Cisplatin Fears

2

Comments

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member

    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.  

    Good Info!

    Good Info Gator...Thank you!

    I imagine that will be the reponse I get from my MO. It makes sense. From the research I've done on Cisplatin and the chem/radiation treatment, the chemo opens the cancer cell and freezes it in a vulnerable position prior to division, so when the rads hit it, the cell is destroyed. At least that's the translation I got from all the technical jargon. It would make sense that the chemo is a helper, so to speak, for the radiation, while at the same time it helps to immobilize rouge cancer cells that may have migrated elsewhere in the body. 

    I know I'm putting the cart before the horse (or hoarse) concerning my voice, but sometimes when you're heading downhill you lose control and stumble. 

    "T"

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

    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"

     

    Same Ole Saying...

    Everyone is different....

    While I also had Cisplatin, Taxotere, 5FU and Carboplatin, I have nor had, Neuropathy, Tinnitus (other than what I already had from Artillery and Gun Fire in general), and no apparent hearing loss...

    Although my wife may dispute the hearing loss statement, LOL...

    It's just a wait and see, communicate with the MD's as soon as (if) you have any reactions....

    JG

  • 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"

    Other know more

    I belive Cisplatin is the primary choice of chemo as a radio-synthesier for the radiation. If side effects of Cisplatin become excessive, i.e. too many decibels of hearing loss, then I think some get switched over to Carboplatin as it seems a bit less aggressive on the body. Some even start on Carboplatin rather than Cisplatin. 

    If you are schedule to get weekly chemo, then the dosage has to be fractionalized from some base amount such that you don't get too much which might not be necessary and also create excessive side effects, excesive immunem system breakdown, etc.

    I don't know what the MORO do if both platinum based chemo drugs are crossed off.

     

    Don 

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

    Other know more

    I belive Cisplatin is the primary choice of chemo as a radio-synthesier for the radiation. If side effects of Cisplatin become excessive, i.e. too many decibels of hearing loss, then I think some get switched over to Carboplatin as it seems a bit less aggressive on the body. Some even start on Carboplatin rather than Cisplatin. 

    If you are schedule to get weekly chemo, then the dosage has to be fractionalized from some base amount such that you don't get too much which might not be necessary and also create excessive side effects, excesive immunem system breakdown, etc.

    I don't know what the MORO do if both platinum based chemo drugs are crossed off.

     

    Don 

    Carboplatin

    Don, actually like you mention....

    My bigger doses of Cisplatin came with the nine week period of three cycles, along with Taxotere and 5FU.

    Not that they started and switched from Cisplatin to Carboplatin. But my seven week period of concurrent (after) the nine weeks was weekly Carboplatin and the 35 daily rads.

    Also, like you say, the Carboplatin enhances the effectiveness of the concurrent radiation.

    JG

  • hepkess
    hepkess Member Posts: 6
    Cisplatin

    I had stage four throat cancer with 2 tumors, one below my larynx and one towards the top on the opposite side. I had 30 radiation treatments and 2 rounds of Cisplatin.  My taste started to go after about 3 weeks, by the end it was completely gone. My throat had bad burns and I spent a lot of time eating pudding, the only flavor that seemed to break thru was chocolate. Most foods tasted like flavorless paste. It was coming back pretty good after about 3 months. Now, a year and a half later, most of my taste is back, some things just don't taste as well as I remember, but I can taste them. I coughed up tons of mucus for a month or two, and it leveld off to just settling in the area of my larynx at night. My ENT Dr. suggested Musinex and it works fairly well.

    The cancer messed up something and my ears started rining about 4 months before I was diagnosed. It was very loud. After treatment started, the tinitis got a bit quieter, but to this day I still have a high pitched whistle that can be ignored. The Cisplatin does mess with your hearing. I reached a point where the ringing was so loud that I couldn't hear much at all. Before, I watched TV at about a level 12 on my TV, after the cisplatin, I had to turn it up to 24. After awhile, I began to feel as if my head was under a blanked or a pilow. Now, I wear hearing aids, but sounds, especially my voice are distorted. There are times I have a very hard time woth the softer p, c, t sounds. I am grateful the deterioration stopped. Hearing loss is on the lable, you should re read the adverse reactions to meds.

