Hubby with tonsil cancer with lymph node involvement

robswife87

My husband of 25 years was diagnosed with tonsil cancer withlymph nodes involved on March 8. He has had a lump on his neck for 9 months before we finally got it checked. I must say the news of this was devastating.

We have since gotten in at the University of Michigan Hospital and met with the Oto, RO and dentistry. MO is next week along with Rad Simulation and mask fitting. He had a neck biopsy On March 18 for confirmation and had tonsil biopsies yesterday. They have also confirmed a small spot on back of throat PET scan confirmed nodes on other side of neck also. Clear below neck.

They are not doing surgery just Rad/Chemo. We know 35 Rads not sure but sounds like weekly chemo. Dentisty has to pull one bad molar and his front tooth. The front tooth has been dead for years and is not a problem for radiation but is for chemo because of low grade infection that stays in that tooth. 

He doesn't get teeth pulled until April 9 and then we have to wait to weeks for radiation. The wait to start is nerve racking. 

We do know that it is T2-3N2bMO SCCA. We will find out HPV or not from yesterdays biopsy although he is a smoker. 

We both made the mistake of looking on the internet and I spent a entire week crying until I accepted this is what he has been dealt. 

I now find all of you wonderful people who are living proof that it is not a death sentence and read many posts about what to expect and how I will be able to help him through this nightmare. You are all angels here on earth to share your stories of hope while having to go through this yourselves. 

And what is NED?

boardwalkgirl

NED is No Evidence of

NED is No Evidence of Disease, so that is what we all pray for at every scan and check up. I know a lot of people say to stay off the internet but I read everything I could find, but here is where you will find your best info, from the people and caregivers who have lived it. I even read a book written by a local attorney who had the same thing and I cried thru reading the book but I had myself prepared for the worse and when it didn't seem as bad as I had prepared myself for, I was relieved. No doubt about it that the caregiver has it as bad if not worse than the patient but you will both get thru this, together. Ask questions and come here for support. Will be praying for you.

KTeacher

Welcome

to a club that no one wants to be in.  Sorry that your search on the internet upset you, we have all been there.  Check the Superthread, so much info for the journey.  You will find some vrery honest, supportive survivors and caregivers on this site.

robswife87

boardwalkgirl said:

NED is No Evidence of

NED is No Evidence of Disease, so that is what we all pray for at every scan and check up. I know a lot of people say to stay off the internet but I read everything I could find, but here is where you will find your best info, from the people and caregivers who have lived it. I even read a book written by a local attorney who had the same thing and I cried thru reading the book but I had myself prepared for the worse and when it didn't seem as bad as I had prepared myself for, I was relieved. No doubt about it that the caregiver has it as bad if not worse than the patient but you will both get thru this, together. Ask questions and come here for support. Will be praying for you.

He is a rock

As of now Rob has been a rock as I was the one to fall apart and wish it was me instead of him and of course my first thoughts were of losing him. He has such a good attitude and never has gotten down with the diagnosis. The dentist had tears today because he has such a positive attitude. I am starting to embrace his attitude and get over my pity party, which of course I feel guilty about. 

He says he knows I will step up when it gets going. I try to be at every appt., but having a job does make it difficult. I have been at all the important ones. I ned to keep my job all the while wishing I could just be home with him through this whole thing. I thank the Lord we have to adult kids in college and live at home that are here for a lot of help to go to appts. when I can't. I want to make sure he has someone with him at all times during this. 

We know this will be rough, but we will get through it and beat it. He is just worried about money. He is the main financial contributor to the house and with 2 kids in college we live paycheck to paycheck and are already feeling the pinch because he has already missed a lot of work because of the appts. right now.

I am trying to get him off the focus of money and let me deal with that. He needs all of his energy and focus to be on beating this cancer.

if anyone would like to share products or meds that they use to deal with the side effects of radiation and chemo, I would love  hear everything so I can start planning.

I am a planner for everything and this is not something I can plan for much. But if there is anything about this I can control please let me know.

Sandy

Skiffin16

Welcome...

First and foremost...., as you already figured out..., limit your research on the internet, LOL...

In January 2009 I was Dx with STHIII SCC HPV+ Tonsil Cancer and a lymphnode. Nine weeks of chemo in three week cycles (Cisplatin, Taxotere and 5FU), that followed with seven weeks of concurrent weekly Carboplatin and the 35 daily rads sessions...

All clear since finishing up June 2009....

It's rough but very doable...

Again, welcome aboard..., there are plenty of awesome people here, and many willing to share whatever they can to make your journey as easy as possible.

Check the SuperThread like mentioned...

Best,

John

phrannie51

You managed a week on the internet??

