dont know

ben2bue

Hello I just discovered this site today,,and so far it has been the most helpful and uplifting so far,,

Its actually not me that has cancer

My wife was receiving treatment for a toe (bone) infection through strong antibiotics twice a day intravenously at home (pic line) she began to complain of a sore throat about 7-8 weeks into treatments,,I or her didn't think a whole lot into it,,thought it may be thrush from antibiotics,,ad it got worse she would tell her infusion dr about it to be blown off or told she shouldn't worry about that,,,finally the dr. took a look in her throat,,and sent her immediately to see a ent. dr and he informed her that there was nothing that he could do for her,,,that this cold be serious!!! WOW!!! she saw a cancer dr and had a biopsy within a week,,and this past Tuesday Oct. 15,, my wife was diagnosed with stage 4-A SCC!! she is to receive seven weeks of rad and chemo,,but first they had to check her teeth to see if they would be healthy enough to withstand the rads,,unfortunately she has a reseeding gum line and eight of her teeth will have to be pulled!!!ugh!!!the issue now is trying to find a dentist or oncologist to perform the procedure within her insurance network!!and also the healing time delays the cancer treatment significantly,,and within just a few days she says she feels the SCC growts getting bigger and spreading!!  don't really no what to do at this point!! VERY stessfull and VERY scared for her,,she is telling me she would LOVE to have a couple a drinks but I'm not sure how it would affect her with the SCC!! if there is anyone who could give me any advice or words of encouragement I could really use it

KTeacher

Sorry

So sorry that you needed to find this site but glad that you found us.  Many on the site had tonsil cancer and also at Stage IV.  You will find support and encouragement, feel free to ask questions.  You might want to check out the Superthread, good information for before, during and after treatment.  Many on the site were not diagnosed until taking antibiotics for a time when doctor's thought infection. 

Skiffin16

Welcome...

WOW, sorry for your news and situation....

I was STGIII SCC HPV+ Tonsils and a lymphnode..., HPV is "the" new (relatively) big contributor of H&N cancer these days...

Anyways, first, an ENT that can't do anything concerning H&N cancer..., definitely ditch that guy...

As for your treatment plan, that's not uncommon... My self, I had nine weeks up front (three week cycles) of Cisplatin, Taxotere and 5FU, then your wife's regime (or similar) seven weeks of weekly Carboplatin, and 35 daily rads sessions...

I didn't need the extra dental work up front, so I only had a few delays with this that and the other, plus a power port for the chemo to be infused.

The time frame for the dental work isn't usually that big of a deal, and the cancer even though she might think she feels it growing, more than likely it isn't (at least a very fast rate)... Many here have went through similar wait times as your wife...

As for the few drinks..., if she isn't in Tx at the moment, and nothing other than her Dx is prevented a few drinks..., go for it, it's going to be a while once treatment starts.

Check out the SuperThread, first post in this forum, tons of great info there...

Hang around, more survivors will chime in...

BTW, I was 55 when Dx, January 2009, Tx ended June 2009..., clean and clear since...

It's rough, even brutal for some..., but very doable.

Again, welcome...,

John

longtermsurvivor

Hi Ben

First both of you take a deep breath.  There is time to get all this done.  The feeling that this thing is growing every day is just that this has overwhelmed her and the perception is that there is no time to get everything done.  But it isn't growing every day, and there is time, and you guys will get into the system and get the right things done.

Your story is actually pretty common.  And the delay you will eperience is pretty common too.  We all wish for a cure today, but objectively several months may go by before they really get to treat her.  It will still work out that way.  Dental extractions can be a royal pain, but they aren't crushingly expensive.  They can delay treatment for a few weeks, but it is  still better to get them done now as they will be a problem later.

So work out the details, stay focused on the important stuff.  Use your resource people.  And believe.  Many of us are here following the ordeal you guys are just now starting, still around to talk  aboutt it.

 

Best to you both.

 

Pat

 

 

CivilMatt

getting started

ben2bue,

Welcome to the H&N forum, where being scared is normal.  Once all the information overload is over and you have a plan, you will be on your way to getting through treatments.

I was stage IVa, scc, bot, hpv+ & 1 lymph node (surgery, rads & Erbitux).  It may be a tough next couple of months, but sometime around the start of the year she will be free of cancer and getting better.

We have a good idea of what side effects she will get, but there are tips and meds to help you through.

My rad onc required a personal call from my dentist before I got the “green light”.

I still shake my head and wonder what happened and at 18 months post I am feeling better every day.  Matter-of-fact I had barbeque tonight with coleslaw and hushpuppies and was amazed how good it tasted.

The both of you will be ok, with many years ahead of you

Matt.

josh r.

CivilMatt said:

getting started

ben2bue,

Welcome to the H&N forum, where being scared is normal.  Once all the information overload is over and you have a plan, you will be on your way to getting through treatments.

I was stage IVa, scc, bot, hpv+ & 1 lymph node (surgery, rads & Erbitux).  It may be a tough next couple of months, but sometime around the start of the year she will be free of cancer and getting better.

We have a good idea of what side effects she will get, but there are tips and meds to help you through.

