And so it begins..

SuzJ

I have found the waiting around to be the worst part, waiting for appointments, waiting for results, waiting, always waiting.

Back in December, I had, what I thought, was an ear ache with some pretty damn sore lymph nodes. So with my insurance, I have teledoc, handy for the stuff you don't want to trek to the Drs office for. Nice Doc called, azithromycin z pack, and steroid z pack, if not better go see my primary Doc.

Don't get me wrong, I like my Doc, but when I go in for something mundane, I am always sick a week later with whatever some idiot has coughed, sneezed or wheezed on me. So off to the Doc, who felt up my neck and said "hmm, a cyst" so here's antibiotics - 850 mg twice a day, and if this doesn't work, go get an ultrasound. It didn't work, so on Jan 6th, I went for the Ultrasound. This came back, recommending, FNB or CT.

So got set up for a CT scan, had that the 23rd. and waited.. waited.. holding my breath.. 3 days later called the imaging place, asked if they had sent the results to my Dr, and that I wanted a disc of the US and the CT with a copy of the results, and I was on my way in. This spurred a total panic, as they didn't want me reading the results there - so halfway there, I got a phone call from My Dr, "You have some cancer going on" I was in seriously heavy traffic, just pulled over, and bawled. I kinda knew, you know how it is, it's a gut feeling.

I was referred to a Dr whose name I couldn't pronounce, whose offices I had never heard of, so I self-referred myself to VCU Massey in Richmond, VA. I picked who I wanted to see based on education, and reviews.

It was all hurry up and wait, and now it's, "HERE WE GO" I start everything on the 21st, and I am terrified. Not as terrified of this thing in my neck, but I am scared. I do NOT want a feeding tube, actually rethinking a port too.. I really thought childbirth was the end of modesty - then I had kidney stones (when the Dr tells you Lithotripsy is just like being whipped" you have to wonder about the Dr) - and now this.

I am terrified, but I got this!

CivilMatt

welcome

SuzJ,

Welcome to the H&N forum, sorry that you are here and it sounds like your plate is full.

Did they determine cancer from the US and CT or did they have a positive biopsy?

You won’t have to wait long once you are in the serious que, matter-of-fact after waiting around it can go fast.

Do you have an extra set of ears to go with you?  You don’t want to miss anything, unless it is a poor doctor and you go looking for a 2^nd opinion.

In the end, you will most likely do fine and you will have a sound game plan.

For now, one day at a time.

Matt

P.S.  many do fine without a PEG, but a PORT can make things go easier and sometimes a PEG can too.

 

SuzJ

The US said I "necrotic nodes

The US said I "necrotic nodes" largest was 2 x 3 x 4.6

CT said SCC

FNB said SCC non keratinizing

Biopsy where I had my teeth ripped out - T3 N 2b M 0 +HPV

 

2 months ago, this was a foreign language...

 

Game plan is 3 x Cisplatin (every 3 weeks)

Radiation every day x 7 weeks.

I hate pain meds with a passion, I did the day ,, 5 days after biopsy and teeth with Tylenol because I won't take Hydrocodone - it doesn't work on me, kills my head, leaves the pain.

Thanks for the welcome!

Sue

CivilMatt

wait and see

SuzJ,

I had stage IVa, scc, bot, 1 lymph node, hpv+ (surgery, rads, Erbitux).

Treatments can be brutal at times, but other than throat, mouth and tongue discomfort, which I used magic mouth wash (6 bottles), I took no pain meds.  I also had painful neck burn which I used silver sulfadiazine cream (no pain meds).

So, see it is possible to be uncomfortable, but with little pain. You just do not know how your body will react.

Matt

Noellesmom

I admit to being lost

As to what kind of cancer you have but it does not matter in my opinion on the PEG.

Please reconsider getting this.  Simple before treatment but I understand it is a serious issue after treatment starts.

SuzJ

Questions -

Hair, will I lose it? some all? (chemoradiation)

Voice?

There was another in that short list and I can't remember what it was..

A bit about me - I'm a Brit, I've been here 31 years, my support system is my 25-year-old son. seeing him fall apart when I was diagnosed was the single hardest thing ever.

I'm fine with losing some weight, I have been trying for years! BUT I have to keep working. My job pays the bills, my job pays the insurance and puts food on the table. I have no other option. So if you think I'm being overly optimistic, I'm not, I just have to do this, there is no sit down and rest option for me. I didn't start yet and already Im scared, terrified of that damn mask, sick to my stomach because the day I start, is 2 years to the day since my Mother died of Lung Cancer. My heart is breaking, and I can't fix everyone's problems like I usually do. The bills I have already are huge, .. ok so let's just call this a "small meltdown" I had my bigger meltdown 2 weeks ago

dw195

SuzJ said:

Questions -

Hair, will I lose it? some all? (chemoradiation)

Voice?