    I am now nearly 2 years from the end of my treatment. I get another PET scan tomorrow and I am fairly conficent that it will be negative. Still, that little fear still sits threre, I am told afterwards, it never really goes away.

    I was treated at the West Los Angeles VA Hospital. I got excellent care, and because of a service connected disability, I didn'thave to pay, another thing for which I am grateful. I had swallow therapy and exercises to do at home that helped with my recovery. I got most of my salive back. Try to listen to your body and check for adverse reactions to the medication. Hair comes back, other parts get better. I am still alive and functioning well. Good luck. Try to take each day at a time an think about when things start to get normal again. Have faith in your doctors, treatment has come a long way in just the last 20 yerars and itis getting better all the time.

  • Greg53
    Greg53 Member Posts: 849
    hepkess said:

    Cisplatin

    I had stage four throat cancer with 2 tumors, one below my larynx and one towards the top on the opposite side. I had 30 radiation treatments and 2 rounds of Cisplatin.  My taste started to go after about 3 weeks, by the end it was completely gone. My throat had bad burns and I spent a lot of time eating pudding, the only flavor that seemed to break thru was chocolate. Most foods tasted like flavorless paste. It was coming back pretty good after about 3 months. Now, a year and a half later, most of my taste is back, some things just don't taste as well as I remember, but I can taste them. I coughed up tons of mucus for a month or two, and it leveld off to just settling in the area of my larynx at night. My ENT Dr. suggested Musinex and it works fairly well.

    The cancer messed up something and my ears started rining about 4 months before I was diagnosed. It was very loud. After treatment started, the tinitis got a bit quieter, but to this day I still have a high pitched whistle that can be ignored. The Cisplatin does mess with your hearing. I reached a point where the ringing was so loud that I couldn't hear much at all. Before, I watched TV at about a level 12 on my TV, after the cisplatin, I had to turn it up to 24. After awhile, I began to feel as if my head was under a blanked or a pilow. Now, I wear hearing aids, but sounds, especially my voice are distorted. There are times I have a very hard time woth the softer p, c, t sounds. I am grateful the deterioration stopped. Hearing loss is on the lable, you should re read the adverse reactions to meds.

    I am now nearly 2 years from the end of my treatment. I get another PET scan tomorrow and I am fairly conficent that it will be negative. Still, that little fear still sits threre, I am told afterwards, it never really goes away.

    I was treated at the West Los Angeles VA Hospital. I got excellent care, and because of a service connected disability, I didn'thave to pay, another thing for which I am grateful. I had swallow therapy and exercises to do at home that helped with my recovery. I got most of my salive back. Try to listen to your body and check for adverse reactions to the medication. Hair comes back, other parts get better. I am still alive and functioning well. Good luck. Try to take each day at a time an think about when things start to get normal again. Have faith in your doctors, treatment has come a long way in just the last 20 yerars and itis getting better all the time.

    Cisplatin/Substitutions/Tinnitus

    Ace,

     

    First off, there's a lot of good stories here.  So far (knock on wood) I'm one.  Stage IV, tonsil with bilateral node involvement.  Radical neck dissection, rads and chemo - yes the 3 super doses of Cipslatin.  I'm here 3 years later and doing dang good!  Lost lots of weight myself (over 30% of body weight) but have slowly gained it back.  Tell hubby to hang in there - he can do this!

     

    This is for "T"

    As for the Cisplatin, I did the 3 big doses, every 3 weeks concurrent with rads.  Though, I actually I did 2.  The third was eliminated due to hearing loss; - "T" don't worry  EVERYONE IS DIFFERENT.  My suggestion for T and everyone else if you are concerned about this - get a baseline hearing test BEFORE you start Cisplatin.  FYI - they substituted Erbitux (4 shots) for the last Cisplatin for me.  So I got the best of all of it - tired from Cisplatin and zits from Erbitux (even got long-term acne from the Erbitux as I still get the dang stuff weekly).  But, I'm here and enjoying myself every dern day!  And I was concerned that physically I wouldn't be able to do the outdoor activities that I love so much - yep, still can and still do.

     

    I also have the tinnitus. Mine is not so bad.  In fact I have several different sounds - one sounds like crickets chirping - so I just think I'm out camping. "T" - you have given so much in such a short time on the site and you certainly appear to be a positive dude.  Don't let this part of it get you down.  Chances are it won't affect you and even if it does, you'll acclimate as you have your whole life.  Of anyone I've met here - I am sure you will do well!

