About to begin the Journey

fishmanpa
fishmanpa Member Posts: 1,225 Member

Hello everyone. I'm new to the forum. Glad to have found you all!

I'm 53. I've been diagnosed with Metastatic Squamous Cell Carcinoma of the Head and Neck with an unknown primary. 

The current diagnosis/classification is Tx N2b, MO stage IV. The cancer is in the lymph nodes on the left side of my neck and has spread to lymph nodes in the anterior part of my neck. The tumors are under 6cm but they've been growing over the last month or so as I've been going through the process of diagnosis and preparing for treatment. Originally, the CAT scan done in November showed the tumor at 3.1cm. It's now at about 5cm just prior to treatment. I had a tonsillectomy the 21st of December and have pretty much recovered. They biopsied my tonsils, back of the tongue and nasopharynx and all the results were negative. The laryngoscopy showed no abnormalities. Other than some minor fatigue and my left ear feeling clogged I have no symptoms. No pain, no trouble swallowing, no sore throat (other than from the surgery) and no headaches. 

This does not bode well in everything I've read. I just completed my visits to the radiation and chemo oncologists who feel that they can eradicate the cancer. I'm being scheduled to begin treatment as I write this. I'm thinking it will begin on the 21st. 7 weeks of radiation, 5 days a week and chemo 1 day a week. Having had a tonsillectomy,  I'm well aware of the discomfort and pain I'm about to experience. In fact, the doctors have said this will be worse.... Ohhh Joy! 

My situation is complicated by the fact I have cardio vascular disease and have had two heart attacks and bypass surgery in the last 5 years. The first was in 2007 (triple bypass) and the last was in October of 2012 (stents). Both heart attacks were mild with minimal damage to my heart. Due to that, I'll be getting cisplatin only as opposed to the "cocktail" as the other chemo drugs are a bit hard on the heart.

I'm getting a 2nd opinion at Johns Hopkins but based on my discussions with them thus far, the treatment plan being prescribed is concurrent with the latest data and standards. I will get my treatment locally so I can try to continue to work at my job through this. If surgery is required afterwards, it will most likely be done at Johns Hopkins. 

I'm trying to remain positive but the reality is much different.
The chances of getting this initially are quite good but the long term prognosis gives me a 50-50 chance of being cancer free in three years. There is a good chance the cancer will return in another part of my body and at that point it doesn't bode well from what I've read.

Overall, in spite of everything, I'm in good health. I have no real symptoms. Just a bit of fatigue and a stuffy feeling in my left ear (most likely the tumor is pressing against my eustachian tube). I was a natural body builder for many years and up until recently was a regular gym goer. I have quite a bit of muscle mass which bodes well for the upcoming treatment. The doctors feel I won't need a port or a feeding tube prior to treatment. They'll play it by ear depending on how I tolerate things.

Just wanted to say hello. Anyone who has gone through this and is doing well a few years, please let me know. Any helpful hints are appreciated. Best to all facing the same path...

Blessings...

"T"

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Comments

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    Hey Mr. T......

    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 

  • fishmanpa
    fishmanpa Member Posts: 1,225 Member

    Hey Mr. T......

    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 

    HPV

    Hi Pat,

    Thanks for the reply. Having had HSV since my teens they did test for HPV and it was negative. Unfortunately, this is my own doing. I'm in the music business. I did my fair share of smoking and drinking since my teens. Ironically, I quit tobacco last summer before I noticed the swollen lymph node. Too little too late I'm afraid. 

    I have a desk job. I talk on the phone most of the time. I know my throat will make that difficult bit the doctors seem to feel I should be Ok. I did Ok after the tonsillectomy and that was pure hell. I need to do it for my own mental health as well as financially. No work means no insurance and I'm not in a financial situation to take time off. Fortunately the comapny I work for is behind me 100% and will work with me concerning time off. I've alreay had to cut my hours due to appointments and the treatment will cut into it once I start. I'll just do the best I possibly can. I know I won't be singing and performing for a while but my goal is to back playing and performing by the Spring. 

    The heart issues are under control fortunately. My bloodwork is the best it's been in 7 years. My cardiologist is on board along with the others on the team. 

    As far as what to expect, I've read and discussed it all. Unfortunately, until I actually experience it I won't know. I can imagine but it's like looking at pictures of the Grand Canyon as opposed to standing on the edge looking out yourself. I have a guage with the recent tonsillectomy and all I can say is thank God for good drugs! ;) 

    Thanks again for the note and blessing on your continued recovery.