I managed 2 days of my internet adventure, and was ready to leap out of my skin....that tells me that you're both tough, and will get through this treatment just fine.  This disease is not a death sentence as you will soon find out from the people on this board.  Treatment is not a walk in the park, but it is very doable.  Emotionally, you're going through the worst part now....the waiting game....waiting for everybody to get their plan together.  It is not unusual for it to take a few weeks to go from diagnosis to first day of treatment.  I was diagnosed on March 5th of last year, and had my first treatments on April 24th.  Once in treatment....even when a person feels pretty crappy....they know they are actively fighting the disease.....that seems to boost moral.

There's not a whole lot you can do for "planning"....just knowing  that he'll needs lotions and potions for his neck (Aquifor, Calendula cream, Aloe Vera).....looking into where you can get liquid nutritian for a good price (Boost, Ensure, etc).....oh, and see about Mugard before he starts radiation.  It is a mouth sore preventative.....and has to be started before mouth sores do.  Some Dr.'s hand it out easily, some never heard of it, and some act like it couldn't possibly work.  But it does work if started when rads start.

He's going to want to quit smoking....radiation is bad enough on the throat, I can't imagine how smoke will feel.....the pain will probably be an incentive to give it up. 

I'm very glad you found this forum.....it is the BEST on the internet.  You will be wrapped in support and care the whole time you ride this bus.  Welcome aboard.

p

HelenBack

The waiting is the worst

The waiting is the worst--well, at least I hope so, as we haveen't started treatment and the waiting has been unbearable. Such a strange feeling to be eager to start something that's gonna suck. 

My husband has the exact same staging as yours and had a bump at the base of his tongue for months before we got it checked out. He had surgery first and is due to start rads and chemo next week. His diagnoss was back in January so I know how you feel about the waiting.

As you have noticed, people here are immensly helpful and supportive, so stay off the internet and just listen to your doctors and these fine people at CSN. I can't seem to stay off the internet myself and it's just a roller coaster of encouraging and not-so-encouraging junk that in the end doesn't actually apply to your husband anyway. That time would be better spent enjoying the time you have before things get rough. As long as the place your husband is being treated has had a lot of experience with head and neck cancer, they will know the latest protocol. 

It's good that you are a planner because that should come in handy for setting up all the eating, swishing and lotioning routines. Our RO said that her patients that can get a set schedule going, have better results managing side effects. 

Good Luck,

Helen

 

CivilMatt

robswife87 said:

He is a rock

As of now Rob has been a rock as I was the one to fall apart and wish it was me instead of him and of course my first thoughts were of losing him. He has such a good attitude and never has gotten down with the diagnosis. The dentist had tears today because he has such a positive attitude. I am starting to embrace his attitude and get over my pity party, which of course I feel guilty about. 

He says he knows I will step up when it gets going. I try to be at every appt., but having a job does make it difficult. I have been at all the important ones. I ned to keep my job all the while wishing I could just be home with him through this whole thing. I thank the Lord we have to adult kids in college and live at home that are here for a lot of help to go to appts. when I can't. I want to make sure he has someone with him at all times during this. 

We know this will be rough, but we will get through it and beat it. He is just worried about money. He is the main financial contributor to the house and with 2 kids in college we live paycheck to paycheck and are already feeling the pinch because he has already missed a lot of work because of the appts. right now.

I am trying to get him off the focus of money and let me deal with that. He needs all of his energy and focus to be on beating this cancer.

if anyone would like to share products or meds that they use to deal with the side effects of radiation and chemo, I would love  hear everything so I can start planning.

I am a planner for everything and this is not something I can plan for much. But if there is anything about this I can control please let me know.

Sandy

welcome

Sandy & Rob,

 

Welcome aboard the H&N forum.  I hope we make your stay manageable

 

As was said up above, read the superthread first at least give it a skim top to bottom, then start building your war chest (needed supplies).  It is always better to be prepared, especially at night and on week-ends.

 

You both will do fine, the cancer world is a strange place to be in, but after you take care of this issue you can look forward to many happy years.

 

Stop by and ask questions when ever the need arises.

 

Matt

debbiejeanne

no, this is not a death

no, this is not a death sentence.  it will be a rough road but very doable.  the side effects are awful but they too pass.  it will be important to keep a positive attitude throughout treatment.  also, come here often and ask any questions you may have.  this is a good place to be with lots of Great people to support you on your journey.  hang in there and stay connected.

God bless,

debbiejeanne

 

Tim6003

debbiejeanne said:

no, this is not a death

no, this is not a death sentence.  it will be a rough road but very doable.  the side effects are awful but they too pass.  it will be important to keep a positive attitude throughout treatment.  also, come here often and ask any questions you may have.  this is a good place to be with lots of Great people to support you on your journey.  hang in there and stay connected.

God bless,

debbiejeanne

 

Welcome...

