Consultation on Friday... questions

Chicklette

Hi Everyone,

My husband has his first consultation with the medical and radiation oncologists on Friday.  What are some questions we should be asking?  We have a notebook and have written a few things down.  He wants to avoid cisplatin if possible due to the risk of hearing loss and neuropathy.  As a musician the hearing loss would be detrimental.  I know Erbitux is usually an option so we will ask.  I was also wondering about Amifostine.  I wonder if they still use it as I have not heard much about it recently.  Is it worth the side effects?  We also know he will likely have a feeding tube, but where he is overweight we wonder if they will suggest it or if we will need to ask.  Does anyone have any advice for the initial consultation?

 

Thanks in advance.

~Chicklette ~

Chicklette

Proton Therapy

we are also going to ask about proton therapy since the hospital has a proton center.  Anyone have experience with proton therapy?

rsp

Proton Therapy

My husband, too, was leaning towards proton therapy... until another dr. told us something interesting.  When we mentioned we were going to see about getting proton therapy, he said it is SO precise, that if there are any cancer cells floating just beyone where the beam is shining, it may miss them... Well, that made up our mind to NOT go with proton therapy.  This was told to us by an oncologist at a very prestegious cancer center on the east coast.

rsp

Feeding tube

My husband did not get a feeding tube.  He was totally against it.  In hind sight, we wish he would have gotten one.  He was also overweight when he started (255), so he didn't think he needed one.  He lost 80 pounds and all of his muscle... He went from wearing size 40 jeans to 34's, and 2XLT shirts to medium or large.

Still struggling to eat anything but liquids three months post radiation.  I would definetely concider the feeding tube.  If he doesn't need it, he doesn't have to use it.  If needed... it will be there.

MMDowns

I would ask about Carboplatin

I would ask about Carboplatin as well.  I have been told that it isn't as harsh as Cisplatin.  I wish that we had questioned more when we were told that he would receive Cisplatin.  It's wicked.  My husband had a bit of a belly when we started, but he lost 12lbs in a week.  A week.  He's managed to lose and gain the same 3lbs over the past few weeks but he is also living off of Ensure.  I would really think about the tube.  Your husband doesn't have to use it and really once healed it's really not that big of a nuisance.  We ordered a PEG holder from Amazon and that helps a lot.  My husband is now using the PEG in the morning along with his oatmeal beacuse after 1/2 cup of oatmeal he doens't want to put anything in his mouth but still needs the calories and protein.  I am glad that the Dr. ordered the PEG placement before the treatments began.  Everyone is different though and everyone's journey is different.  Your husband has to do what feels right for him. Just know that by the 3rd or 4th week the mucous begins and the throat becomes irritiated and it really is hard for them to want to eat or drink.  Just remember to take a deep breath before the appointment.  They cover a lot of info but if you have a good dr and good nurses you are set.  The nurses are the ones that really make this bearable.  Our nurses are incredible.  They take all my calls, answer the questions, push for meds for my husband, etc... The infusion nurses are rock stars!  I hope you have that support where you are.  They will get you through it.  And you will get through it.  Day to day.  

AnotherSurvivor

I did carbo/taxol for chemo,

I did carbo/taxol for chemo, if it's more mild I don't even want to see cisplatin.  It depends on the oncol, but I think they tailor chemo to patient. Certainly most of them know the different characteristics by now.  Carbo first put me to sleep, then caused extreme reactions about 4 hours after delivery.

 I would enquire as to support, and how you schedule additional infusion session of things like saline drip.  You may not need it, but towards the end I was getting 1.5L every day, which led me to get a PICC port.  Much better than getting stuck by needles.  My infusion team became huge in importance.  It started out as one day a week, it eventually became a large part of every day.  I had great docs, but I really love my infusion team.

PEG lines are an interesting topic.  My oncols didn't like them, but would do them if the circumstances required.  I think they start considering one when weight loss passes 10% of initial weight.  PEGs both contribute to, and complicate things in recovery.

 I got IMRT (radiation) rather than IMPT (proton).  Again, trade offs.  Radiation got my stray suspect node, but made recovery more difficult.   They can reduce and retarget IMRT if the tumor shrinks but it's up to the oncol.  I was replanned in week 4 because my tumor shrank fast, but by week 4 my side effects were close to fatal. 

The cancer treatment is only part of the mix, and now days quite effective.  The support is critical.  Get clear, clean communications channels (PHONE NUMBERS!)  thru which to report changes and get support.  You don't want to have to wade thru some of the up-front support people when you're in crisis.

