IVa HP16 SCC

63 years old. Recently diagnosed with Stage IVa HPV16 Metastatic Squamous Cell Carcinoma, unknown primary (Bob, pick-up on aisle IVa, SCC, heavy on the STD, all checkers to the front! Wink). Radiation and chemo (concurrent), heavy on the chemo (Cisplatin). Possibly feeding tube (nutritionist said eating will become "recreational"). PICC line. Still need to talk to the Radiation Oncologist. No starting date for treatment. Medical Oncologist said the cancer was aggressive. Diabetic for 54 years. Recovering alcoholic and drug addict. Crappy insurance coverage (bankruptcy may be part of my financial future).

  1. PICC line or port? Doctor says in her record she wants PICC line (only talked with her once as yet). Scheduled for next Friday. If I choose a port I have to cancel the appt. and wait even longer to get treatments started. Will it even matter which?
  2. How are some of you able to go to these great and prestigious cancer treatment centers? I'll get my treatment at ****'s Diner and Treatment Center! Both my oncologists are part of the only medical and radiation oncologists within 100 miles. The well known tratment center is 300 miles north. Traveling daily for radiation is not financially or logistically possible.
  3. Do I need another opinion? I actually trust my ENT and the others, but I've never had STUPID CANCER before. Seeing another group of doctors will put us further in the financial toilet. I am willing, I think.
  4. Anybody with Type 1 diabetes gone through this? I'm specifically worried about my kidneys, which are not failing, but are in the middle between 1 (no problems) and 5 (dialysis).
  5. Alternative supplements/diets/treatments? I have some spiritual things I will be doing. I did find an old diet plan that had quite a few coffee enemas per day along with eating some of the most outrageous foods I've ever heard of.  I'm willing to change my diet completely, exercise, pray, meditate, ring bells and possibly twerk, if you think that might help. No enemas though.

I have read many of your success stories and they inspire me. I consider you Elders who have the wisdom and experience to help.  I thank you for that, in advance. I am staying positive and resolute so far, except the financial stuff. But I am working on that.

Life is good today. Just for today. By the way, need to laugh a lot.

 

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    welcome

    OregonSCC,

    Welcome to the H&N forum fellow Oregonian, so sorry you picked up on aisle IVa, scc, hpv+. 

    I traveled a similar path but only had to drive 11 miles to Corvallis for treatment. 

    I was trying to think what was the most recreational about treatment and I guess I’d have to say the radiation treatments, watching the machine move around me.  I never liked it but came to appreciate it.  While each of us have different side effects’, eating has been described on here in many ways but never as recreational.   Eating after radiation is something you have to develop a taste for.

    I had a PICC line, it worked okay but itched like nobody’s business.

    I  had a PEG tube (twice) but in hindsight could have done without.

    A second opinion is often a good thing but the outcome is probably the same treatment plan.

    It is kind of too late for supplements to help, now is the time to consume calories, that is if you follow the normal plan and lose about 50 pounds from treatment,  Good nutrition is important too.

    Laughing with you,

    Matt

  • meaganb
    meaganb Member Posts: 244 Member
    When diagnosed I lived in

    When diagnosed I lived in Columbia SC. I had treatment at an oncology practice there so while not small, certainly not prestigious. I felt like the care I received was excellent & it was in line with what any other oncologist would have done. If you feel like you need to get a second opinion or end up traveling for treatment look into financial aid from the ACS. I have heard of them providing assistance for travel, boarding, etc. Good luck with treatment, sorry you have to go through this.

  • MrsBD
    MrsBD Member Posts: 615 Member
    Welcome

    Welcome to the club. 

    1. I had a port. It was not bothersome at all and a great way to have blood draws and extra fluids as well as chemo and contrast dyes for scans.

    2. My treatment was at a smaller cancer center. Just make sure your doctors are using current protocols and able to offer them to you. 

    3. It sounds like your doctors are using a team approach which is good. Many insurance companies let you get a second opinion. It can't hurt.

    4. I am a Type 2 diabetic in Stage 3 kidney failure. My docs used kinder-to-kidneys contrast for scans and Erbitux rather than a platinum-based chemo drug. You'll need to closely monitor your sugars if a steroid is part of the chemo delivery. Good hydration is important for your kidneys, too.

    5. Eat a balanced diet for as long as you can. I did not have a feeding tube but lost 40 lbs. As you need advice, people on this site will give you ideas on food  preparation and how to deal with treatment side effects. 