There was another in that short list and I can't remember what it was..

A bit about me - I'm a Brit, I've been here 31 years, my support system is my 25-year-old son. seeing him fall apart when I was diagnosed was the single hardest thing ever.

I'm fine with losing some weight, I have been trying for years! BUT I have to keep working. My job pays the bills, my job pays the insurance and puts food on the table. I have no other option. So if you think I'm being overly optimistic, I'm not, I just have to do this, there is no sit down and rest option for me. I didn't start yet and already Im scared, terrified of that damn mask, sick to my stomach because the day I start, is 2 years to the day since my Mother died of Lung Cancer. My heart is breaking, and I can't fix everyone's problems like I usually do. The bills I have already are huge, .. ok so let's just call this a "small meltdown" I had my bigger meltdown 2 weeks ago

RT and Recovery

SuzJ,
I'm currently in my first week of recovery after 7 weeks of daily Proton radiation therapy and 5 rounds of Erbitux. I was in pretty good shape as i'm a cyclist and regularly rode my bike 40 or 50 miles at a time. Even with that, as has been mentioned beginning around week 4 you will become extremely fatigued and it will start to become very difficult to eat. i didn't get a peg tube and luckily since I decided on Proton in lieu of IMRT the rads aren't quite as bad, but now in my first week of recovery after treatment I'm on a total liquid diet with a little bit of watermelon occassionaly.

I'm sleeping at least 12 hours a day and working from home a couple of hours a day. You will not be able to go into an office the final few weeks of your therapy, I hope you can plan around that.

Don

AnotherSurvivor

Odds are very good you

Odds are very good you survive this.  When the HPV epidemic started about 10-15 years ago it took them by surprise, but treatment is now highly standardized and well understood.   They are capable of very high precision on the radiation targeting, and my extent of hair loss was my beard in the target area.

 I would think seriously about the PEG, and a port.  If you are doing self care anything that makes things easier will pay off when you get to weeks 4-7.  I'd lose the idea of using this as a weight loss opportunity.  I started out thinking that, and went an additional 20 pounds beyond.  You will lose weight, plenty of it, weeks 4 - 7 I melted off over 40 pounds.  The effects tend to be cumulative, felt not much up front, flat on your back at the end.  I would look hard into a support group in your area which may be able to help with transport.  

The treatment itself is very straightforward, it is the unknown side effects that will be difficult, and there are very good odds you will have at least one.  I did not do a PEG, ended up getting a PICC port, had an incredible family and friend support net, and needed all I could get by the end.  The extent of my pain medication was a single tylenol to deal with a fever, probably triggered by a reaction to the chemo.  For me, fortunately, pain was not an issue.  I did end up forming pulmonary embolisms, and will be injecting my belly with Lovenox every day at 3PM for the next year.  It was only at 9 weeks post that I was able to move much out of range of my mucus suction pump.

But, again, you have very good odds at being NED in about 5 months.  The delay between end of treatment and your NED PET is due to a three month waiting period after radiation treatments end so the lingering  radiation  can disappate.  Radiation continues to do its thing for a couple of months after your last hit.  Your throat won't really begin to heal until that completes.

I started treatment 11/15/16 for Stage III T-3 N-1 M-0 SCC HPV+ isolated to my right tonsil, did 35 rad (IMRT) 7 chemo (carbol/taxol) ended 01/03/17,  and today I failed once again at cooking a good sunny-side up egg, and will be setting fence posts all day until I head off to sailboat racing class this evening.  But I also ended up logging nearly 10 days of hospital time dealing with side effects.  You will come thru, the journey may not necessarily follow a straight path.  

SuzJ

When I saw the ENT, after the

When I saw the ENT, after the FNB, he said, "yes you have cancer and the treatment is.." and I interrupted with one sentence "Is it curable?" when he said yes, I didn't hear anything else.

Sprint Car Dude

Do it

I had T1 N3 SSC, 7 weeks Cisplastin and 35 radiation treatments. I did great till four weeks in and ended up with a feeding tube anyhow. Lost about 45 lbs and sure wish I had gotten the port as well. 1 1/2 months of post treatment IV therapy 3 times a week and the chemo crushed the huge viens I had. As a nurse I thought I knew the wise things to do by refusing the tube and port. In retrospect I would get the port and peg tube every time. Fight The Fight.

