God Bless!

  • acedamama
    acedamama Member Posts: 12
    Skiffin16 said:

    Welcome Ace...

    First I too had three doses of Cisplatin, along with three other chemos..

    I'm not really sure what yourr asking actually as for the Emergency Room...?

    The Cisplatin, Rads and treatment are tough but doable and with very good outcomes.

    As for the weight loss, what was his weight before? Do they have him on a PEG...(feeding tube)? If not, that is definitely something to talk to your MD's about, he can't afford to lose that much weight and not have complications.

    He has to take in alot, ALOT of hydration..., and of course calories... Ensure, BOOST, and similar are excellent alternatives to solid food, each can having around 350 calories.

    Again...can't stress hydration and calories enough.....

    Best ~ John

    Thanks!!!

    Great to hear that there is hope. We have a feeding tube and are still geting used to making it work. Thanks for all of the advice and kind words! God Bless!

  • phrannie51
    phrannie51 Member Posts: 4,716
    I had nasopharyngeal cancer, like

    Rachael....with 3 doses of Cisplatin along with 35 rads....and then 3 Cisplatin/5FU treatments after rads were over....the chemo treatments were every three weeks.  Like Denis said, the sleeping has a lot to do with radiation....I slept a LOT during treatment.  Skiffen brought up the bottom lines during treatment......LOTS of hydration....and as many calories as you can pour down that tube.  Make sure he swallow something everyday....even if it tastes like crap, he needs to keep his swallowing function going.  Water tasted salty to me, but I still drank it.  If Ensure or Boost seems kind of thick for the tube, mix it with milk to thin it (I used a paper cup so I could fold it at the top a little to make pouring easier).  If he is already down to 98 lbs (don't know if that is a typo), he REALLY needs to get his caloric input up, to at least maintain that weight.   Let him know that he is not eating for pleasure any longer, it is a matter of survival....hopefully food and water will simply become tasteless rather than disgusting... 

    For nausea I had Emend, Zophran, Compazine and Atavan (Lorazipam) which was on a strick schedule everyday for 4 to 6 days after chemo. 

    Is there a social worker at the hospital that you can use to get more in the way of help? 

    Yes...there is a light at the end of this tunnel.....it is a matter of one day at a time....one foot in front of the other....that's what will lead you to the light.

  • Pam M
    Pam M Member Posts: 2,196
    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.

  • corleone
    corleone Member Posts: 312 Member
    I was diagnosed with

    I was diagnosed with Nasopharyngeal carcinoma, stage III (T2N2), undifferentiated type, on 14-Jun-2012. I had radiation 70 Gy: 35 sessions (7 weeks, finished on 05-Sep-2012) concurrent with Cisplatin days 1 and 22 (attempted on day 43, but the last dose was not administered due to toxicities (hearing loss ~50%)). Adjuvant (post radiation) chemotherapy: carboplatin (instead of cisplatin that was too toxic for me) on day 1 plus fluorouracil by continuous IV infusion on days 1-4 every 4wk for 3 cycles. Finished chemo on November 26th.

    During the treatment I had a huge appetite but not able to taste anything (starting with week 3 of radiation until 1 month post radiation), very frustrating. The worse symptom was nausea, but with proper medication (don’t forget to ask for EMEND) it was manageable. Pain was also manageable (remember I didn’t have any surgeries done). I used to dream a lot about food, during this time. 1 month after radiation the taste for salt started to come back gradually; 2 months post, taste for sweet; 3 months, for bitter. The saliva is only ~20% back, but I was able to eat liquid and semisolid food starting with week 3 post radiations. During the day, the lack of saliva is not bothersome (I sip water from time to time, especially when I have to speak). Now I eat almost any food, solid or not (with water or tea) and taste I would say %80 normal (except that the taste fades away after a few bytes). I no longer have a G tube (removed January 8th) but it was useful during the worst phase of the treatment (last 2 weeks during and 1 week post radiation).

    I lost 20 pounds during treatment, now I have 138 pounds. The weight does not seem to increase, regardless of how much I eat, but my wife is very happy with that.

    The energy level started to come back (again, key word – slowly) 1 month post last chemo treatment. Now it’s much better, I started working again recently.