My rad onc required a personal call from my dentist before I got the “green light”.

I still shake my head and wonder what happened and at 18 months post I am feeling better every day.  Matter-of-fact I had barbeque tonight with coleslaw and hushpuppies and was amazed how good it tasted.

The both of you will be ok, with many years ahead of you

Matt.

Good to hear concerning you.

Hi Matt,

That's good stuff you offered to "ben2bue" but I was also happy to read that your taste buds are waking up! What a great gift. congrats and all the best,. josh r.

phrannie51

Hi Ben....

I'm so glad you found us....this is the very, very best forum on the internet.....you'll find compassionate, smart, and supportive people here at all hours of the day and night.....no question will ever go unanswered.

As those above me have stated, from the day of diagnosis to the first day of treatment we've all had a "wait time"....mine was 6 weeks, and didn't even have any teeth to contend with.  She'll be healing from tooth extractions while they map out her treatment....the delay isn't going to affect the outcome.  I sure understand how she feels.....the second we hear we have cancer we want it OUT....NOW!!  The biopsy has probably aggrevated her throat, making it "feel" like something's happening when it's not....I had a needle biopsy of the lymph node on my neck....it went from being the size of the tip of my finger, to half a thumb...it was PO'd at having been messed with....but it didn't make any difference.  She'll be less anxious once the treatment starts....there's a lot to be said for finally getting to take part in the fight.

I'm also thinking that the delay time will get that toe healed up before they start knocking her immune system with chemo....

When I look back at treatment, there were a few things that seemed to be "the worst possible things" to happen when they did, but now in hindsight I see where these happenings were either inconsequential or they were the best things to happen. 

Just stick close to this board, and ask questions as they come up.....do check out the Superthread....it is packed full of info.

p 

hwt

CivilMatt said:

getting started

ben2bue,

Welcome to the H&N forum, where being scared is normal.  Once all the information overload is over and you have a plan, you will be on your way to getting through treatments.

I was stage IVa, scc, bot, hpv+ & 1 lymph node (surgery, rads & Erbitux).  It may be a tough next couple of months, but sometime around the start of the year she will be free of cancer and getting better.

We have a good idea of what side effects she will get, but there are tips and meds to help you through.

My rad onc required a personal call from my dentist before I got the “green light”.

I still shake my head and wonder what happened and at 18 months post I am feeling better every day.  Matter-of-fact I had barbeque tonight with coleslaw and hushpuppies and was amazed how good it tasted.

The both of you will be ok, with many years ahead of you

Matt.

Ben

Sounds like you are going to be a very good caregiver, just like my husband was. Don't read too much on the internet. Everything moves quickly at the start, slow down and breathe deep. My 1st suggestion is to get a calendar if you don't already use one. My next suggestion is to "take it as it comes and deal with it". Don't worry about things that may or may not happen. Start by having the teeth removed and move forward from there, one step at a time. May God bless you and your wife on this journey.

Candi

robswife87

phrannie51 said:

Hi Ben....

I'm so glad you found us....this is the very, very best forum on the internet.....you'll find compassionate, smart, and supportive people here at all hours of the day and night.....no question will ever go unanswered.

As those above me have stated, from the day of diagnosis to the first day of treatment we've all had a "wait time"....mine was 6 weeks, and didn't even have any teeth to contend with.  She'll be healing from tooth extractions while they map out her treatment....the delay isn't going to affect the outcome.  I sure understand how she feels.....the second we hear we have cancer we want it OUT....NOW!!  The biopsy has probably aggrevated her throat, making it "feel" like something's happening when it's not....I had a needle biopsy of the lymph node on my neck....it went from being the size of the tip of my finger, to half a thumb...it was PO'd at having been messed with....but it didn't make any difference.  She'll be less anxious once the treatment starts....there's a lot to be said for finally getting to take part in the fight.

I'm also thinking that the delay time will get that toe healed up before they start knocking her immune system with chemo....

When I look back at treatment, there were a few things that seemed to be "the worst possible things" to happen when they did, but now in hindsight I see where these happenings were either inconsequential or they were the best things to happen. 

Just stick close to this board, and ask questions as they come up.....do check out the Superthread....it is packed full of info.

p 

Hang in there

it will all work. 

Are you at a Comprehensive Cancer Center? We were at U or M in Michigan and they have a dental school.

We were told we HAD to see there dentists for the exam. They work as a total team. Once they extract the teeth you will start treatment within about 2 weeks. They did the extractions and made the radiation guards. They also made him a flipper tooth because one of his extractions was a front tooth. Still fighting with the insurance company because they think it was true dental work. $1200.00 for all the work but I make payments to them. We have no dental insurance and it should be covered under medical because of the situation. 

At that point I did not care about the money, we wanted to just get treatment started.

As far as growing, most likely not. Rob had the biopsies done and it caused swelling which makes it feel like it is growing fast but it is not. 

Prayers to you all

Sandy

debbiejeanne

ben, i had a different cancer

ben, i had a different cancer but i just wanted 2 say welcome and sorry u need 2 b here.  you will get a lot of great info and personal experiences here that will help u thru this journey.  the wait time will go by quickly and tx will b started b4 u know it.  will b praying 4 u and ur wife.  please keep us posted on her progress.  again, welcome!