     

    My best to everyone!

    Greg

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 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"

    there are alternatives

    so you need to be clear that your professional interests will not tolerate hearing loss.  It isn't just a preference thing you are stating.  They should certainly make allowance for this as part of your treatment plan.  Carboplatin is a viable alternative to cisplatin, and is not as hard on hearing.  Erbitux doesn't affect hearing at all.  Just for a couple of examples....

     

    Pat

  • donfoo
    donfoo Member Posts: 1,771 Member

    there are alternatives

    so you need to be clear that your professional interests will not tolerate hearing loss.  It isn't just a preference thing you are stating.  They should certainly make allowance for this as part of your treatment plan.  Carboplatin is a viable alternative to cisplatin, and is not as hard on hearing.  Erbitux doesn't affect hearing at all.  Just for a couple of examples....

     

    Pat

    hearing and dead or alive and hard of hearing?

    Not sure you want to trade off platinum based chemo concurrent with rads. These two are proven to work best together. Cispaltin is number one, carboplatium number 2, and Erbitux and other non-platinum based alteratives are used when complications prevent the gold standard to be used.

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    donfoo said:

    hearing and dead or alive and hard of hearing?

    Not sure you want to trade off platinum based chemo concurrent with rads. These two are proven to work best together. Cispaltin is number one, carboplatium number 2, and Erbitux and other non-platinum based alteratives are used when complications prevent the gold standard to be used.

    well

    I respectfully disagree with the statements you just made.   This is not a proven situation, and though you are correct in saying "gold standard", how that gold standard was achieved is more historic than it is evidence-based.   Not worth an argument, but I still suggest there is quite a bit of wiggle room in these treatments, and that it may well be worth a prolonged conversation with the medical oncologist.

     

    best regards

     

    Pat

  • Jennfer39
    Jennfer39 Member Posts: 23 Member
    To each their own

    Ace, 

    As does everyone else, I welcome you to this forum.  May you find what you are seeking here, when you seek it, and may it ease your mind. 

    I say 'to each their own', because as everyone else has said, EVERYONE has a different reaction to the treatment.  I was diagnosed with Stage 4 tonsillar cancer, and node involvement a year and five months ago.  I too was treated with high dose Cisplatin on day one, and 40 rounds of radiation, all concurrent.  The chemo was every three weeks, and as it built up in my system, the worse the symptoms got for me.  Treatment one took 5 days.  Treatment two, 3 days.  Treatment three?  Side effects took 18 hours....each time it took less time for the side effects to hit and they hit HARDER as we went.  Tinitus, tingling of the feet, vomitting, etc.... the chemo side effects subsided each time, unlike the radiation..

    I called myself ROBOMOM.....I had the PEG tube, the port.  I was on every nausea med known to man.  The chemo was rough on my system, but the radiation was (I believe) much tougher on me overall.  Nothing could touch the nausea, and the tube didn't work for me.  I vomitted instantly when I tried to take anything through it.  The only thing I did with the tube was clean it daily with a rinse of water. IV  Hydration was my saving grace...no question.  The treatment for me was grueling, but as others said, I got through it....we all have.

    The payoff for me was the healing process.  I bounced back very quickly.  My port was infected three days after my last chemo, and I spent a week after, in the hospital, with a blood infection that almost killed me.  HOW INSULTING!!!  I get through this hell, and my PORT is going to kill me?  It was surgically removed, and I began to recover.  My PEG was soon removed because I forced myself to eat....I too had forced myself to swallow regularly, because this treatment can cause you to lose your ability to swallow.. That was a goal I had from the start.  I hated that tube...and all it represented...but knew it might save my life it things got bad, so I tolerated it during treatment.  The day they yanked that PEG out of me three weeks after I left the hospital, I felt like a lawnmower......and the doc had started my healing engine running, and I never looked back.

    My ENT left for Cleveland, moving closer to his wife and kids....so I was referred to, and went to my new ENT a month after my treatment ended.  He scheduled me last of the day so he could spend extra time with me.  He walked into my exam room, looked at me, his chart, and left the room.  He was used to those going through treatment looking like a MACK truck ran them over.  I looked healthy and overjoyed.  He came back in, spent the time gaulking and studdering... my RAD ONC told me that when I left, my ENT had called him to make sure I had received as much treatment as my charts said.  To this day we laugh about it.  Had he seen what my radiation onclogist saw, he wouldn't have doubted what I had been through.  My last day of treatment, I finally bawled...I cried for an hour straight.  The treatment broke me...on the very last day.....but I am stronger, better, wiser today following treatment. 