Kapital

treatment

I just wanted to let you know that my husband also hated the idea of taking pain meds. He had a tonsillectomy with a neck lymph node removal and only took the liquid tylenol with codeine once. He said it didn't do anything to help and he didn't like the way it made him feel. He never took any other pain meds throughout his treatment 2 years ago for stage IV tonsil cancer. He had 3 rounds of Carboplatin and 33 rounds of IMRT radiation.  He did not have a PEG or a port. He worked through all of his treatments. He left early everyday and drove himself to his radiation treatments. I went with him the 3 times he had chemo with the radiation. I'm not minimizing the side effect, but it can be done without pain medication and continuing to work. Everyone is different and has a unique experience. I'm not saying it was easy. He lost a lot of weight, as it was very difficult to eat anything remotely solid the last few weeks. It was also hard to stay hydrated. He did go in for IV rehydration a couple of times a week for the last few weeks. It makes you feel much better and I highly recommend it. He took Zofran just before and for 3 days after each of his chemo treatments to prevent nausea. He used pure aloe gel and Miaderm cream at night to keep his skin intact and at the end used Silvadene cream when his neck skin started to ooze the last day. He also used Caphosol mouth rinse to keep any ulcers from forming in his mouth during treatment. Most importantly he made a huge effort to drink everyday and ate some very soft "slippery" foods, such as canned peaches, or a fried egg. None of these things involved pain medication, but they all helped him get through treatment. He is now 2 years post treatment with no signs of cancer and feeling well.  Good luck with your treatment and do what works for you. 

SuzJ

Thank You!

Thank You!

A few years ago, I had carpal tunnel surgery, both at once (I don't recommend this as basic things such as... wiping your butt, became harder than Everest lol)

This was during a World Cup, I mention this because, luckily I had Hydrocodone that killed my head, so it didnt hurt quite as bad, when England bombed out.

I hated how my head felt, and the pain in my wrists was unreal, so I switched to Tylenol, got my head back, and the pain in my wrists went away!

I've never taken big pain meds, partly due to an addictive ex, who liked taking them for me. I stopped accepting prescriptions for this reason.

My other question that I finally remembered was hearing? will I lose some?

How was everyone's voices thru this? hair? did you lose it?

I hate that we lose our identities, that we become diagnoses.

Did any of you ever watch the movie "The Doctor" from 1991? It was very eye opening.

 (I found it on YouTube recently and rewatched it)

I have to stay me thru this, I am Sue, not my diagnosis

rsp

Peg Tube

Hi Sue,

My husband REFUSED to get a peg tube, and as a result, he has lost 80 pounds and is still struggling two months post treatment!  In hind sight, I wish he would have gotten the peg tube... He is struggling to keep weight on.  My recommendation would be to get it.  If you don't need it... GREAT!  But if you do, it will be there.

 

My husband lost his hair from the base of his neck half way up the back of his head.  

 

His voice changes daily.  Some days he sounds like himself, and other days it is difficult to understand him.

 

He hasn't worked since week 2 of treatment.  I don't see him going back any time soon.

 We went to our first support group last week, and there was  a man there who has the same diagnosis as my husband, and is about 3 weeks further along than my husband, and he is running a 5K this weekend!  My husband struggles to get out of bed, is extremely tired every day, and is only eating shakes... I have been driving him everywhere for 2.5 months. We have learned that EVERYONE IS DIFFERENT. What happens to one person doesn't mean that is the way it will go for you.

You will survive, and you will go down this road in your own way.  I am glad that you have your son to help you.  If you have some friends that can help, too, that would be wonderful.

Best of luck.  You will love this site and the brave people who so graciously share their knowledge.  I have found it extremely comforting and helpful.

 

 

Kapital

"The Doctor"

I remember that movie and it left an impression on me as well. As to hair loss, my husband did loose the hair from about the top of his ears down on the back of his head from the radiation. He had Carboplatin for his chemo, with no apparent hearing loss. His voice didn't change at all. He was treated for stage IV tonisl cancer 2 years ago.

