Hi Everyone,
My father has recently been diagnosed with squamous cell carcinoma of the tonsil, tongue, and two lymph nodes, stage 4a. We are working with a cancer center and will get started soon with agressive radiation/chemo after his gums heal from removing many teeth.
We met with the oncologist this week and they want to use Cisplatin. However, we (we means Dad, Mom and I) have concerns as Dad is a classical musician and he says hearing is a very high priority. The Oncologist didn't give us any other options, Mom and Dad are on their way to CC for PEG tube discussion today and will try to see the doc again to ask about other options. I have noticed Carboplatin on these boards.
Are we being silly?

Sorry to read about your dad. It's great that he has you and his wife in his corner.

I think your question is a good one.

We thought we were making an educated decision at the time we were in discussions about my husband's chemo, but in retrospect if I knew then what I know now, I would have pushed for a different option.

I thought that in this thread (copy link below) of conversation, there is some good information about Cisplatin and Carboplatin.

http://www.oralcancerfoundation.org/cgi-bin/ultimatebb.cgi?/ubb/get_topic/f/6/t/000699.html

Good luck with your decision.

Mariam,
Hi. I am so sorry to hear about your father. His diagnosis sounds similar to my mom's. My mother was given Carboplatin rather than Cisplatin. In all honesty, she reacted as well as we could have wished to the Carboplatin - no hair loss, minimal vomiting. The radiation was a bit harder on her, but got better after she was taken off of the Ethyol injections. The PEG tube literally kept my mother alive. It is well worth it. The same goes for her trache. All I can say is that eventhough we went to the cancer center we had originally been referred to, we also went for consultations, one of which was at Sloan Kettering, and another at NYU. I suggest that you get as many opinions as you feel comfortable. It was amazingly reassuring for us to hear that she was on the right track, and the doctor at Sloan was also the doctor that basically insisted that my mom have a trache put in as soon as possible when treatments started, since, as he put it, you don't want to have to do that in an emergency situation. We have done more with caring for a trache and feeding tube than I ever expected I would have the mental strenght to do, not to mention the stomach to do, so if there is anything you need feel free to reach out to me. Finally, do whatever research you can. It is only through asking as many questions as you can that you can ask the right questions and get the correct answers. There was recently a long string here regarding the use of carboplatin vs. cisplatin and it sounds like that would be a good place for you to start. Best of luck to you and your family, and keep strong. Everyone on these boards is absolutely amazing and will become the best source of knowledge and support you could ever hope for.

Amy

Hi Mariam,
I'm sorry to hear about your father. My dad had a similar diagnosis. (We're also in Illinois. Where are you being treated?) Can you give any more information about his age, health, etc?
We got consultations at Rush, Northwestern and U of C. We decided to with U of C. My dad's treatment protocol called for an "induction chemo" phase which was 8 weeks long and he received carboplatin, taxol and Erbitux. Phase 2, which we're currently in, is 7 weeks and consists of cisplatin (twice), Erbitux (weekly), and daily radiation. He's had one of his two cisplatin treatments and seems to be handling it well. He is a little more nauseous than with the carboplatin, but that may just be due to the cumulative effect of all the drugs. He says he's had a little tinnitus (high pitching ringing), but that it's barely noticable. (Or at least not much different than pre-cancer days.) I've read about several people on here who started with cisplatin (since it's basically the "gold standard"), but were switched to carboplatin if the side effects got too bad. You should ask your doctor if that would be a possibility.
Please feel free to contact me if you think I can help you with anything.

Stephanie

Thank you for your responses. Everything about this has seemed like one rapid decision after another...And more than a few mixed messages. (For instance, Oncologist says "You are a good candidate for cure" then we are whisked to social worker who tells us about hospice.?!")