    Here is my belief, and the moral of my story....CISPLATIN is vicious....or can be....but it also made my body build itself back up healthier, stronger, and better.  It was a "liquid roundup weed remover", that got rid of all of the gunk, and allowed me to grow back fresh and new".  Everyone is different.  But the treatment is what is necessary to look back as many of us can....and remember the journey, and look at the battle scars and appreciate the chances we all get.

    Best of luck to you and your hubby.  You are in good company, and if we can help you at all...If I can assist you in anyway..... I want to pay forward, all the gifts this journey has brought me.

    Jen

     

     

     

  • donfoo
    donfoo Member Posts: 1,771 Member

    well

    I respectfully disagree with the statements you just made.   This is not a proven situation, and though you are correct in saying "gold standard", how that gold standard was achieved is more historic than it is evidence-based.   Not worth an argument, but I still suggest there is quite a bit of wiggle room in these treatments, and that it may well be worth a prolonged conversation with the medical oncologist.

     

    best regards

     

    Pat

    No need to argue - just read NCC and references

    NCCN Guidelines

    NCCN Guidelines Version 1.2012 Head and Neck Cancers

    Principles of Systemic Therapy

    CHEM-A 1 of 3

     

    The only category 1 therapies are 

    Cisplatin (preferred)

    Cetuximab

    Carboplatin/infusional 5-FU

    All other options are listed as Category 2A

     

    Read yourself here: http://beatdown.cognacom.com/sites/default/files/NCCN.pdf

     

  • acedamama
    acedamama Member Posts: 12
    Citsplatin replaced with Carboplatin

    My husband had ringing or chirping in his ears after his first Citsplatin treatment (1 of 3 every 3 weeks) so his onc changed his treatment to Carboplatin ( every week). Any advice on how to help with the hearing loss and how Carboplatin will be at first and over time. I know everyone is different, but I would take soem comfort to know what "might" happen. THANKS!

  • acedamama
    acedamama Member Posts: 12
    Skiffin16 said:

    Carboplatin

    Don, actually like you mention....

    My bigger doses of Cisplatin came with the nine week period of three cycles, along with Taxotere and 5FU.

    Not that they started and switched from Cisplatin to Carboplatin. But my seven week period of concurrent (after) the nine weeks was weekly Carboplatin and the 35 daily rads.

    Also, like you say, the Carboplatin enhances the effectiveness of the concurrent radiation.

    JG

    Carboplatin and rads

    Did you find a big difference in your reaction to the Cabroplatin verses the Cisplatin? How was the weekly side effects versus the every three weeks. My husband's DR changed his treatment to Carbo after he complained of hearing troubles. THANKS

     

  • phrannie51
    phrannie51 Member Posts: 4,716
    acedamama said:

    Citsplatin replaced with Carboplatin

    My husband had ringing or chirping in his ears after his first Citsplatin treatment (1 of 3 every 3 weeks) so his onc changed his treatment to Carboplatin ( every week). Any advice on how to help with the hearing loss and how Carboplatin will be at first and over time. I know everyone is different, but I would take soem comfort to know what "might" happen. THANKS!

    Skiffen (John) will be here to

    give you some Carboplatin tips and hints....I know he had it.  There are others, too, but not on the top of my head.  I hear tho, that it's a little easier on the body.  My ears are still ringing, I'm sure glad I was spared the "chirps"....that would make me crazy. 

    Glad to hear tho, that the Dr.'s listened, and changed his chemo....

    p

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    acedamama said:

    Citsplatin replaced with Carboplatin

    My husband had ringing or chirping in his ears after his first Citsplatin treatment (1 of 3 every 3 weeks) so his onc changed his treatment to Carboplatin ( every week). Any advice on how to help with the hearing loss and how Carboplatin will be at first and over time. I know everyone is different, but I would take soem comfort to know what "might" happen. THANKS!