All good advice above...but one thing you touched on that I would like to share with you is finances.  As a H&N cancer patient SSI is "usually" automtice for 16 months.  It may be he never needs it and though you still have the waiting period, you never know how each person will respond during treaments (he may take longer to heal) .....

This is not shared to cause you grief or more worry, but I just feel I would be remiss as one of your fellow warriors if I did not share with you some good advice the SS office gave me.  Fill out the paperwork fully with them to assist you. If you are back to work in 3 months or never fully have to stop work, great.  But if you for some reason have a few delays and go past 6 months, the SSI will kick in.  It's just prudent to have all irons in the fire since we never fully know how each of our body will respond in the treatment / healing process.

 

Sounds to me like he will do great and has a great caretaker!!  We will be with you until you meet Mr. NED 

 

Tim

 

I was base of tongue with lymph node involved HPV+ Stage III  14 months out since last treatment and I am NED

NOTE:  I was one who was not able to work for 3 months, then went back to work for 1 month very limited ...never did need SSI, but it was ready if I had

robswife87

Tim6003 said:

Welcome...

All good advice above...but one thing you touched on that I would like to share with you is finances.  As a H&N cancer patient SSI is "usually" automtice for 16 months.  It may be he never needs it and though you still have the waiting period, you never know how each person will respond during treaments (he may take longer to heal) .....

This is not shared to cause you grief or more worry, but I just feel I would be remiss as one of your fellow warriors if I did not share with you some good advice the SS office gave me.  Fill out the paperwork fully with them to assist you. If you are back to work in 3 months or never fully have to stop work, great.  But if you for some reason have a few delays and go past 6 months, the SSI will kick in.  It's just prudent to have all irons in the fire since we never fully know how each of our body will respond in the treatment / healing process.

 

Sounds to me like he will do great and has a great caretaker!!  We will be with you until you meet Mr. NED 

 

Tim

 

I was base of tongue with lymph node involved HPV+ Stage III  14 months out since last treatment and I am NED

NOTE:  I was one who was not able to work for 3 months, then went back to work for 1 month very limited ...never did need SSI, but it was ready if I had

Thank you for courage

We are both of the mind set that we will beat this, we also know that it will get rough but that there is light at the end of the tunnel. 

I know he will get to a point of giving up and that is where the rest of us come in. Bring in the clowns. 

I already know that you all will become really good friends for me during this struggle and after. I have read stories of courage and emotions that have already lifted my spirits. There are way to many survivors of this nasty disease not to be encouraged. 

Thank you all for all the help you have provided and will continue to provide for my husband and I

Sandy

Grandmax4

I'm going to welcome

you folk, even though you're from Michigan~~~I'm Ohio, you know, OHIO State:) I didn't find this site until I had already had my surgery and was recovering, now, I feel like most of these great people are friends.

Attitude and determination, will go a long way ~~having a team of Drs you trust, and the knowledge and caring you find on this site~~you're way ahead of the game.

I had surgery November 2,2011 at The James Cancer Center in Columbus, Ohio..cancer of the epiglottis, I was blessed that it had not spread and I avoided chemo and radiation. The road back to my new normal was bumpy at times, but very doable. After 1 year, 5 months~I'm swallowing,speaking in a clear,solid voice, and eating whatever I want.

O-H-I-O  Go Buckeyes!!!

Duggie88

Hi Sandy

In order for you to join this club, you'r initiation is to ask questions as you and Rob go down the rough road ahead and allow all the great  individuals on this site take turns in helping you both avoid some of the pot holes ahead. The best part and your reward, will be to get through it all and come back and help others to do so.

      Jeff

fishmanpa

The daily grind...

Hi Sandy and as many have said... welcome to the club you really didn't want to join

You'll find as I did, that the folks here are full of support and information. They certainly helped me get through bootcamp!

DX's Nov. 30th 2012 - SCC Tx N2b MO Stage IV - 2 tonsillectomies (palatine and lingual), 2 sets of biopsies and laryngoscopies, no primary found.

As one who is in the midst of the battle (halfway point next Wednesday), I want to shed a little more light on what's coming up. I guess the best way to put it is...

You can read (and I know you have as all of us have) all you want and speak to as many people as you want concerning what they experience, but until you're there you won't really know. It's like the difference between looking at pictures of the Grand Canyon and actually standing on the edge. That being said, the statement "It's rough but it's doable" should read "It's brutal but you'll survive" ~lol~

Just buckle up and get ready for the ride. Have confidence in your team and do what they say.  A positive attitude is your best ally. 

Positive thoughts and prayers!

"T"

Hard12Find

Welcome

Mr. and Mrs. Rob, Sorry you had to find this little group of wonderful people, but I want to encourage you that this Cancer is very treatable and beatable. I was diagnosed on Aug 30, 2012, right tonsil, three nodes involved, 35 radiation, and high dose chemo. I just received a clean 3 month post treatment PET scan, so hang in there. There will likely be some tough times, but you guys can do it together......

