About to begin the Journey

Welcome to the group.  Your presentation  is classic for HPV mediated cancer.  Was the tissue tested?  Just curious to know, because if positive for HPV 16, your prognosis is waaaayyyyyyy better than 50-50.  Your treatment plans sound pretty standard, not much fun but pretty survivable.  Cardiac disease is also pretty common in the age-group, and by itself shouldn;t present any insurmountable problems. 

Good luck with the work.  Some of us are able to handle that, others not.  Just do the  best you can, but be sure you have some backup plans for how to handle things if chemo  or rads get you down.  Tired, you will be.  That's for sure.

Anyway, welccome to the group.  Sounds like you've got a good plan, and things are moving along.

Pat 

I'm so glad you found us, even tho the reasons for having to look us up aren't very fun.

I can tell you that you will make it thru the treatment...it's not particularily fun, but it's absolutely doable.  I had narsal pharyngeal carcinoma, so surgery was out for me.  I had the 35 rads like you're getting, and Cisplatin chemo every three weeks, for 3 treatments...then after rads, I had another 3 Cisplatin treatments along with a 4 day continuous 5FU fanny pack (that's the part they are skipping, I assume because of the heart stuff).  I finished treatment the end of August.....and was back to work in October. 

My main advice?  Stay off the internet looking for survival rates....they are scarey and not necessarily true.  You will find a number of people here who have survived for years without mets or reoccurance. 

As far as planning to work thru treatments....you might pull it off if you have a job that is very light duty....or if you can do it from home.  Like Pat said, have a back up plan, because you are going to be VERY tired, and in some pain from the radiation.  I didn't get much of a sore throat myself, but my mouth took a beating....Sleep is so very important during treatment....The three top things you need to pay attention to during treatment are:  Hydration (keep water near and drink as much as you can every day)....nutrition (that gets tricky once you start treatments because of nausea and pain)....and SLEEP! 

You're going to get thru this tho, and return to what they call here "abi-normal", which is in essence a new normal.....It's going to be ok....truly!

We have other fishermen here, too.....so some folks to swap fish stories with .....

p

fishmanpa said:

"abi-normal"

Hi P,

Thanks for the note, advice and welcome. I hear you about reading too much. I've read and decyphered medical docs to Wikipedia entries to exhaustive lengths! I need to re-focus and concentrate on what this will do to "me" and not worry what has happened to others. 

My primary physician had a unique perspective on this. I've stared death in the face two times since 2007. The situations with my heart would have taken most but I just walked away not too much worse for the wear. It's kind of my MO. I have to think this is just another situation like that. 

I like the term "abi-normal"... my life is already entering that phase as I prepare for treatment. They haven't given me the actual start date but I'll know this week I'm sure. In the mean time, I'm doing my bucket list of foods that I want before I start treatment as I know it'll be a long time before I will enjoy them again if ever  

Thanks again for your replay and welcome. Continued blessings on your recovery!

"T"

"T"

As the story goes around here - glad you found us, but sorry you have to be here.  First off, I'm a numbers guy and love statistics and graphs and charts, but the advice from around these parts is - IGNORE all those stats you're reading on the internet.  They could be out of date, not directly applicable to your dx, etc.  Read the Super Thread that's at the top of the list on the H&N site here.  Lots of helpful information.

The next thing - we could be twins, except no musical talent here and also I'm pretty ugly (well I guess you could be ugly too - just kidding).  I was Stage IV also; had bilateral node involvement (10 nodes total); SCC of tonsil.  Started tx with tonsillectomy and neck dissection.  Dx'd when I was 53 also.  Agree tonsillectomy was not fun.  Followed that with concurrent chemo(3 cisplatin)  and rads(35). 

Just wanted to say, I'm 3 years out from surgery this week and doing pretty dang good.  And there's a bunch of us in that group that are doing well.  And even more encouraging, there are real longtimers like Pat and John and others around here also.  This is do-able and beatable and there are a lot of folks here to answer any questions.  I'm not on here as much as I once was (or as much as should be).

The other saying - Everybody is different, and they are.  You'll see the full gamut of how people react to tx.  Just read (SuperThread) and be prepared for the worst and hope for the best.  And as my buddy John says - keep that PMA (Positive Mental Attitude)!!