    The side effects that are still troublesome (now 3 month post treatment) are: hearing loss (~50%, wife not happy, she says I don’t listen to her) and xerostomia (dry mouth). I can’t open my mouth as I would like (I have trouble eating large foods) but I can still stick 2 fingers in my mouth (should have been 3).

    In my case, Cisplatin was ototoxic (hearing loss) but I didn’t have any other long lasting side effects.

    I am anxiously waiting for the MRI follow-up in a week.

  • mikec59
    mikec59 Member Posts: 2
    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
    acedamama Member Posts: 12
    corleone said:

    I was diagnosed with

    I was diagnosed with Nasopharyngeal carcinoma, stage III (T2N2), undifferentiated type, on 14-Jun-2012. I had radiation 70 Gy: 35 sessions (7 weeks, finished on 05-Sep-2012) concurrent with Cisplatin days 1 and 22 (attempted on day 43, but the last dose was not administered due to toxicities (hearing loss ~50%)). Adjuvant (post radiation) chemotherapy: carboplatin (instead of cisplatin that was too toxic for me) on day 1 plus fluorouracil by continuous IV infusion on days 1-4 every 4wk for 3 cycles. Finished chemo on November 26th.

    During the treatment I had a huge appetite but not able to taste anything (starting with week 3 of radiation until 1 month post radiation), very frustrating. The worse symptom was nausea, but with proper medication (don’t forget to ask for EMEND) it was manageable. Pain was also manageable (remember I didn’t have any surgeries done). I used to dream a lot about food, during this time. 1 month after radiation the taste for salt started to come back gradually; 2 months post, taste for sweet; 3 months, for bitter. The saliva is only ~20% back, but I was able to eat liquid and semisolid food starting with week 3 post radiations. During the day, the lack of saliva is not bothersome (I sip water from time to time, especially when I have to speak). Now I eat almost any food, solid or not (with water or tea) and taste I would say %80 normal (except that the taste fades away after a few bytes). I no longer have a G tube (removed January 8th) but it was useful during the worst phase of the treatment (last 2 weeks during and 1 week post radiation).

    I lost 20 pounds during treatment, now I have 138 pounds. The weight does not seem to increase, regardless of how much I eat, but my wife is very happy with that.

    The energy level started to come back (again, key word – slowly) 1 month post last chemo treatment. Now it’s much better, I started working again recently.

    The side effects that are still troublesome (now 3 month post treatment) are: hearing loss (~50%, wife not happy, she says I don’t listen to her) and xerostomia (dry mouth). I can’t open my mouth as I would like (I have trouble eating large foods) but I can still stick 2 fingers in my mouth (should have been 3).

    In my case, Cisplatin was ototoxic (hearing loss) but I didn’t have any other long lasting side effects.

    I am anxiously waiting for the MRI follow-up in a week.

    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!

  • phrannie51
    phrannie51 Member Posts: 4,716
    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.

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    mikec59 said:

    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.

    Cisplatin - Tinnitus & Hearing Loss

    I think that both tinnitus and hearing loss are potential with Cisplatin... Many here have had some problems with both due to Cisplatin..., not so sure on many of those that it actually became better though.

    JG

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    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
    donfoo Member Posts: 1,771 Member
    fishmanpa said:

    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"

    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

     

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    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
    jcortney Member Posts: 503
    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"

     

     

    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

     

     

     

     

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    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"

     

  • NJShore
    NJShore Member Posts: 429 Member
    fishmanpa said:

    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"

    Cisplatin

    Hi, welcome to the group, sorry we had to meet this way.

    My husbands dx was stage 4 tonsil cancer with metasis to the neck, 3 node involvement. He had 6 weekly treatments of cisplatin and taxol. Once he got 10 seconds of ringing sound in his ear, but not on a chemo day. He said that happens once in a blue moon to him anyway. It does me too, so we didn't get over excited. He also had no numbing or tingling of the fingers or toes which they also looked for. The cisplatin didn't seem to bother him directly at all, although it's a great prep of cells for the radiation to it's job, so evidently you feel it, but where it does the most good, in the tissues that need to go!


    I wish you both luck, the dark tunnel does have a light at the end, it's just not a fast journey for several months, so pull up a chair, grab your coffee, we will be here to answer questions and lend an ear if you need it.

    Kari

  • alligatorpointer
    alligatorpointer Member Posts: 131
    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.