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Cisplatin Fears

acedamama's picture
acedamama
Posts: 12
Joined: Jan 2013

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

denistd's picture
denistd
Posts: 534
Joined: Apr 2009

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

acedamama's picture
acedamama
Posts: 12
Joined: Jan 2013

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!

rachel12yrsuv's picture
rachel12yrsuv
Posts: 435
Joined: Feb 2013

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

acedamama's picture
acedamama
Posts: 12
Joined: Jan 2013

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!

Skiffin16's picture
Skiffin16
Posts: 8218
Joined: Sep 2009

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's picture
acedamama
Posts: 12
Joined: Jan 2013

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's picture
phrannie51
Posts: 4085
Joined: Mar 2012

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's picture
Pam M
Posts: 2193
Joined: Nov 2009

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's picture
corleone
Posts: 194
Joined: Jul 2012

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.

acedamama's picture
acedamama
Posts: 12
Joined: Jan 2013

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's picture
phrannie51
Posts: 4085
Joined: Mar 2012

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.

mikec59
Posts: 2
Joined: Jan 2011

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.

Skiffin16's picture
Skiffin16
Posts: 8218
Joined: Sep 2009

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's picture
fishmanpa
Posts: 1164
Joined: Jan 2013

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's picture
donfoo
Posts: 1440
Joined: Dec 2012

>> 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's picture
fishmanpa
Posts: 1164
Joined: Jan 2013

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's picture
jcortney
Posts: 444
Joined: Sep 2012

"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's picture
fishmanpa
Posts: 1164
Joined: Jan 2013

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"

 

Skiffin16's picture
Skiffin16
Posts: 8218
Joined: Sep 2009

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

alligatorpointer's picture
alligatorpointer
Posts: 131
Joined: Jul 2012

"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.  

fishmanpa's picture
fishmanpa
Posts: 1164
Joined: Jan 2013

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"

NJShore's picture
NJShore
Posts: 412
Joined: Nov 2012

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

donfoo's picture
donfoo
Posts: 1440
Joined: Dec 2012

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's picture
Skiffin16
Posts: 8218
Joined: Sep 2009

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

acedamama's picture
acedamama
Posts: 12
Joined: Jan 2013

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

 

Skiffin16's picture
Skiffin16
Posts: 8218
Joined: Sep 2009

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

longtermsurvivor's picture
longtermsurvivor
Posts: 1845
Joined: Mar 2010

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's picture
donfoo
Posts: 1440
Joined: Dec 2012

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's picture
longtermsurvivor
Posts: 1845
Joined: Mar 2010

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

donfoo's picture
donfoo
Posts: 1440
Joined: Dec 2012

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

 

debbiejeanne's picture
debbiejeanne
Posts: 3022
Joined: Jan 2010

what does mo stand for?

deb

hepkess
Posts: 1
Joined: Jan 2013

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's picture
Greg53
Posts: 848
Joined: Apr 2010

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

Jennfer39's picture
Jennfer39
Posts: 22
Joined: Nov 2011

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

 

 

 

acedamama's picture
acedamama
Posts: 12
Joined: Jan 2013

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!

phrannie51's picture
phrannie51
Posts: 4085
Joined: Mar 2012

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's picture
fishmanpa
Posts: 1164
Joined: Jan 2013

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's picture
corleone
Posts: 194
Joined: Jul 2012

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).

acedamama's picture
acedamama
Posts: 12
Joined: Jan 2013

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
Posts: 14
Joined: Oct 2012

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's picture
Skiffin16
Posts: 8218
Joined: Sep 2009

In addition to the tonsils, I also had a visible lump going into treatment... After seven weeks or so it was barely even noticed by touch, couldn't see it at all. After the nine weeks (three week cycles of Cisplatin, Taxotere and weekly 5FU (all before weekly Carboplatin), the tumor dissolved away...

They even had me do a CT, no signs of it since, and it did show up on the original PET Scans...

If I remember correctly, there were a few others here with similar results...

So hang in there, you never know what good things might turn out...

Best,

John

Jennfer39's picture
Jennfer39
Posts: 22
Joined: Nov 2011

I recall feeling the dent on the lump about week two of radiation.  Mine too simply melted away and had been VERY visible and palpable going into treatment.  I knew, and could physically feel the tumor shrinking in my lymph nodes.  Many don't have that  "in the moment" confirmation that the treatment is working. 

Without being redundant, I would hope you have had no recurrences? 

I certainly hope that to be the case! 

Jen

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