Positive thoughts coming at ya!

Greg

fishmanpa said:

"abi-normal"

Hi P,

Thanks for the note, advice and welcome. I hear you about reading too much. I've read and decyphered medical docs to Wikipedia entries to exhaustive lengths! I need to re-focus and concentrate on what this will do to "me" and not worry what has happened to others. 

My primary physician had a unique perspective on this. I've stared death in the face two times since 2007. The situations with my heart would have taken most but I just walked away not too much worse for the wear. It's kind of my MO. I have to think this is just another situation like that. 

I like the term "abi-normal"... my life is already entering that phase as I prepare for treatment. They haven't given me the actual start date but I'll know this week I'm sure. In the mean time, I'm doing my bucket list of foods that I want before I start treatment as I know it'll be a long time before I will enjoy them again if ever  

Thanks again for your replay and welcome. Continued blessings on your recovery!

"T"

...about eating everything you love and everything you ever wanted to try, now while it still has some taste.....but it sounds like you thought of that already.  I ate so much Mexican food before I started treatment, I developed an accent....LOL.  It sounds to me like you have your head set for treatment and a good recovery.....that's at least half the battle....so you're starting out really good.

Coming here during treatment was one of the smarter things I've done in my life.....the folks here are way smart in the practical side of this.....things to use, things to do....and answer questions that the Dr.'s just look at us like "hey, I don't know everything."  Which when it comes to how to actually get thru this with the least discomfort, somebody here will have gone thru the exact same symptom and will have an answer.

p

i too am similar to your diagnosis, nothing in the mouth or throat. i had 5 golf ball size nodes wrapped around my carotid. back in those days it had to be reduced in size before surgery. i also had no primary and they did not test for hpv then. i did not smoke, drink but 2-3 beers a week, and was only 38. 

i am with greg on the thought of numbers and stats. as told to me by my ent at the time. "we are not a number, either you will make it or you will die and i believe you will make it"  my chances back 17 years ago yesterday were slim and slimmer. with all the new equipment for radiation and how they changed amounts along with how often the chemo are given, with the experiences the nurses and doctor have had and taught others i say say it will be much better now than even 7 years ago. 

your treatment side effects can not be pin pointed as everyone reacts differently to them. after listening for a while i would offer two very important thoughts and neither is more important than the other

-  start now with a Positive Mental Attitude (pma), work your hardest to maintain one, don't dwell on anything bad so think for 10 secs the bad thought and then let it go. i was told by my doc in 1996 that kicking cancer's back side was 60-70 percent of the fight. well i differ on that, my wife and sister in law were in there when he told me that and they worked hard to tell everyone around me to always be up beat. it worked and i believe with all my heart and sole that it is at least 80% of kicking butt. a good way to say it is if your eyes hit the floor and hardly rise up, you have given up

- when doing your treatments, take advantage of being able to get IV Fluids as ofter as you feel you need them. several local friends listened, a couple with the chemo cisplatin set up fluids automatically on the 3 day after getting chemo and some every other day after. the whole group here locally and nurses have used that thinking has almost become the standard. it has made a huge difference in how you feel. 

- i will add quickly a third :-) as a man, swallow your pride and accept help

welcome to the beginning of being a SURVIVOR. 

welcome to an amazing home and family here. there is lots of information and support here so feel free to ask any and all questions

john 

YOU WILL KICK BUTT, BELIEVE AND YOU WILL SUCCEED!

Hi T,

I'm sorry you had to make your way here to this forum, but you will find very knowledgable and helpful people with great advice. We have all been on the H & N bus, just maybe different seats at different times. Please feel free to ask questions when you need to. There are some regulars and long time survivors that will help you along the way as well.

First, I'll tell you that my loved one was diagnosed in August with SCC BOT (base of tongue) HPV16+ with 2 lymnodes involved StageIV. He is age 51 and also had a heart attack in 2005 and triple bypass in 2007. He just finished 7 weeks of Chemo (Carboplatin & Paclitaxel) & Radiation and did quite well. No surgery. He did end up with a PEG tube about mid way. That is coming out at the end of this month. This is completely doable. 