By The way stay off the NET, as you will scare yourself to tears, but this site has accurate information and it is presented in a positive way, so I would say try to keep your  research here. NED by the way is "No Evedince of Disease" a place you will be happy to be in a matter of months.....

Once again welcome.

Jim

Lovethesun

Same boat

Robs wife's situation sounds identical to mine. I have been reading this discussion group and decided to join after reading her post.  My husband was diagnosed with right tonsil cancer with lymph node involvement on February 4 , 2013. Pet scan with NED below the neck. He is receiving 35 radiation treatments over the course of 6 weeks concurrent with Cisplatin- 2 rounds. This is week 4 and today is the second and hopefully last chemo treatment. I am finding it helpful to read other posts. Thanks for sharing and being positive for those of us who are new to this diagnosis.

CivilMatt

Lovethesun said:

Same boat

Robs wife's situation sounds identical to mine. I have been reading this discussion group and decided to join after reading her post.  My husband was diagnosed with right tonsil cancer with lymph node involvement on February 4 , 2013. Pet scan with NED below the neck. He is receiving 35 radiation treatments over the course of 6 weeks concurrent with Cisplatin- 2 rounds. This is week 4 and today is the second and hopefully last chemo treatment. I am finding it helpful to read other posts. Thanks for sharing and being positive for those of us who are new to this diagnosis.

welcome

Lovethesun,

 

Welcome to the group, your husband is just getting in the thick-of-it.  Feel free to pick our brains if you need any information,

 

Matt

Lovethesun

CivilMatt said:

welcome

Lovethesun,

 

Welcome to the group, your husband is just getting in the thick-of-it.  Feel free to pick our brains if you need any information,

 

Matt

Thanks Matt!  I will be sure to do that when I have a little more time to explore this site.  Such a blessing to be able to communicate with others who are experiencing the same thing.

 

Pam

 

Skiffin16

Lovethesun said:

Same boat

Robs wife's situation sounds identical to mine. I have been reading this discussion group and decided to join after reading her post.  My husband was diagnosed with right tonsil cancer with lymph node involvement on February 4 , 2013. Pet scan with NED below the neck. He is receiving 35 radiation treatments over the course of 6 weeks concurrent with Cisplatin- 2 rounds. This is week 4 and today is the second and hopefully last chemo treatment. I am finding it helpful to read other posts. Thanks for sharing and being positive for those of us who are new to this diagnosis.

Did You Say Boat...

Alright, another fisherman..., I love that..., LOL.... Welcome Pam, to our hole in the internet...

OK, I'll be good...

I had a similar Dx as you, back in Jan2009... STGIII SCC Tonsil HPV+ and a lymphnode, both right side. A little more aggressive on treatment.., tonsils out, nine weeks of Cispatin, Taxotere and 5FU, then the seven weeks of concurrent weekly Carboplatin, and 35 aily rads..

Next month or so will probably be the hardest, thanks to rads...

But, as you alreay know, t's rough but very doable...

BTW, check out the SuperThread (first post on the forum), tons of awesome information on there...

Looking forward to hearing of your success in the coming months..

Best,

John

Ruben and Jude

Thank you for your post.

My husband was recently diagnosed as well. His diagnosis and your feelings are nearly a mirror of ours. I have been a wreck, he has been the rock. He had his tonsils taken out two weeks ago, and two teeth pulled 4 days ago. He was fitted for his mask on Thursday and will be starting chemo and rad in a week or so.

I've been such a mess and I am so thankful this support is here. I'm taking notes and advice from the responses you've gotten.

Thank you for your writing. I'm having a difficult time writing exactly how I feel, but you pretty much said it all for me.  I will keep in touch.  God Bless.  

 

phrannie51

Ruben and Jude said:

Thank you for your post.

My husband was recently diagnosed as well. His diagnosis and your feelings are nearly a mirror of ours. I have been a wreck, he has been the rock. He had his tonsils taken out two weeks ago, and two teeth pulled 4 days ago. He was fitted for his mask on Thursday and will be starting chemo and rad in a week or so.

I've been such a mess and I am so thankful this support is here. I'm taking notes and advice from the responses you've gotten.

Thank you for your writing. I'm having a difficult time writing exactly how I feel, but you pretty much said it all for me.  I will keep in touch.  God Bless.  

 

Welcome Ruben and Jude....

and luvthesun....I didn't expect to find so many newcomers at the end of a thread!!   This is the best forum on the internet for support and information.....not to mention just plain friendship while going thru these treatments.  I hope to see you come back when things get into groundhog days (thats the never ending, day after day....radiation, rest, and back on the horse tomorrow)....

p