MMDowns

My husband was diagnosed in

My husband was diagnosed in early January and started treatments in February, late February. His dr. Insisted we get a PEG and I'm so glad we did. He's near the end of the 3rd week and will being 4th week on Monday. The one line you will hear and sometimes get annoyed with (even though it's true) "everyone is different". so very true. My husband's first week of chemo wiped him out. He has the exact same game plan as you. Chemo 3x and 7 weeks of rads.  2nd and 3rd week were much better however today, with no warning, he got sick. We think the dry mouth gagged him and his gag reflex is so very sensitive. He's been fine the rest of the day. It's the little things that creep up that you least expect. However, there are meds for everything. Best if luck to You. This forum is amazing and has saved me the past several weeks. 

yensid683

So much about Cancer suxxxx

Waiting is a pain, the seemingly callous way that some medical professionals treat you (ignorant piece of living meat), the incomplete information that you get, the lack of warnings, and a fairly insufficient overview of what to expect are just a few.

I was stage IV-a, base of tonque, had induction chemo and because of that lost some hair, had 33 IMRT sessions and 8 weekly doses of Erbitux.  Fortunately there was very little side effects from the Erbitux.

I did have an infusion port and the good side is that it made infusions (chemo and simple IV's) very easy.  I'd recommend getting it unless you have spectacular veins.  I had pretty fair ones and was glad that they never had to go 'digging' to establish a line.  A word of caution, there can be complications from a port, I wound up throwing a clot and while I complained about the port, it was dismissed for 5 weeks as 'likely from radiation'.

I would seriously consider the PEG.  A lot of people have expressed their success in getting through without one, but what made the decision for me was research that showed that prior to the use of feeding tubes, those who lost their fight usually did so because they starved to death.  It is your decision though so whatever you chose, I hope for the best.

You're at one of the best places for getting information that your doctors don't think to go over with you, we've all been there and done that and found what worked and what didn't.

I leaned on my CSN "family" through it all and the people here are just great.

Hang in there, it will get tougher, but it will and does get better.

I am almost 5 years out since I completed treatments and while there are (and will be for you) some permanent changes to deal with, I'm back to what I was before C invaded my world!

SuzJ

I agree, all the insanity,

I agree, all the insanity, the diagnosis, the everyday appts, the phone ringing like crazy (not only hospital, I have a managed care, that also has onc nurses in a different company, that call, and call, and just keep saying "I'm sorry) I want to say LEAVE ME ALONE, your drowning me in "I'm sorry's" It's no one's fault, I didn't do anything, they didn't do anything, just.. I'm drowning.

And now I'm waiting, it was going to be 2 weeks to "give me a rest" but I don't want a rest, I have to do this, so let's do it NOW. Let's rip this thing out and make me better. I'm sorry, I'm sounding like a maniac, and I'm sitting here bawling like a baby. Waiting is the devil.

AnotherSurvivor

Sprint's saga explains why I

Sprint car's saga explains why I ended up with a PICC port.  Not being able to swallow much pushed me towards dehydration.  They deal with that by infusions of saline.  They infuse saline by sticking you with a needle.  With a port, they forego the needle, and just screw on the line.   You will either get a port, or end up getting stuck.  They also monitor your blood chemistry pretty closely due to the chemo suppressing your immune system.  They do that with more needles.   I got my PICC port in week four and loved it immediately.  It came out week 3 post.  There is some infection risk with a PICC, but I treated mine very well and had no problems.

tommyodavey

Pain Meds

So sorry to read about your diagnosis Suz.  Yes, you are in for a rough ride but like all of us here, you'll get through it and the painful memories will fade away.  My suggestion about Hydrocodone is to ask for Percoset (Oxycodone). It didn't seem to make my head all dull but sure helped with the pain.  How people get addicted to it I don't know because I could never feel anything like a buzz.  It just worked.

If I had to do it over I'd get the PEG.  Never in my life had I been so hungry and was not able to get anything down my throat due to the pain.  Ended up losing too much weight but hey, it all comes back.  Well not all, most of it.

We will try to help you with support of the mental kind.  Too bad there isn't a place to get extra money for the treatments and loss of work. My wife had to go back to work full time to barely make ends meet and we have good insurance.  Still, it took us almost two years to pay off the medical co-pays, etc.  But it will all go away and you'll recover just like all of us did.

AnotherSurvivor

You are, by they way, already

You are, by they way, already somewhat fortunate.  I did not discover this site until week 5 of treatment.   Even with good oncols and nurses there were many questions that I finally only got answers to here.  I haven't found anywhere else that even comes close.

Grandmax4

we're here for you

I felt exactly like you do, I just wanted to get this evil mass cut out and get on with my life. My suggestion is to take someone with you, to take notes of what the Dr says, it would be good to include your son in the treatment plan, it will help him understand  what you're going to be going through. It's not going to be an easy ride, just take one day at a time and try to relax. The people on this board are so caring, educated in their cancers, and willing to be with you on this journey