Get a log book and write EVERYTHING down.  My wife made a record of all weight, all blood presure, blood ox levels, dosages, specialists wandering thru, etc.  It proved to be very valuable as we went thru treatment.  Also, my wife became my brains.  Even when i was doing okay there were many things I missed.

Nancy24

Chicklette said:

Proton Therapy

we are also going to ask about proton therapy since the hospital has a proton center.  Anyone have experience with proton therapy?

Proton Therapy

My husband had proton therapy at Scripps this past summer along with weekly Cisplatin.  He currently has no evidence of disease (NED).  I read the other response to your question about proton therapy and you should definitely ask about the concern about preciseness.  My husband's proton radiation oncologist made a point of telling us that he adds margins to ensure that he got all of the cancer cells, both at the primary tumor and to the lymph nodes in his neck.  In fact, although there was no evidence of cancer in his lymph nodes on the right side of his neck, the oncologist did give him a lesser dose of proton beams on that side just to be sure.  He said there was probably some spread to that side but it just wasn't evident yet and why take a chance.  My husband plays harmonica and he wanted to minimize the impact to his saliva glands, hence he chose proton therapy as it did not impact the saliva glands in the front of the mouth under his chin.  That being said, he still has dry mouth (his last treatment was August 30) but if he waits an hour or so after eating, he has enough saliva to play harmonica (plus spraying Biotene helps).

Nancy

rsp

Notebook is crucial!

I agree with AnotherSurvivor about the importance of the notebook.  We actually have two. One is to write down all of the appointments and what is discussed at each one, as well as record weight, blood pressure, etc. at each appointment.  The other book is to keep track of all the medications.  It is so easy to forget to take something. I found my husband was in no condition to be responsible for remembering to take his medications and which one he should be taking when...  I have all of the medications listed for each day with the time to be taken.  Then, I put a line next to it so we can check off when my husband takes it. Yes, the notebooks are absolutely necessary!

Chicklette

Thank You

Thank you for all of your advice and suggestions.  This is a bit scary, but I know we will get through it!  I will definietly be keeping a notebook.  We will ask about the proton therapy and see what they say, but where he has an unknown primary, I don't know if that is really going to be an option.  But, it never hurts to ask for sure.  He is planning to get a feeding tube.  We know how important it is to keep up the calories to keep up his strenght to fight this beast.  I know he will also need some dental work before he gets started with rads.  I think he is dreading that more than the cancer treatment :-P 

Thanks again for all the advice.  It's much appreciated.

~Chicklette~

caregiver wife

Treatment and getting through

After  more than five years...  Husband's tumor was VERY large when first discovered - from above his ear, down his throat and wrapped around his larnyx.  Please do not think his experience is typical.  

He did not have proton therapy, but they were still able to get all the tumor, even closely targeted around the larnyx.  We learned there are 40 muscles in the neck and all were damaged by radiation.  

Peg tube/feeding tube: this is a double edged sword.  Exercising/using those 40 muscles is essential!  My husband was very heavy and lost more than 100 lbs.  He did not start out with peg tube but did get one when it became needed.  It is an outpatient procedure, so I would not worry about it until/if you cross that bridge.  My husband became unable to swallow even his saliva.  Oncologist sent him to speech therapist that gave him exercises that he did three times a day religously to considerable success.  IF you become dependent on feeding tube, there are nutritional products with twice the nutritional value/calories of Ensure.  We use Two-Cal as he is still dependent of feeding tube.  IMPORTANT to remember to hydrate on feeding tube.

Keep things simple.  I used/use a pocket folder.  Our questions/doctor answers, reports, appointment schedules, etc all go in folder, newest on top.  I can always find whatever I need and it is all in order if I feel I need to review.  Appointments all on wall calendar when received.

Meds - husband has many:  I keep a tub.  All regularly taken in a gallon zip lock.  Special instructions, changes on note in bag.  Any over the counter, occassional in tub. I fill up a pill sorter once a week, reading labels EVERY time.  Never any question if meds have been taken.  I always know when I need to call pharmacy.  ANYONE could know what he is/has taken.  I have taped a page of notebook paper on kitchen cabinet  door for recording pain medicine, given as  needed.