    "T"

     

  • phrannie51
    phrannie51 Member Posts: 4,716
    Welcome to our little club....

    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 ..... Smile

    p

     

  • fishmanpa
    fishmanpa Member Posts: 1,225 Member

    Welcome to our little club....

    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 ..... Smile

    p

     

    "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"

  • Greg53
    Greg53 Member Posts: 849
    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"

    Welcome

    "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
    fishmanpa Member Posts: 1,225 Member
    Greg53 said:

    Welcome

    "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

     

    PMA

    Hi Greg,

    Thanks for the response! Twin sons from different mothers perhaps :)  I actually bear a strinking resemblance to Mr. Clean, earrings and all. Fortunately, the lack of hair means I won't be worrying about hair loss due to the chemo but losing the hair in my ears and nose won't be such a bad thing ;) 

    Glad to hear how well you're doing. That's truly encouraging. As you know and most here know, it's a roller coaster ride day to day from the time you're diagnosed. I have good moments and not so good moments. 

    Since my first heart attack and the surgery I've lived by these words from Ecclesiastes and King Solomon (I paraphrase).

    "Eat. Drink. Enjoy the work you do. be thankful for the blessings God gives you in this life. Live, love and seek out the things that bring your heart joy. The rest is meaningless, like chasing the wind". 

    I don't fear so much the outcome for myself as much as I do for those who I love and love me. My partner and caregiver who is with me 100% We've been together for two years and she's a blessing beyond belief. My children and family as well. I'm fortunate in that I have a core support group of friends that are pulling for me. That helps tremedously with PMA. 

    I'm glad to have found this forum. It's obvious already I've found a support system and group of good people to share the journey with.

    Blessings and continued good health and recovery.

    "T"

  • phrannie51
    phrannie51 Member Posts: 4,716
    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"

    I forgot to mention

    ...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

     

  • fishmanpa
    fishmanpa Member Posts: 1,225 Member

    I forgot to mention

    ...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

     

    Miracle fruit

    Thanks P,

    My primary physician suggested something I;m going to try concerning eating. There's a product called Miracle Fruit. It's essentially a haluciagen for your tongue. Makes a lemon taste sweet and changes the way we our tongues react to flavors. He said it could help when I loose my taste. Perhaps enhance flavors so I may enjoy eating a bit more. When I mentioned to to my oncologists, they hadn't heard of it. I'll let them and you all know if it makes a difference. 

    I love spicy food and I plan on hurting myself a bit before I get started. Thai, Mexican, Chinese and good old American comfort food until I can't enjoy it for sure. My partner made a leg of lamb this evening and it was beyond delicious! 

    I've already purchased whey protein and plan on having protein smoothies to help maintain my weight. Vanilla is best as you can add fruits, flax seed oil and other vitamins and supplements for nutrition.

    One thing my chemo oncologist recommended was not to take any antioxidants. Vitamin C, A and E. The radiation works by oxidizing the cancer cells and I don't want to inhibit that action. 

    I'm beginning to wrap my head around all of this. It's not like I have a choice! 

    "T" 

  • fisrpotpe
    fisrpotpe Member Posts: 1,349
    very similar

    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!

     

     

     

  • CivilMatt
    CivilMatt Member Posts: 4,690 Member
    Welcome T

    Hi T (High Tea),

     

    Welcome to the H&N club and in the same breath sorry you qualify to be a member.

     

    Hands down you are the most positive, upbeat person I have met along my journey and that is a good thing.  I believe it shows a propensity to roll with the punches and you may be dealt a few punches. 

     

    It sounds like your team is narrowing in on the treatment plan and as Pat said your recovery chances look excellent, let alone your stellar attitude.  I’ll simply remind you to have fall back positions as the side effects can be very unpredictable.

     

    Best,

     

    Matt

  • cureitall66
    cureitall66 Member Posts: 913
    Welcome...

    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 

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member

    Welcome...

    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 

    you raise an interesting point

    and it is completely valid.  For reasons we don't understand, people can test negative in one part of their cancer, and positive in another.  The OP's cancer presents like an HPV positive malignancy.  No primary.  Large, rapidly enlarging nodes.  Reason to be optimistic.

