getting started

susanc1

Hi everyone! Hubby has recently been dx with base of tongue cancer and freely admits he is in denial, so I have become the designated reseacher and found this site, which i have been reading for several weeks. We are now at the first oncologist visit and meeting with the radiation oncologist tomorrow. I plan on using this site frequently and decided to begin paritcipating rather than simply being a "lurker."

AS we move forward with these initial visits I was wondering what questions we may need to be asking...

 

thx

 

s

CivilMatt

welcome

S,

Welcome to the H&N forum, a place where many of were surprised to find out it was cancer.  Denial or not, if it is confirmed, then you have cancer and your next step is a plan for treatment.  It sounds like you are at the start of planning and there is a lot to learn, but do not worry  you will get smart fast.

A lot of the questions will come from the type and intensity of treatments prescribed.  It is difficult to say exactly what side effects he will get, but if you have been lurking lately then you have a good idea.  Such as, dry mouth, sore mouth, tongue and throat, sores in mouth, tongue and throat.  Eating food may lose all appeal and become a chore.  Extreme fatigue and possible sleeplessness.  Swallowing may become next to impossible.

BUT it does get better and you can move forward without cancer!

It is best to get your head in the game and play to win.

Matt

 

susanc1

thanks Matt for the heads up and the welcome!I do have a pretty good isdea of what to expect and hubby is slowly getting on board...kicking and screaming....or more like pouting. I plan on visiting often!

 

s

CivilMatt

some ?????????

How much radiation?

What type of chemo?

What are the side effects of each?

PEG or not?

Check teeth?

How’s his health?  Blood pressure, kidneys, liver, lungs, etc??

Nutritionist?

Mental health?

2^nd opinion?

Driving?

Working?

Speech?

Be prepared!

susanc1

got it

Matt

 

perfect! we had some of these but you brought up some I had not thought about. I really appreciate it!

s

MarineE5

Base of Tongue cancer

Hi Susan

I had Base of Tongue cancer in 2004, I had surgery first as I wanted the tumor out of me and had a couple of Lymphnodes involved as well. After recovery from the surgery, I had 30 Radiation treatments. Chemo was a back-up in the event of reoccurance which has not happened. 

As you can see, Matt covers the bases with this.

Ask questions if you are not sure about something. Someone here more than likely has experienced it in some form or other.

My Best to Both of You

NoTimeForCancer

Thank you, CivilMatt!  As a

Thank you, CivilMatt!  As a warrior I do know everyone is different, but this is helpful when my co-worker shows up and wants to talk.  He is going in for a biopsy but already is preparing for the worst.  I told him not to get too far ahead of himself and there is lots of good support out there.  If his biopsy comes back as malignant I will recommend he come and chat will all of you.  

Prayers for all the warriors.

The arn man

Sorry to meet you this way

He'll come out of that denial soon enough. Let him enjoy it. His life will never be the same. I had a base fo the tongue growth with lymph noid involvement a few years back.

Swallowing is going to be the biggest thing in his life very soon if it isn't already. If he's going to have radiation treatments you need to talk about his teeth. When you get radiation treatments it kills the salivary glands. some of them will never come back. The lack of saliva will cause the enamel on his teeth to deteriorate and his teeth along with it. I foolishly I thought I could save mine. For a while I was brushing them constantly. I had the little brushes with toothpaste already in it with me all the time. But it was no use. I had 8 removed before treatment. I should have had them all removed so I could get dentures. At this point I've got 11 teeth left. no chewing teeth and only in one place do I have a top tooth and a bottom tooth that meet making it possible to chew. I've got three broken teeth and have been fighting a series of infections in my mouth. 

I have asked to have the remaining teeth removed so I can get dentures but I'm told that because of the radiation I'm not a candidate for extraction surgery for fear of infection. It doesnt seem to matter that every couple of months a rotten tooth breaks and then gets infected.

This a big decision. My advice is to have them all removed.

Do yourself a favor.  Think this one through.

yensid683

Quick tips

I had a similar diagnosis in March of 2012, stage IV-a, base of tongue with extension into the left cervical lymph nodes.  I was treated with induction chemo, concurrent chemo and radiation and then finally surgery

tip #1 - hydrate.  Hydrate, hydrate, hydrate.  I did not do it the way I should during induction chemo and it greatly impacted my kidney function (which has fortunately recovered)

tip #2 - if something isn't clear to you or your husband, ask to have it explained again.  We for the most part, are uniformed medically so we need to make sure we ask questions, even if they seem stupid.  Remember, you're PAYING these people for these services, get your full value

Tip #3 - swallow.  Radiation treatment will impact the ability to swallow, which can become permanent if you don't regularly swallow. 

Tip#4 - if you get an infusion port, ask about the potential for it to cause deep vein thrombosis.  I didn't, my port caused a clot in the right jugular.

Tip #5 - if you get a PEG tube (highly recommended, based on journal items I read, the majority of deaths to head and neck cancer patients were due to nutrition issues) make sure you clamp it off if he has to cough, sneeze, laugh etc.  I found out the hard way that if you have the clamp open and sneeze, stuff will spray out of it.

tip #6 - be prepared for a long struggle.   I started active treatment in mid-April of 2012 and was not back to some semblance of normal until May of the next year.  Recovery happens but it is very slow.

Tip #7 - caregivers tend to suffer in silence, not talking about their feelings to the loved one they're caring for.  It adds to your stress and will add to his.  Don't be afraid to talk to him about how YOU'RE feeling

Tip # 8 - the people on this site are family.  we've been there and done that and had every experience you could imagine.  We know what it's like and we know what to do.  Don't be afraid to ask!

susanc1

MarineE5 said:

Base of Tongue cancer

Hi Susan

I had Base of Tongue cancer in 2004, I had surgery first as I wanted the tumor out of me and had a couple of Lymphnodes involved as well. After recovery from the surgery, I had 30 Radiation treatments. Chemo was a back-up in the event of reoccurance which has not happened. 