Please do not get so hung up on the statistics of 50/50....they are just statistics. Everyone is different in the way they respond to tx. I know a very close friend of ours that also had SCC BOT (smoker)that is already celebrating his 6 yrs of survivorship! 

Stay positive and stay here on this forum and we'll all help you through this. Remember, you are not alone.....We're all on this bus together. There will be many folks here that will chime in and help give you tips through the process...don't be afraid to post a new topic for any issues you have...you will see the outpouring help of others here.

Also, note that his original ENT that diagnosed him sent his biopsy in for testing of HPV and it came back negative. Once we decided on U of M Hospital for tx, they did their biopsy and it came back positive. Don't be afraid to have that checked again by a different lab. And also the ear pain was a problem for us in the beginning because of the lympnodes/nerves/cancer. It is still a bit of a problem...we're assuming the nerves are an issue with it. 

Take Care & God Bless,

~Cureitall 

Hello Mr T, welcome aboard the SS Positive, there are some truely positive people here. I too have arrived here recently and like you about to embark on a journey of the unknown (I hear the x files theme playing in the background). I have cancer of the larynx whereby a growth has blocked my airwaves remedied by a trach through which I breathe. Recently had 11 teeth pulled, power port installed along with a peg tube. Unfortunately I have considerable pain in my left ear from I guess the lump pressing on a nerve, fortunately the strong pain meds make life bearable, the doc sais that pain will subside with radiation treatment. The radiation and chemo therapies start this coming Tuesday. The pet scan showed some hot spots other than my neck, the doc took a lymph node from under my arm to biopsy but was told they couldn't biopsy that lymph for some reason. The chemo doc said he wants to start me off using Erbitux which targets any spread to other parts of the body, (this treatment is not recommended for patients with heart problems). One of the side effects is acne, I'll be like a teenager again (I wish heh heh). The beauty of Erbitux is they give me Benadryl first which will knock me on my butt for the rest of the day so it won't matter what they do after that, I will be in La La Land. Of course the hot spots will have to be understood before proceeding but the chemo doc feels Erbitux will be the way to go.

Where I come from mateship is a very powerful force (Sydney, Australia) and I feel we are all mates here who can depend on each other in many ways. Here is to the beginning of a journey (crikey, I can't even drink now) alongside people who are a force to reckon with. Strewth, if we can overcome the big C we can bloodywell do anything.

Good luck my fellow traveller Mr T

Regards Michael

fishmanpa said:

Thanks everyone

Thanks Everyone for such a warm welcome although I wish it were under different circumstances. It's quite apparent there is much support and information to be had here and I expect to be hanging around a bit. 

Tomorrow starts another week. I'm anxious at this point to get going. The waiting from diagnosis until treatment has been difficult. I'm sure I'll hear from the team this week as to scheduling and I also expect to hear from Johns Hopkins concerning the 2nd opinion. When I talk to them I'll ask them to check again concerning HPV. I have a class on Thursday as an intro to treatment at the chemo oncologist offices. 

Next weekend is a trip to visit my children, family and friends as well as a stop at Tony Luke's in S Philly for the last cheesesteak I'll be having for a while  

I'm confident in my team and they're confident in my outcome. 

November 21st was the day the ENT told me it was cancer. He was sure based on his experience. That will be my new birthday. Here's to not only surviving but continued "living". 

"T"

 

T,

Many folks have already given you some great advice, so I won't copy that.  I would suggest that you think ahead a bit and figure out how you and your partner/caregiver are going to manage this little journey you BOTH are about to take.  While everyone's journey is different, some of your needs during your treatment and recovery periods are predictable to some extent, and can be managed up front to reduce the stress and strain on you and your caregiver when things get difficult--and they will.  And, be sure that your partner stays healthy, strong and upbeat through all of this.

My other standard advice for newbies is that, in the immediate future your battle is not with cancer--it's with the side effects from your rads and chemo treatments, so get ready for that and plan ahead as much as you can.

I formed Team Mike, and made my wife the team captain.  All care and logistical management stuff went through her, so my main 'job' on Team Mike was to get well, which I have done for nearly 4 years now.  And, don't be afraid to lean on others--friends, family, HNC/CSN folks.  No one makes it through this alone, so figure out who can help and what they can do--and let them be a part of this.

You will be OK.

Mike