Husband was not strong enough due to age and heart condition for chemo at time of diagnosis.  Had Erbitux with radiation.  Was NED (no evidence of desease) for about 4 years.  He has since had Erbitux again after recurrence and then Carbo/Taxol now for nearly a year, to continue as long as effective indefinately.  Tolerated fairly well.  The one thing we experienced was his reaction to steroids given with chemo as he became aggresive and violent.  This is now controlled with medication.  That said, Erbitux with Carbo/Taxol is a common protocol for first line treatment.  He takes Neulasta day after chemo to keep his white blood cell count up.  This can cause muscle pain.  So for 5 days after Neulasta, he takes Loratadine (an over the counter antihistamine) that has been proven by study to help.

Husband is stage 4 with mets to lung.  He is old.  He has had other complications that we have had to deal with.  But we have crossed every bridge one at a time, and we have gotten to the other side every time.  There is no spread of desease.  He is active, walking 2 to 5 miles per day.  He is pain free, save for flu like symtoms 2 to 3 days after chemo.  There are other treatment options should chemo become no longer effective.

I don't post a lot about my husband's experience because his has been the extremes that most will not experience.  My point is, he has survived, even  thrived, and tolerated treatment well.  This board is the BEST!  Will be here to share whatever experience you may encounter. 

Remember to breathe.  One day at a time.  Everyone's condition/experience is different.   Your husband is alreay ahead of the game with and informed advocate.

Best Wishes,

Crystal

ratface

You don't need to know everything going in

The medical oncologist has already done a workup on your husband's cancer and will consider all variables as what type of chemo to use on him. Things considered are biopsy/lab results, how the cancer is differentiated under microscope, the stage, and size of tumor. They also know that most unknown primaries tend to be in the tonsils. They will look closely at bloodwork. Expect an inquisistive friendly professional interview. Respect his/her recomendation, you might ask for justification over one protocol vs. another but in the end respect their recomendation absent an equally informed opinion from yourselfs. These people know what they are doing, trust them!

Cisplatin dosen't always cause hearing loss nor nurapathy. Doses given every 21 dys will be the strongest. Dosing by the day or weekly will adjust downward, depending on the patients physical ability to tolerate the drug. This can be adusted down the road based on bloodwork and white cell counts as time goes by.

Ask about a thourough dental exam before beginning radiation either with your dentist or a staff dentist. Don't worry about delaying treatment while you consult the dentist, this stuff dosen't grow that fast, you got time now and it will pay huge dividends in the future.

Ask about being assigned a staff nutritionist for the duration of the treament. 1/3 of cancer patients die of malnutrition, and this cancer makes it really hard to eat. That said don't fear the feeding tube, if it's recomended just do it. While it's true that it can be done later on that assumes that he is in good enough physical condition to get the procedure done, it's a bear of a procedure and not something to be done in a weakened condition.

The radiologist has probably already worked up a plan for the radiation plan in days, intensity and cycles and duration. This is usally mapped from a pet scan or ct scan and they have it all layed out in a big binder, ask to see it. Ask to view an actual radiation cycle. There is a big glass viewing room where the techs operate the machine and monitor patients, they will let you peek in to get an idea. Typically they do a mop up operation the last week of radiation hitting suspected spots with lower doses just in case, your husband will notice the machine taking a different path and the duration will probably decrease. You will want a record of the radiation delivered for your own records, this becomes important later on for dental procedures as well as second cancers should they arise years later. There will probably be limited time slots in the beginning, take what is available knowing that as people finish you will be able to negotiate for their time slots and get something that fits your schedule better.

Probably the worst part of the day will be the mask fitting, it's an unpleasant but tolerable procedure and your husband might need some hand holding afterwards. 

I cannot stress enough the importance of finding a point where you put yourself in their hands and just get on the bus and go for it, don't leave there unless you are at this point. All the best to you both, this stuff is beatable!

MMDowns

Good luck today! Thinking of

Good luck today! Thinking of you and your husband.  Remember, it is a lot of info but you can always ask questions at the end.  If something doesn't seem right or you are confused, ask away!  After the appoinntment take deep breaths and enjoy the weekend.  The ENT dr. that first diagnosed my husband and did his surgical biopsy told my husband "you're a person first and a cancer survivor second."  Those words we repeat to each other when days are tough or we are a little scared or a lot scared.  Cancer is ONE chapter in your lives.  Keep that faith and hang in there!

Chicklette

Waiting

Thank you for the support and encouragement.  We are currently in the waiting room waiting for the 11am appointment... tick tick tick 

MMDowns

Chicklette said:

Waiting

Thank you for the support and encouragement.  We are currently in the waiting room waiting for the 11am appointment... tick tick tick 

Oh yes, the waiting game...