    Check with your hospital and insurance company about financial help too. We'll all be here to get you to the other side where you will meet our friend NED. (No Evidence of Disease )

     

  • yensid683
    yensid683 Member Posts: 349
    similar path

    as you, stage IVa, SCC, HPV16+  but with a known primary.

    I had a combined treatment regimen, induction chemo, then radiation with erbitux and then a selective neck dissection.

    I only had one of the three scheduled induction sessions as i wound up with a renal failure problem from the cocktail (taxotere, cisplatin and 3 days of 5FU), I had a power port and it does make infusion easier - no digging for a vein - though it did cause me a problem after treatments ended as it caused a blood clot in my right jugular vein.  if you opt for a port, be aware that there can be a clot risk (only 4% though - lucky me)

    I would recommend a feeding tube as well, my oncologists told me that before they started using these, most head and neck fatalities were because the patient starved to death.  I had one and resisted using it for about 2 weeks worth of treatments and then swallowing became an 'adventure'.  Get the tube, it will make a difference, pain in the *** though it may be.

    I didn't go to a signature cancer center, but did check out the credentials of the hospital and practice I did go to (St. Peter's Cancer Center, Albany NY) and they did a good job.

    I was diagnosed in March of 2012, the primary tumor was on the base of my tongue and measured 30mm, the largest of the lymph nodes in the left side of my neck measured 60mm, and I recently celebrated my 3 year end of treaments and continue to be NED (no evidence of disease)

    you have a complication with the diabetes so diet will be important for you, I'd recommend the PEG tube, trust your ENT and oncologists, mine weren't "name" center people but they were competent, and stay away from the alternative treatments, they sound attractive but are are usually disappointing, it is your decision to make.

    good luck and as everyone else has said, welcome to the family no one wants to be part of.

    Peter

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

    that nobody wants to join.  I can tell you that having a sense of humor helps a lot with this diagnosis and treatment, and you have that in spades....GOOD!!!

    I had a port....so I'd want to ask how long will getting one delay treatment?  2 days?  A week?  I can't imagine it would be longer than that, and therefore wouldn't make any difference.  If they say 2 months, somebody's pulling your leg.  The port was great, no hassle, no fuss no muss for showers, or blood draws, or getting chemo.  I did have a tube....and wouldn't have made it without....I was skinny to start, and skinnier at the end, but only lost 20 lbs all told. 

    I went to the Medical Center right here in Kalispell, Mt.  It's small compared to places like Seattle, or MD Anderson....but my treatment was the same as it would have been elsewhere.  I'm 3 years out and none the worse for wear, considering.  They used the team approach here, just like the big centers.....ENT, Oncologist, and Radiologist....all working together.  A second opinion is a good thing to have, tho.  A one time trip to Seattle wouldn't offset your treatment much.  If they have a different approach, your Oncologist in your own town might be willing to follow it.

    The above I'm thinking because of your kidneys....Cisplatin can be hard on them, where Erbitux would not be.  I got a drug daily that was supposed to protect my saliva glands from radiation, but it also protects the kidneys (Amifostine).....ask about it.  Walking in with knowledge lets them know you are up on the alternatives out there....that everything doesn't have to be cookie cutter.  Just ask...."what about Erbitux because of my kidneys?".....see what they say.

    This group is great....the knowledge, support, and humor found here, will get you through this rough patch of life....we know tips and tricks to make this more doable.....more tips and tricks than the Drs. know (having never been through the treatment they dole out)....We'll tuck you in our pockets and help you through this!

    p

  • wmc
    wmc Member Posts: 1,804
    Welcome to the H&N Group

    Welcome Bob to the group. As of now you are not alone in this journey you are going on. It is a rough road you are about to go down, but many before you have been down it and will smooth it out the best we can. As for me I was T4; N2; M0 going into surgery but once they were in, it was reduced to T3; N0;M0. I didn't have chemo or Radiation so the others will help you with that part. They removed my larynx and did a neck dissection on both sides, removing 86 lymph glands.

    Having a second opinon is alwasy good to have and If you need to go to the hospital 300 miles away they can make arangments for you to stay their at very reduced, and even no charge at times to be treated. If you want to stay local they can get with them and let them know what is to be done and where the radiation is to be. Stay hydrated and expect to lose weight so you might want to pack on some calories.