God bless.

dj

nick770

Hey, I think what the others

Hey, I think what the others have said is spot on. And you story brings me back to when I was first Dx'ed.

Hang in there always ask questions and push for answers. they wanted all of my wisdom teeth removed i only gave them one and i wish i havent dont that.  understand it is easy forthem to give you a blanket treatment pan but i would ask them them to consider your wifes health ans age and to consider how much "treatment" they are going to give. Perhaps i'm ranting now , but we are all different and one size treatment..oull all teeth, blast with rads & chemo and viola! " that isn't the way it should be.

If possibe seek a second opinion if you can see if they will tailor the treatments acording to her not just according to the disease and the "typical course of action".

SCC of the heasd & neck had very high cure rates but the TX is of the most brutal out there. And ike most have said SCC is a slower progresing disease.

Don't let them scare you. Have a drink or 2 or three with her. Breath a little. stick around the forums and you will receive soem of the best and truthful information and love from people whom have been through this. true heart to heart advice from EXPERIENCED patients. 

I;m not saying doctors dont have good/great advice what i'm saying is your wife is an individual person a dn the doctors see 20+ folks a day. They simple don't have tiem to sit down and walk you through everthing you two may or may not expereience.

Hondo

Hi Ben

 

I am not much help on your wife type of cancer, but looks like you got a lot of information already. For now I will just say welcome you to CSN H&N and hope you stay on as you will find a lot of help here while your wife is going through treatment.

 

Wishing you the best

Hondo

j4mie

Hi Ben...

I do not have H&N cancer, however my husband does. I wanted to tell you a bit of our experience so far.

My husbands cancer was in his left tonsil and metastisized to one lymph node on the left side. He was diagnosed in August 2013, had surgery (complete tonsilectomy, and removal of 29 lymph nodes) in Sept. and he just started rads about a week and a half ago. The week before he was to start rads he went to the dentist and found out that he needed a root canal, this set us back a little over a week. After the root canal healed, mask had been made and we were all ready to start he ended up with another dental problem that threatened to set us back again...So, what I'm trying to say is, I understand how each setback can make you feel like your losing the battle before you even started the fight. Hang in there, this really is a slow growing cancer!

We are in the midst of rads now, and I have to say that those extra couple of days/weeks to figure out things we needed to stock around the house to help get him through this, prepare a few freezer meals for the days we were both too tired, and prepare our child for what was to come was really a blessing in disguise.

When the time comes for your wife to get going on the treatments, it will be a relief! For the time being, use the extra time to get all of your ducks in a row, and go ahead and enjoy a drink or two.

Best wishes to you both!

Jamie

Hummingbird3

Hi Ben2bue,  you've found a

Hi Ben2bue,  you've found a new family here.  These guys are amazing.  You can be encouraged to know that no matter what your feeling...it will be real, no matter where you find yourself and your beloved in the journey there will always be ears to listen and hearts with so much compassion to feel with you and help carry you through On here.  As everyone has shared....YOU both WILL get through this.  Finding faith not only in each other but confidence in those you are entrusting your wife with will be huge.  

All of what you shared sounds to be the normal protocol to prepare your wife for the best of care.  In my personal circumstance my dentist worked in unison with my radiation doctor. I am 4 months out from surgery in June and 5 weeks out from 6 weeks of radiation, so I am in the post rad recovery stages I guess you'd say.  My Dx was different so i cant respond specifically to your wifes Dx.  My tumor was in the parotid salivary gland.   I learned through this journey of mine it definitely takes a village.  Don't hesitate to reach out.  There is a wealth of information on here.  This definitely is not the walk in the park we choose and the unknowns can grip us with fear...but there will be blessings through it and the sun(SON) will truly shine again!  

Keep the faith,  

Christie

we can do all things through Christ who gives us the strength to do so...Phil 4:13

ben2bue

thank you

I would like to THANK everyone who replied to my initial post!!!

Everyone was so helpful and uplifting!; does anyone know of any help with copays??

longtermsurvivor

ben2bue said:

thank you

I would like to THANK everyone who replied to my initial post!!!

Everyone was so helpful and uplifting!; does anyone know of any help with copays??

there is help

there are many many available programs.  A bunch of them renew financially on January 1, but some are available even in the fall.  My medical oncologist had a great social services department right in the clinic.  They were very helpful at steering me in that direction, even filling out applications, etc.  That's a good place to start, because researching on your own, while fighting cancer, can be pretty overwhelming.

 

Pat

TracyLynn72

ben2bue said:

thank you

I would like to THANK everyone who replied to my initial post!!!

Everyone was so helpful and uplifting!; does anyone know of any help with copays??

I fought this thing with NO insurance

Ask the doctors/oncologists/dentists/etc.. if there is a social services department at their facility.  Meet and talk to the financial advisors/payment plan specialists at each place.  I was upfront from the beginning about needing help and they found it for me.  I would have never gotten Medicaid if it weren't for my social worker at the hospital.  There IS help available.  Fight until you find it.