Oh yes, the waiting game... not my favorite game. But, we are forced to play.  

Chicklette

Everything went well

Well, everything went well at our appointment.  We asked about the proton therapy and the radiation oncologist checked, but he was not qualified because of the unknown primary.  But, the treatment plan sounds very doable.  36 Rads with weekly low dose cisplatin.  We asked about Erbitux, but they highly recommended the cisplatin because it's effective.  The doctor assured us that with the low dose cisplatin the side effects are not as bad and that she has only had two patients who developed hearing loss or neuropathy.  This doctor has been doing this for a long time as has the radiation oncologist.  The radiation will focus on BOT and tonsil beds and the sides of the neck.  They think they can spare the salavary gland on the right side so that will be good.  Hubby has to visit a dentist next week to make sure all is good with dental health.  Then on the 10th we have the scan, mask making and chemo class.  So, things are starting to come together.  Thank you everyone for the well wishes and support.

~Chicklette~

MMDowns

Sounds good!  Now you have a

Sounds good!  Now you have a game plan and it seems like a very good one.  Enjoy the weekend!  

Chicklette

Feeding Tube

oh, and they won't put in a feeding tube unless it becomes necessary. :-)

Chicklette

MMDowns said:

Sounds good!  Now you have a

Sounds good!  Now you have a game plan and it seems like a very good one.  Enjoy the weekend!  

Thank You

Thank you :-). You enjoy the weekend, too.

MMDowns

Chicklette said:

Feeding Tube

oh, and they won't put in a feeding tube unless it becomes necessary. :-)

OK!  My wish for both of you

OK!  My wish for both of you is that he does not need it  "Everyone is different."  Favorite mantra of doctors and nurses!

Chicklette

ratface said:

You don't need to know everything going in

The medical oncologist has already done a workup on your husband's cancer and will consider all variables as what type of chemo to use on him. Things considered are biopsy/lab results, how the cancer is differentiated under microscope, the stage, and size of tumor. They also know that most unknown primaries tend to be in the tonsils. They will look closely at bloodwork. Expect an inquisistive friendly professional interview. Respect his/her recomendation, you might ask for justification over one protocol vs. another but in the end respect their recomendation absent an equally informed opinion from yourselfs. These people know what they are doing, trust them!

Cisplatin dosen't always cause hearing loss nor nurapathy. Doses given every 21 dys will be the strongest. Dosing by the day or weekly will adjust downward, depending on the patients physical ability to tolerate the drug. This can be adusted down the road based on bloodwork and white cell counts as time goes by.

Ask about a thourough dental exam before beginning radiation either with your dentist or a staff dentist. Don't worry about delaying treatment while you consult the dentist, this stuff dosen't grow that fast, you got time now and it will pay huge dividends in the future.

Ask about being assigned a staff nutritionist for the duration of the treament. 1/3 of cancer patients die of malnutrition, and this cancer makes it really hard to eat. That said don't fear the feeding tube, if it's recomended just do it. While it's true that it can be done later on that assumes that he is in good enough physical condition to get the procedure done, it's a bear of a procedure and not something to be done in a weakened condition.

The radiologist has probably already worked up a plan for the radiation plan in days, intensity and cycles and duration. This is usally mapped from a pet scan or ct scan and they have it all layed out in a big binder, ask to see it. Ask to view an actual radiation cycle. There is a big glass viewing room where the techs operate the machine and monitor patients, they will let you peek in to get an idea. Typically they do a mop up operation the last week of radiation hitting suspected spots with lower doses just in case, your husband will notice the machine taking a different path and the duration will probably decrease. You will want a record of the radiation delivered for your own records, this becomes important later on for dental procedures as well as second cancers should they arise years later. There will probably be limited time slots in the beginning, take what is available knowing that as people finish you will be able to negotiate for their time slots and get something that fits your schedule better.

Probably the worst part of the day will be the mask fitting, it's an unpleasant but tolerable procedure and your husband might need some hand holding afterwards. 

I cannot stress enough the importance of finding a point where you put yourself in their hands and just get on the bus and go for it, don't leave there unless you are at this point. All the best to you both, this stuff is beatable!

Thank You

that was very good advice.  They are doing 30 (I forget the measuremeant) of cisplatin once a week along with 36 rads.  They will have us consult with a nutritionist and my hubby  will see his dentist next week.  Mass General is a great hospital and I'm glad we made the decisions to seek treatment there.