    Bill Oct 2013

  • ratface
    ratface Member Posts: 1,337 Member
    wmc said:

    Welcome to the H&N Group

    Welcome Bob to the group. As of now you are not alone in this journey you are going on. It is a rough road you are about to go down, but many before you have been down it and will smooth it out the best we can. As for me I was T4; N2; M0 going into surgery but once they were in, it was reduced to T3; N0;M0. I didn't have chemo or Radiation so the others will help you with that part. They removed my larynx and did a neck dissection on both sides, removing 86 lymph glands.

    Having a second opinon is alwasy good to have and If you need to go to the hospital 300 miles away they can make arangments for you to stay their at very reduced, and even no charge at times to be treated. If you want to stay local they can get with them and let them know what is to be done and where the radiation is to be. Stay hydrated and expect to lose weight so you might want to pack on some calories.

    Bill Oct 2013

    Sounds like world class treatment

    Hi Oregonian

    You really sound like you are making good sound decisions and wanting to be educated. Sorry about the diagnosis. Welcome to the Board. I had to go look up what a PICC was. I had a PORT.  I don't think it would matter much if it can deliver appx the same flow rate for chemo. It sounds like it's even less prone to infection. Other than chemo most nurses avoided it because they didn't know how to access it. I suppose it's an uncommon device. There are contact points under the skin that need to line up with the port thingy. Anyway I doubt it matters much. I wouldn't change much. I was treated at a local rinky dink hospital for chemo and radiaition. My local GP was on staff there. The  radiation machine would break down almost weekly and there was usually a computer tech guy  hanging in the hallway in case it went down. I had the two most knowlegable rad and chemo doctors as well as a staff dentist experrienced in head and neck cancer. Some of the most caring people I have ever met and fifteen minutes from my front door.  All this stuff is flow charted and standardized. Chemo is easy to order and adminisiter anywhere. The radiation is mapped from your CT/scan/PET and the dosages regulated by frequency and intensity. We all generally get between 35-40 sesssions at about 70 grey. You get treated first and worry about payment later.  You are not missing a thing by staying local as long as they follow protocol, meaning tumor board recommendations. If you need specialized surgery then it's OK to move to the best capaple facility. There are countless threads here about feeding tubes and no feeding tubes and individual experiences. Someone has already mentioned starvation, it's a fact with 1/3 of all cancer patients dying of malnutrition. That again is all cancers combined and not just us. The general plan is to consume  massive amounts of caloreis now as you will lose weight. There are medical grade supplements available for every need. Seems to me you have been lucky enough to come accross a competent little treatment facility. They exist , go for it! All the best.

  • Oregonian_squamous
    Oregonian_squamous Member Posts: 5
    Thank you for all your

    Thank you for all your comments and suggestions. I will look into them and ask lots of questions. When my treatments start I will probably lean on you heavily.

    The great thing is that my wife and I have been through another serious medical issue for her. I know she and others will be willing to help. A friend of mine said I should put together a team of people who may be able to help with various chores during treatments: transportation, food if needed, outside and inside the house things, financial counseling, etc. I thought it was a good suggestion.

    By the way, does chemo make you emotionally crazy? While I'm doing pretty well today, I am a pain wuss (Honey, I've got a serious hang nail and it looks like it might bleed. Gonna have to stay home from work today). I may whine a bit. I know I'll get tired but I'm already a nap fool.

    With the radiation I have read that it could effect (affect?) my throat, temporarily and/or permanently. Please tell me it will be temporary. I play guitar and have a fairly pleasing voice  for an old man.

    I know this may/will be trying, but I also know this will be an opportunity to grow as a loving person (My sponsor said that was his purpose in life. That was what I needed and now strive for.)

    Life is good today.

  • phrannie51
    phrannie51 Member Posts: 4,716

    Thank you for all your

    Thank you for all your comments and suggestions. I will look into them and ask lots of questions. When my treatments start I will probably lean on you heavily.

    The great thing is that my wife and I have been through another serious medical issue for her. I know she and others will be willing to help. A friend of mine said I should put together a team of people who may be able to help with various chores during treatments: transportation, food if needed, outside and inside the house things, financial counseling, etc. I thought it was a good suggestion.

    By the way, does chemo make you emotionally crazy? While I'm doing pretty well today, I am a pain wuss (Honey, I've got a serious hang nail and it looks like it might bleed. Gonna have to stay home from work today). I may whine a bit. I know I'll get tired but I'm already a nap fool.