Stephanie,
We are in the Peoria Area but he will be treated in Iowa City. There is a partnership there between University of Iowa Cancer Center and the Veterans Hospital. (Dad is a vet so they put him up and pay for everything. Radiation etc will be at the University Hospital)
Dad is 72 years old with no health problems (other than Cancer) he even has all of his teeth and has only had one cavity in his life.(They will remove 11 teeth on Monday, all in the back.)
He smoked in the 1950's in the military and a bit socially after but not at all in the last 35 years. He has 1 beer a week. He's Mr Moderation. He still works part time as a music instructor, plays in the symphony etc. He is in no pain or fatigue, just noticed a lump about a month ago on the neck.
They said that the only thing going against him with Cisplatin is his age. However Dad is beginning to feel that the risk of hearing loss, ringing or changes are bordering unacceptable.(especially after reading on this site that the hearing problems can start after the 1st treatment..They want to do chemo 3 times-once every three weeks, and radiation 5 days a week for 7 weeks) Not to mention the kidney stuff.
Hopefully I can get Mom involved with this site as well. Dad is not internet savvy but asks me to research etc.

Mariam,

I'm curious, why are they removing 11 of your dad's teeth?

My husband had Base of Tongue cancer and started out with Cisplatin and Radiation similar to what they are proposing for you Dad. He had to discontinue the Cisplatin after the first dose due to hearing/tinitus issues.

Although, at no time was teeth removal ever brought up. Are you dad's teeth in bad shape?

Hi Mariam

From one musician to another, ask the question.

I had Cisplatin as one of the drugs in my 3 rounds of induction chemo. I do have a slight constant ring in my ears, and I have noticed some very high frequency loss of hearing. I no longer have much of anything above about 10k or so. Before this I had hearing out to about 14k

Yes I am one of the guys that used to complain about old televisions and the old ultra-sonic alarm sensors.

Kevin

No, They say they don't want the risk of the teeth becoming bad after the salivary gland stops working. That once the mouth goes dry they can rot fast and an infection can go down to the bone, also that it is hard to care for teeth while going through the treatments if you get thrush etc. He still has his wisdom teeth and they want to get those out. The dentist didn't say the teeth were bad,they just want to remove them.
We were relieved because they had mentioned removal of all teeth, but now he will have all but 11.

They don't usually remove healthy teeth anymore. The fact that they originally wanted to remove all his teeth sounds like you have run into one of those docs operating under the old protocol. Wisdom teeth going is one thing, but he doesn't have 11 of them. Yes, you need to take meticulous care of your teeth both during and after radiation. If they are as healthy as you indicate, I'd get a second opinion.

Take care,
Eileen

Eileen and Margaret,
I will ask about the teeth tonight, I may have missed something about the condition of them.
Thank you for your responses.

my two cents: The RO sent Buzz to dentist this week, just to check his teeth before beginning radiation/chemo...she thought that there was ONE that might need attention...Buzz' dentist said "no reason to take it out..it looks fine"..Buzz is almost 77 and still has all of his teeth except for a couple he lost in one of his wars...Korean, maybe? and wears a partial.
I have done HOURS of research re: teeth extraction before radiation, and MY PERSONAL conclusion is that pulling the teeth before radiation just isn't a requirement anymore...Feel free to disagree with me...

my two cents: The RO sent Buzz to dentist this week, just to check his teeth before beginning radiation/chemo...she thought that there was ONE that might need attention...Buzz' dentist said "no reason to take it out..it looks fine"..Buzz is almost 77 and still has all of his teeth except for a couple he lost in one of his wars...Korean, maybe? and wears a partial.
I have done HOURS of research re: teeth extraction before radiation, and MY PERSONAL conclusion is that pulling the teeth before radiation just isn't a requirement anymore...Feel free to disagree with me...

Hi Mariam,

Sorry to hear what you, your dad and your family are going through. You've gotten some very good advice above regarding the removal of 11 of your dad's teeth. I would like to back up these suggestions as a dentist.

The fact that your dad has all his teeth at 71 is great and if he doesn't have periodontal (gum) disease, then there is no reason that he should have any teeth out, except for maybe the wisdom teeth. With all that he will have to deal with, there is no need to add the additional problem of replacing teeth later.

It's good that you will be questioning this decision and I hope that the treatment plan is changed if there is nothing wrong with his teeth.