    Hearing Loss with Cisplatin

    Hi Acedamama,

    I'm in this race concerning Cisplatin vs Carboplatin and so far, with one infusion under my belt, I'm Ok with Cisplatin. Being a musician, hearing loss or severe tinnitis is not desirable. It depends on how you're getting the infusions as well as the dosages that influenece the level of side effects. I'm getting a "medium" dose over a 6 weekly infusions as opposed to a larger dose 1x3 which, according to my MO, is better for my rad/chemo treatment and minimizes the hearing loss side effect. I had a baseline hearing test and will have another in three weeks. 

    While both drugs work, studies show Cisplatin to be more effective in combination with rads. From what I was told by both my MO and audiologist, hearing loss/tinnitis is permanent. 

    "T"

  • corleone
    corleone Member Posts: 312 Member
    acedamama said:

    Citsplatin replaced with Carboplatin

    My husband had ringing or chirping in his ears after his first Citsplatin treatment (1 of 3 every 3 weeks) so his onc changed his treatment to Carboplatin ( every week). Any advice on how to help with the hearing loss and how Carboplatin will be at first and over time. I know everyone is different, but I would take soem comfort to know what "might" happen. THANKS!

    To answer specifically to

    To answer specifically to this question. I had 2 sessions of cisplatin concurrent with radiation. During the post radiation chemo, I had cisplatin replaced with carboplatin due to hearing loss (~50%). I have to tell you 2 things. Firstly that cisplatin is “considered” more effective (preferred, or 1st choice). Personally I noticed a 50% shrinkage of a neck cervical lymph node (that was easy to palpate) after only 1 day of Cisplatin treatment. After the 2nd session of cisplatin, I couldn’t palpate any lymph node. Secondly, while carboplatin is considered less effective, it is also way less toxic. I didn’t notice any hearing loss during carboplatin (+5FU) treatment; the hydration doesn’t have to be so draconic, it is less toxic for kidneys; nausea was much less than cisplatin. I can tell you that I didn’t feel any side effects when I had the carboplatin infusions (in contrast with cisplatin).

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    donfoo said:

    No need to argue - just read NCC and references

    NCCN Guidelines

    NCCN Guidelines Version 1.2012 Head and Neck Cancers

    Principles of Systemic Therapy

    CHEM-A 1 of 3

     

    The only category 1 therapies are 

    Cisplatin (preferred)

    Cetuximab

    Carboplatin/infusional 5-FU

    All other options are listed as Category 2A

     

    Read yourself here: http://beatdown.cognacom.com/sites/default/files/NCCN.pdf

     

    what does mo stand for?
    deb

    what does mo stand for?

    deb

  • acedamama
    acedamama Member Posts: 12
    Thanks for the info about Carboplatin

    Thank you for the info. May God continue to bless you with great results. I haven't noticed any changes in the nodes or tumor (it is visible on his neck), but we are only 3 weeks into treatment. After the first week with cisplatin (1 every 3weeks) he noticed the "chirping". His ONC changed to Carboplatin weekly dosage for the next 6 weeks. Praying it is going to be the best combination for him. God Bless!

  • tackstrip
    tackstrip Member Posts: 14
    acedamama said:

    Thanks for the info about Carboplatin

    Thank you for the info. May God continue to bless you with great results. I haven't noticed any changes in the nodes or tumor (it is visible on his neck), but we are only 3 weeks into treatment. After the first week with cisplatin (1 every 3weeks) he noticed the "chirping". His ONC changed to Carboplatin weekly dosage for the next 6 weeks. Praying it is going to be the best combination for him. God Bless!

    Carbaplatin

    I start my chemo next Tuesday. I am getting the Carbaplatin, so side effects might be less. Though I will be taking the  erbitux also and staring 4 day treatments of 5-fu. I had radiation in January so this is the next step, I believe palliative care is best they can do for me right now. So I don't want to feel any worse if I don't have to.

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

    Carboplatin and rads

    Did you find a big difference in your reaction to the Cabroplatin verses the Cisplatin? How was the weekly side effects versus the every three weeks. My husband's DR changed his treatment to Carbo after he complained of hearing troubles. THANKS

     

    Milder..

    Actually with the Carboplatin, I didn't really have anything going on... They did give me Phenergan, and Zofran for nausea, but honestly I rarely had any at all.... Main thing like all of the rest of treatment..., plenty of fluids and rest..., take in the calories any way that you can.

    Best,

    John