    With the radiation I have read that it could effect (affect?) my throat, temporarily and/or permanently. Please tell me it will be temporary. I play guitar and have a fairly pleasing voice  for an old man.

    I know this may/will be trying, but I also know this will be an opportunity to grow as a loving person (My sponsor said that was his purpose in life. That was what I needed and now strive for.)

    Life is good today.

    No...chemo doesn't make you

    emtionally crazy, unless a person is looking for a reason to be...then it's a good excuse....LOL.  Chemo can make you nauseated, weak, sleepy, tired....drugs for the nauseated, rest helps the other stuff.  It is a good idea to have helpful hands on deck.  I had my husband and my sisters.....hubby drove me to and from chemo and rads, did the lawn work, and took care of dogs and horses.....sisters did all the cooking for my husband, and made things I could eat/taste.....mostly homemade soups.....it was a godsend.

    As for your voice....there are several musician/singers on here.....their voices changed a little, but they seem satisfied with the outcomes.....yours will too!!!

    Adversity makes us grow....if you have a sponser, then you know that's probably true....Pain is the touchstone to change (or so my sponser has told me Smile)....that seems to be true so far!  I am different now, than I was pre-cancer....some days it's good, and I remember one day at a time....sometimes I take up my old habit of peering off into the future....that makes for a stinky day.

    p

     

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    welcome to our family, so

    welcome to our family, so sorry you needed to find us.  as for your treatments, if you'd like to go someplace farther from home, you can contact the ACS as they have facilities in some areas where patients receving tx can stay for free.  Their number is:  800-227-2345.  They can also answer any questions you may have and let you know what services are available in your area to help you as you  take this journey.  They also have volunteer drivers to take you to tx should you find you cannot drive yourself or don't have transportation.

    I also had my rad tx at a very small place.  I did not even know big places existed.  I wish I'd had know about this site before I went through tx because I would have been a lot more prepared and known more about options.  You've found a good place to be and we will all be here for you as you go.  put on your battle gear and be prepared to fight hard.  We will celebrate with you when you cross the finish line!!

    God bless you,

    dj

  • Begin treatments soon

    Should begin treatments next week. Had PICC line and PEG tube installed (sound like a mechanic did it). The PEG tube was a bit (lot) painfull for a couple of days but doing well so far. Will be getting cisplatin in a hospital setting. Radiation treatments are at the same hospital.

    Doctors weren't communicating well and the infusion services nurses went to bat for me. They were great and got everything moving. I know I'm in good hands.

    A bit reticent to start treatments because I don't know how my body will respond/react. Think I'll wonder about that next week and stay in the now.

    Keep good thoughts and prayers.  I know I will.

    Life is good today Thanks.

  • wmc
    wmc Member Posts: 1,804
    Welcome to the H&N Group

    Welcome, but sorry you need to be here. I only had surgery [due to other complacations] no chemp or radiation, so others will answer those questions with first hand knowledge. My knowledge is from them as well. I was first thought T4; N2; M0; but after surgery and a neck dissection on both sides and removing my larynx, it was reduced to T3; N0; M0. I had good insurance and I went to a major center, Stanford Medical 215 miles away. Yes it was worth it as no one local really does do this. The ones that do, I have seen their work, so I travled. None of them came out as good as I did. Some have sholder problems and some disfigeration because nerves got cut. I was cut from ear to ear and don't have the problems they had. I also was first seen by "he best" oncoligest around and he ruled out cancer 9 months before I had surgery for a tumor 3cc x 2.5 cc, he was wrong and if it was found that much earlier I might still have my voice box. I also know one where they burned her too much with radiation and she was rushed to Stanford to save her. 

    Call the major center and ask if they have any assitance. We got an apartment across the street from Stanford at a very reduced rate and it was fully furnished so my wife and son stayed there while I was in the hospital.

    I always recomend a second opnion. Now for your good news....HPV+ respondes beter to treatment that not having HPV. Now this type of cancer does respond very well to treatment and has a very good cure rate. It is also the second hardest treatment you can go through. Drink lots of water, stay hydrated, Never Give Up, and get an attitude that you will beat this, as you will do, but attitude helps. Just take one day at a time and on the really bad ones, you go hour by hour.