As you can see, Matt covers the bases with this.

Ask questions if you are not sure about something. Someone here more than likely has experienced it in some form or other.

My Best to Both of You

update

We saw the radiation oncologist last week and he will have a minimum of 35 radiation treatments and chemoas well. Still waiting on exactly what that will will entail. WHile I have seen much written on the effects of radiation...not so much on chemo. He was told that they were going to be very aggressive with him. I am sure more questions will arise and I am hoping he will come ont he site as well...I think the support here will be helpful to him.....

susanc1

The arn man said:

Sorry to meet you this way

He'll come out of that denial soon enough. Let him enjoy it. His life will never be the same. I had a base fo the tongue growth with lymph noid involvement a few years back.

Swallowing is going to be the biggest thing in his life very soon if it isn't already. If he's going to have radiation treatments you need to talk about his teeth. When you get radiation treatments it kills the salivary glands. some of them will never come back. The lack of saliva will cause the enamel on his teeth to deteriorate and his teeth along with it. I foolishly I thought I could save mine. For a while I was brushing them constantly. I had the little brushes with toothpaste already in it with me all the time. But it was no use. I had 8 removed before treatment. I should have had them all removed so I could get dentures. At this point I've got 11 teeth left. no chewing teeth and only in one place do I have a top tooth and a bottom tooth that meet making it possible to chew. I've got three broken teeth and have been fighting a series of infections in my mouth. 

I have asked to have the remaining teeth removed so I can get dentures but I'm told that because of the radiation I'm not a candidate for extraction surgery for fear of infection. It doesnt seem to matter that every couple of months a rotten tooth breaks and then gets infected.

This a big decision. My advice is to have them all removed.

Do yourself a favor.  Think this one through.

dental

Arn man

He has a dental appointment Wed morning and hopefully he will get to keep his teeth but I am not predicting anything. I am sory that you are having so much trouble and I will pass your experience along to him.

s

susanc1

yensid683 said:

Quick tips

I had a similar diagnosis in March of 2012, stage IV-a, base of tongue with extension into the left cervical lymph nodes.  I was treated with induction chemo, concurrent chemo and radiation and then finally surgery

tip #1 - hydrate.  Hydrate, hydrate, hydrate.  I did not do it the way I should during induction chemo and it greatly impacted my kidney function (which has fortunately recovered)

tip #2 - if something isn't clear to you or your husband, ask to have it explained again.  We for the most part, are uniformed medically so we need to make sure we ask questions, even if they seem stupid.  Remember, you're PAYING these people for these services, get your full value

Tip #3 - swallow.  Radiation treatment will impact the ability to swallow, which can become permanent if you don't regularly swallow. 

Tip#4 - if you get an infusion port, ask about the potential for it to cause deep vein thrombosis.  I didn't, my port caused a clot in the right jugular.

Tip #5 - if you get a PEG tube (highly recommended, based on journal items I read, the majority of deaths to head and neck cancer patients were due to nutrition issues) make sure you clamp it off if he has to cough, sneeze, laugh etc.  I found out the hard way that if you have the clamp open and sneeze, stuff will spray out of it.

tip #6 - be prepared for a long struggle.   I started active treatment in mid-April of 2012 and was not back to some semblance of normal until May of the next year.  Recovery happens but it is very slow.

Tip #7 - caregivers tend to suffer in silence, not talking about their feelings to the loved one they're caring for.  It adds to your stress and will add to his.  Don't be afraid to talk to him about how YOU'RE feeling

Tip # 8 - the people on this site are family.  we've been there and done that and had every experience you could imagine.  We know what it's like and we know what to do.  Don't be afraid to ask!

wow

His rad doc said he doesn't want to give hubby a port. In fact he cautioned him against losing more than 10-15 pounds. He is encouraging him to keep working on swallowing and to try to avoid fibrosis. The dr. told it me that it was my job to ensure that he had a bland diet and to help him keep his nutrition up. Well...duh....but still....I am not exceptionally fond of this idea given what I have read here. Hubby thinks he has this .....and I am a little more cautious. But as i noted earleir...I am hoping he will come on this site himself becuase I think you all have a great deal to offer him. I really appreciate your feedback and support and will pass it along to him :0

s

RottiesMom

Hi Susan

I was diagnosed with Stage IVA (metastized to 2 lymph nodes) tonsil cancer.  Treatment is 3 infusions of cisplatin  (chemo) and 7 weeks, 5 days a week radiation.  I have had 2 Chemo and 3 weeks done for radiation.  Today starts my 4th week and my last chemo is Aug 2.  I do not have a port as my chemo dr said I have really good veins.  I have a feeding tube as I only weigh 109 lbs and if I started losing weight by the time the time the tube was put in I would have lost too much weight.  I was sent to my dentist and to have my hearing tested before anything started (cisplatin messes with your hearing ).  My dentist made me fluoride trays to wear at night to protect my teeth which I've done up to last week.  It's getting hard because I'm starting to feel effects from radiation.  So far my hearing hasn't been effected and with one more treatment I'm hoping that will continue!!  My radiation oncologist also gave me stretching exercises to do!  I am on neurontin and magic mouthwash for pain, 2 anti nausea meds.  I try and drinks lots of water, ensure, and now down to soft mushy food as it is hard to swallow.  I am new here and haven't finished treatment, but if you have any questions I can try and answer.

Joanne