Jerry

My husband had one tooth pulled before radiation treatment. He was in his seventies and had all of his teeth. Months after radiation his teeth started to break apart and he needed to have all his teeth pulled but before they could do that he had to have 30 hyperbaric treatments, These treatments were necessary so that he wouldn't get a bone infection. He had floride trays made to help prevent the teeth from damage but he was just too sick and weak during his treatments to worry about his teeth. Eileen

Thank you for your responses, the original question I have is about choosing carboplatin rather than cisplatin to save Dad's hearing. They just got quiet about the dentistry stuff (overload?). I have a feeling this is how it will be: Tommorrow- I want a strategy meeting, they want a barbecue and have invited guests..(to my house!) I will make time with them to read all of your responses.
Thanks,
Mariam

Dear Mariam, if you haven't had time to read the discussion that Margaret suggested in her post above, try to do that. There is good information there to talk to the Docs about [carbo vs. cisplatin] Amy in the ozarks]

Mariam,
I don't want the oveload to become too unmanageable but I need to add my 2 cents worth.
1) I agree with Jerry, the cancer, radiation and chemo are not a good reason to remove teeth that otherwise would not need to be removed.
2) what instrument does he play?
3) I do assess ments pre treatment for the local oncologists in my area and try in all patients to say any serviceable teeth. If you read about the eating difficulties many of the OCF members are having teeth become the golden fleece.
4) Many time extracting teeth delay proposed chemo and radiation therapy due to the fact that they take longer to heal when the immune system is already challenged. The risk of infection and other problems increases drastically if extraction sockets are not completely healed prior to commencing chemo and radiation.
5) At 71 even if your father was not about to go throught the treatment he would find the task of learning to eat with prosthtic teeth a challenge and with the treatment even more difficult. One of the issues later on is nutrition and we need to be able to chew food to start the digestive process.

Just a few thoughts.
E-mail me any time.

My thoughts and prayers are with you and your father.

Mike

Sorry but they don't want to deal with the teeth info. They come out tommorrow.
Dr. Mike,He plays violin and clarinet.
I hope this isn't a bad way to start on this online community but my parents aren't kids or senile so I can't do very much other than present info and support them. We go tommorrow and then he heals prior to treatment. PEG tube on the 5th of Sept. They intend to have further discussion about cisplatin with doc. (yes I read the discussion which is what lead me to ask more..Really feel like I can't get my fill of info since this shock of the last few weeks)
Thank you all very much. I'll move to the appropriate message board now.

Miriam...GOOD LUCK to you and your parents..Stay with us and keep us posted as to your father's progress...You'll be in our prayers!

Lois & Buzz in NC

Hi Miriam;

Welcome to this forum. If you check my signature below, you will note the similarities to your father situation and I can share much information with you.

I too was a musician, but my time on the keyboard and skins was cut short after only 10 years - by a complete lack of talent. By comparison, tinnitus was a happy problem in my case!

I haven't read all the replies to date to your post, so I hope any comments do not conflict, confuse or become redundant.

Some points follow, and please feel free to ask me any specific question that comes to mind either by a post on this forum or direct by email to: [email protected] , your choice.

1. Dental issue: Sounds like they are being removed, but I wasn't about to lose all my natural teeth without a fight. I didn't do as much as I could have to protect them during treatment, but they all got through despite soft tissue and bone damage. Six months ago, rampant deterioration began, and I was not able to clean them very well due to trismus (lack of jaw motion) and xerostomia (lack of saliva flow) due to radiation. My regular dentist has researched alternative restoration procedures and newly available materials that were developed for irradiated patients and related problems. What was a pretty dim forecast a few months ago has turned around to the point where the decline has been stopped and they should last another 10-15 years when geriatric issues come to the forefront. They can be saved.

2. Feeding Tube. I fought having the tube installed until the 6th week of radiation, and felt I could make it the last week, so why do it?