     

    Pat

  • fishmanpa
    fishmanpa Member Posts: 1,225 Member
    CivilMatt said:

    Welcome T

    Hi T (High Tea),

     

    Welcome to the H&N club and in the same breath sorry you qualify to be a member.

     

    Hands down you are the most positive, upbeat person I have met along my journey and that is a good thing.  I believe it shows a propensity to roll with the punches and you may be dealt a few punches. 

     

    It sounds like your team is narrowing in on the treatment plan and as Pat said your recovery chances look excellent, let alone your stellar attitude.  I’ll simply remind you to have fall back positions as the side effects can be very unpredictable.

     

    Best,

     

    Matt

    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"

     

  • Kent Cass
    Kent Cass Member Posts: 1,898
    Welcome

    to the place no one wants to be, though it really is a good place to be. I was also unknown Primary w/two enlarged lymphs on the left side of my neck. Those lymphs showed in November of '08. Tx was 2-4/09, returned to work a month after the last rad, and all my scans have come back clean. Worst of the side-effects are neck spasms, and tooth damage with the dental costs. Carried my Port and PEG for well over a year, and have absolutely no complaints. 

    So, you aren't getting 5-FU? Only Cisplatin? That is a new one on me, I think. Could be due to the heart issues preventing the placement of a Power Port, which is the typical delivery for the 5-FU? And, if you only get Cisplatin- that will be a lot more patient-friendly than most of us got to know, which is a good thing for you.

    Did they say what specific H&N C you have? I was Nasopharyngeal/NPC, as was Phrannie, and some others.

    Critical- have you gotten a Pet Scan? If not- you really need to get one, as we all do. 

    Now, being where you are in the C and tx experience, I also would advise not to overdue the google thing- none of those cases really apply to you. The worst of it, T, is that with the unknown Primary they do not have a target to focus on, and will likely do a widespread rad zapping. The other side of that is good, though, in that there isn't a specific area that's gonna suffer a lotta rad damage. UNKNOWM PRIMARY, to me, means it has been caught in the fairly early stage.

    Among the best advice out there, in my opinion, is to keep the Drs in the loop as to how you are physically, and mentally, doing, because such is very much part of their jobs. And, stay active on this forum to become informed by the experience of other's, so you can advise the Drs when their care is not as good as it should be, if that happens. And keep it in the Positive- ain't no reason to be negative about this, and fall into the self-pity trap. Hey, you got H&N C , as did all of us, here, and as we survived, so shall you. Yep, T, you are gonna survive this, so get used to it! And-

    Believe

    kcass

  • ausrebel53
    ausrebel53 Member Posts: 74
    Welcome fellow newby

    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

     

  • donfoo
    donfoo Member Posts: 1,763 Member
    Welcome.

    We are in the same class of recruits for Q4 2012. I was referred 30 Nov 2012, then initial DX 3 Dec 2012. BOT SCC Stage 4a, M), HPV+, multiple nodes, spots in lungs fron PET-CT inconclusive.

    Just curious but wondering why they took your tonsils? From what you wrote there did not seem to be cancer on them.  

    We are about same timing for treatment as well. Last week was the first consults with RO and MO but I am scheduled for induction chemo upfromt, 3x3 or 3x4 of TPF including the lovely 5-FU. I saw below the comment about the port for it; I figure it was for all the chemo but it makes sense the port is needed to drip 5-FU for several days 24/7. Then I start same regime as you: standard 7x33/35 treatments of chemo-rad but I think cisplatin is what I will get if myt body can take it.

    Joe is keeping us updated with the daily battle reports on the chemo-rad experience. A few sail through but honestly most encounter pretty bumpy road. As has been said here the most important thing to make it out is to vigilantly keep the hydration and calorie intake above mimumum levels. Not doing this results in really nastly side trips along the way to recovery. If you can not get the minimum orally, then PEG up as the first signs your weight or hydration levels start falling. Once you get going most seem very challenged to maintain weight, so if you whatever you lose, you are not likely to gain back during treatment.

    You have found good and knowledgable friends here.

    Good luck,

    Don

     

     

  • Mikemetz
    Mikemetz Member Posts: 463 Member
    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"

     

    Make a plan, form a team

    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

     

  • sassysrice
    sassysrice Member Posts: 117
    Welcome

    You have found a great place for info and support. A place to laugh and a place to cry. A place to vent and share your "joys*. We will all be with you as you journey to fight the beast

    Sue

  • fishmanpa
    fishmanpa Member Posts: 1,225 Member
    donfoo said:

    Welcome.