    Bill

  • Post treatment

    Well, this has been a wild ride.  My treatment ended 4 weeks ago.  I had 7 weeks of radiation and 3 cycles of cisplatin.  During this treatment I had a blood clot in my leg, a mild heart attack, the discovery of a previous heart attack and a few bouts of dehydration. I lost my taste after about 4 weeks and have been using the feeding tube since that time.  Haven't lost very much weight, about 10-15 pounds.  My doctors had no clue regarding how to control my Type 1 diabetes and thia has caused a lot of problems for me.

    After my last chemo treatment I have been nauseous every day and none of the medications are helping.  This is very frustrating for me.  My medical oncologist says the nausea will soon end.  I hope so.  I have to wait unitl the end of December to get another PET scan.

    I am tired, both physically and emotionally.  The only thing I know today is that I am alive.  It is enough for today.

     

  • Barbaraek
    Barbaraek Member Posts: 626

    Post treatment

    Well, this has been a wild ride.  My treatment ended 4 weeks ago.  I had 7 weeks of radiation and 3 cycles of cisplatin.  During this treatment I had a blood clot in my leg, a mild heart attack, the discovery of a previous heart attack and a few bouts of dehydration. I lost my taste after about 4 weeks and have been using the feeding tube since that time.  Haven't lost very much weight, about 10-15 pounds.  My doctors had no clue regarding how to control my Type 1 diabetes and thia has caused a lot of problems for me.

    After my last chemo treatment I have been nauseous every day and none of the medications are helping.  This is very frustrating for me.  My medical oncologist says the nausea will soon end.  I hope so.  I have to wait unitl the end of December to get another PET scan.

    I am tired, both physically and emotionally.  The only thing I know today is that I am alive.  It is enough for today.

     

    Holy Moly Oregonian!

    I'm sure you feel like enough is enough already! I'm sorry your treatment has been so crazy with complications. There are lots of nausea medications...I hope your doctor finds the right combination for you. For us, Emend was the best after chemo, but everyone is different. It's good you haven't lost too, too much weight. Hopefully now that treatment is finished you will be on the upswing! You did it...you finished treatment (balloons should be falling right about now), so congrats!

    It's also hard to wait a long time to get that PET, but better to wait and get a good result than a false positive. I'll be praying for a good result for you.

    Barbara

  • Barbaraek said:

    Holy Moly Oregonian!

    I'm sure you feel like enough is enough already! I'm sorry your treatment has been so crazy with complications. There are lots of nausea medications...I hope your doctor finds the right combination for you. For us, Emend was the best after chemo, but everyone is different. It's good you haven't lost too, too much weight. Hopefully now that treatment is finished you will be on the upswing! You did it...you finished treatment (balloons should be falling right about now), so congrats!

    It's also hard to wait a long time to get that PET, but better to wait and get a good result than a false positive. I'll be praying for a good result for you.

    Barbara

    Thanks

    Luckily this week has been much better. The nausea is much less than it has been. I was able to go back to work part time. I wrote the post when I was pretty low. Doing much better now and I think I saw a balloon. Thanks for the prayers.

    Mike

  • Barbaraek
    Barbaraek Member Posts: 626

    Thanks

    Luckily this week has been much better. The nausea is much less than it has been. I was able to go back to work part time. I wrote the post when I was pretty low. Doing much better now and I think I saw a balloon. Thanks for the prayers.

    Mike

    Whoop Whoop!

    Glad you are feeling better :) Come here anytime for support and encouragement. This group is pretty special.

     

    Barb

  • phrannie51
    phrannie51 Member Posts: 4,716

    Thanks

    Luckily this week has been much better. The nausea is much less than it has been. I was able to go back to work part time. I wrote the post when I was pretty low. Doing much better now and I think I saw a balloon. Thanks for the prayers.

    Mike

    Good deal!!

    Glad to hear you've gotten back to work....it gets better every month and that's a fact (slow I know, but better, none the less).

    p

  • sammydiego
    sammydiego Member Posts: 5
    stage lV,T N2c Mo p16,right base of tongue

    Glad to see your getting better!Just today read your comments.Losing the taste buds was hard for me and am now 11 mts out from when I first found out too 4mts clear. Still working on taste,things still not there but a whole lot better.This site really helped me a lot and all good info and people! I try and check this site as often as I can if you have a question or such feel free to sent an email my way.All the best to you on this journey. Sam