I was misinformed. I understood that the pain and difficulty swallowing associated with the radiation treatment would stop when the actual treatment stopped. It was never emphasized to me that the radiation effects continue to build and intensify for anywhere from a couple weeks to a couple months following completion of the treatments themselves. Had I known that, I would have had a much easier time with it. It wasn't until the eve of my third and final chemotherapy session, having lost about 30 pounds in a little over a week, that they gave me a choice: either I regained something like 20 of pounds I had lost in the next 2 days and 1 night, or they would cancel my 3rd chemo session. They knew that I had set only 2 goals at the outset of treatment, and they were #1) not to have a g-tube installed (I was a wimp about it); and #2) to survive all 3 chemo sessions (I had heard that many can't handle the last one due to physical difficulty & nausea.) I set no goal with respect to surviving beyond the belief that life is a 50-50 proposition at the best of times - either you live or you do not live, its that simple. (I learned later I had about a 10% chance of being alive in 3 years. I'm now in year 2 of remission. Yippee!)

The other important thing to be aware of is becoming "feeding-tube dependent." I didn't think about it when I first heard reference to the term, but I still take 100% of my nutrition through the tube. Most people return to normal feeding habits a lot sooner than I, but be sure to look into how this comes about or may apply to your Father.

In my case, I can swallow liquids without too much problem and use ice-cream as a training aide, but that is it until I am able to open my mouth wide enough to insert solid or semi-solid foods AND be able to clean my teeth properly of all the food related bacteria that accelerate tooth decay in the absense of saliva.

There are many more things to consider than what I am touching on now.

3. Chemo with Cisplatinin. The single most scary piece of research information I read about cancer overall was what I learned about Cisplatinin. That said, it is one of the most successful treatments ever for this type of cancer, has been around for something like 20 odd years, and there is little or no loss of hair. That wasn't an issue for me, and true to form, I lost not a single locket, but loss of hair is a usual side-effect of most chemo drugs, generally speaking. Speaking of side-effects, Cisplatinin is noted for acute side-effects, particularly nausea which can become totally debilitating. I was very apprehensive about nausea and vomiting and the combined effect on nutrition (hence concern about feeding tube). In my case, I did not experuience so much as a queezy feeling at any time during any of my 3 sessions, and I should have mentioned earlier that what I received were "high dose" treatments according to my chart & written reports. I am not certain how I got away unscathed, but I was definately prepared for the worst, both in mind and in material (I caution myself....)

The important thing is not to worry about the severity of the side-effects, because the standard anti-nausea drugs that I was given were excellent and 100% effective. I believe that one's mental attitude and preparation accounts for much of the results we achieve, positive as well as negative. We become what we think about most of the time.

4. Are you and your Father being silly? There are no silly questions when it comes to cancer. Period. There are plenty of tough decisions, scary moments, the occasional inappropriate response, a few bad radiation days (like the software glitches), one or two painful biopsies, and an abundance of stress for everyone.

Offsetting all of that is the most incredible group of caring, sensitive, knowledgeable, skillfull and professional human beings will ever be assembled into a team format who will focus their every resource and energy on your Father's fight for his life against this most despictable disease.

I don't know what other people do, but I was so impressed with each and every individual I came into contact with that I decided to match their effort and reflect back a positive and powerful attitude. Once a treatment plan had been determined for me, I placed 100% of my faith in their capable hands, and said "Bring it on baby!"

The Fraser Valley Cancer Centre in a suburb of Vancouver, Canada where I received treatment is an architect designed, enhanced open concept facility with plenty of cedar, glass, skylights, plants, and artwork tastefully arranged. The air is replaced every few minutes, and I found it a most pleasant environment just to stand there and take ot all in. Aside from the 15 or 20 minutes spent attached to the equipment every visit for 7 weeks, I looked forward to spending time there. My radiation technicians were some of the most fun and dedicated people I have ever met in my life, and that attitude was reflected by the greeters, the office workers, maintenance personell, cafeteria staff - you name it! Cancer changes your life forever, and every experience is unique, but like most others things in life, its what you make of it that matters.