    We are in the same class of recruits for Q4 2012. I was referred 30 Nov 2012, then initial DX 3 Dec 2012. BOT SCC Stage 4a, M), HPV+, multiple nodes, spots in lungs fron PET-CT inconclusive.

    Just curious but wondering why they took your tonsils? From what you wrote there did not seem to be cancer on them.  

    We are about same timing for treatment as well. Last week was the first consults with RO and MO but I am scheduled for induction chemo upfromt, 3x3 or 3x4 of TPF including the lovely 5-FU. I saw below the comment about the port for it; I figure it was for all the chemo but it makes sense the port is needed to drip 5-FU for several days 24/7. Then I start same regime as you: standard 7x33/35 treatments of chemo-rad but I think cisplatin is what I will get if myt body can take it.

    Joe is keeping us updated with the daily battle reports on the chemo-rad experience. A few sail through but honestly most encounter pretty bumpy road. As has been said here the most important thing to make it out is to vigilantly keep the hydration and calorie intake above mimumum levels. Not doing this results in really nastly side trips along the way to recovery. If you can not get the minimum orally, then PEG up as the first signs your weight or hydration levels start falling. Once you get going most seem very challenged to maintain weight, so if you whatever you lose, you are not likely to gain back during treatment.

    You have found good and knowledgable friends here.

    Good luck,

    Don

     

     

    Here's Johnny!

    Good Morning!

    Thanks for the wonderful encouraging welcome. It's nice to see in the AM. As I laid in bed after the alarm went off, my thoughts almost immediately went to the cancer in my neck. For some strange reason I saw it as Jack Nicholson in that scene in "The Shining" where he breaks through the bedroom door with an axe and says "Heeerrre's Johnny!" Thus is the strange mind of Mark "T" ~lol~ I was giggling under my breath and my partner asked why. I told her and being that she didn't recall the movie made it a private laugh for me, but a few of you might appreciate it :) I'm thinking I'm going to name my cancer "Jack". His demise will be much the same as the character in the movie....frozen solid and dead with that evil grin on his face. 

    A couple of questions were raised in the above comments. I did have a PET scan on Dec 14th, 2102. The lymph nodes on the left side of my neck lit up like a christmas tree. My right tonsil had a slight reaction and warrented further examination. All the biopsies were sent to UVA for analysis and they came back negative. The stain they did for HPV came back negative as well. Fortunately, the PET scan showed me clean everywhere else. They seem to think one of two things. The primary is sub mucousal so the biopsies didn't get to it, or, the primary has already been eradicated by my body and the remnants are in my lymph nodes. I've also read that sometimes the primary is discovered during or just after treatment. 

    Concerning the Cisplatin only. I had a heart attack on October 12th, 2012. Fortunately just very minor damage. I had 3 stents placed. Previously I had a heart attack (again very minor damage) in November of 2007. At that time I had cornary bypass surgery (triple). My chemo oncologist and cardiologist feel Cisplatin only once a week for 7 weeks concurrent with the radiation is the best approach as the "cocktail" would be too much stress on my heart.

    I won't be getting a port unless I need it. I'm rather used to getting stuck with needles so it doesn't phase me. I can always have one placed if need be. Same with a feeding tube. They will monitor my weight carefully and if I start losing too much weight, we'll go that route.  

    Until I'm in the heat of battle I won't know how my body will react. Many have said to have an alternate plan. Can you elaborate on that? 

    Have a great day! 

    "T"

     

     

  • amy_h414
    amy_h414 Member Posts: 98

    you raise an interesting point

    and it is completely valid.  For reasons we don't understand, people can test negative in one part of their cancer, and positive in another.  The OP's cancer presents like an HPV positive malignancy.  No primary.  Large, rapidly enlarging nodes.  Reason to be optimistic.

     

    Pat

    Yup

    This was my husband's case - unknown primary, large nodes in his neck, and two HPV-neg fine needle aspirations before a core biopsy came back HPV positive. I wonder how many people are told they are negative for HPV when if they had further testing a positive result would appear. I guess in the end it doesn't really matter since the treatment is the same either way, but still it was very reassuring to see that positive test. It's such a scary time after diagnosis, I know I was grasping for any sort of positive news.