5. Finally, surgical procedures. I went under the knife for major surgery and had a radical neck dissection where something like 27 lymph nodes were removed from my neck and upper chest area along with a bunch of soft tissue, veins, nerves, muscle etc. The surgeon had told me that I would experience some post operative immobility around my shoulder and that it was a relatively routine procedure. He did a fabulous job, and there were no complications and they removed the 67 metal staples within 10 days. Nothing other than the staples were used to close the wound, and it air dried with no other bandages. Incredible. Mind you, I still haven't been able to find the other half of my neck, and I regret cutting my shoulder length hair off as it would have hidden what's missing. But how can I be critical of one of the men who saved my life? I don't; I just joke about it. I'm just happy to be here, 'cause every day on this side of the ground is a bonus to a member of the 10% club.

I've rambled on a little long here, and hope you don't mind. There's already an overwhelming amount of information for you and your Father to process, but just realize that it comes with the territory. Don't hold back any questions or concerns - everybody you'll meet on this website has travelled the same path one way or another, and we all relate to your situation. Keep your guard up cause cancer cheats and doesn't play fair or by any rules, but take comfort that you're not alone in the fight and there's every possibility for a 100% cure, but no guarantees, so don't freak out when you are confronted with someone who is ignorant about cancer and knows nothing about today's level of success.

Be sure to post your progress and share your experiences.

Here's wishing you, your Father, and all your loved ones long and healthy lifes.

Best regards,
JT2

PS: Remind your Father that only 6 inches separates him and anything he wants; the 6 inches between his ears!

Completely thrown off our game. We took him for what was to be outpatient 2 hour oral surgery and they accidentally cut a blood vessel and nerve. He went up to real surgery and the whole thing took 7 hours. They kept him over night. He's home now.
We haven't even started fighting cancer. I have lost so much confidence with this place. His lip will be permanently numb. All this discussion about whether or not he could keep teeth and I never thought of oral surgery dangers.
Hospital gave Mom and I a motel room, we hadn't brought a thing with us. She said we are learning a lesson about preparedness. Dad's attitude as always is great and forgiving...(I did not get these traits)

Hi Mariam,
Hopeing for the best for all of you.You may want to think about keeping a log time,places,who was there, and what happened it just may come in handy.
paul

Mariam,
You are being the loving, caring, strong daughter any father would relish. Sorry to hear about his misfortune in surgery and glad to hear he is recovering. Keep the faith!!
I understand that your father is driving the bus here but when you make enquiries even if you can't change his decisions you are doing the right thing for you. We will always respect the patients right to choose. As I have seen here we will all share our experiences and expertise even if they don't always agree.
The beauty of this and this forum is that you have love, support, strength, opinion and expert advice all in an easy to comprehend leisurly environment.
Don't give up and satisfy your need for more knowledge. You are helping your father even if his mind is made up because knowledge is power and it will help you cope with the fight he is going through.
Keep strong and continue to be there for your father. Tell him you love him everyday.

My thoughts and prayers are with you and your father.

Mike

Dear Mariam, Being "thrown off the game plan" at one point or another is par for the course, sorry to say. Are you familiar with the "pain level scale of 1-10 " that patients are asked to pick? Caregivers have a "Frustration and Fear level" scale that we deal with daily. Unfortunately, no one [except OCF folks] ask us what level we are on. We know what you are dealing with, hang in here. Amy in Oz

Hi Mariam;

Me again, and wouldn't you know it, you get into more trouble when you weren't even looking. Sorry to hear about the unexpected goof-up. Its par for the course, but who needs more trouble with medical issues? certainly not you folks.

Its good you are not letting it get to you though. If you can overpower these setbacks with a powerful attitude, you'll develope a habit that will help you down the road should any tougher situations arise. The mind is one of your most powerful, predictable and reliable assets.

We are all pullin' for ya', and pass on our sincere best wishes to your Father for us, okay!

Don't forget to take some time for yourself too, as your life and its day to day issues still have to be attended to as well. Its easy to be distracted, and you don't need a palace revolt at home on your hands.....

All the best,
JT2