A lot of people here have had stage 4 and survived.  I don't know what all those statistics mean, but tonsil cancer, stage IV with affected lymph nodes - is quite surviable.  Treatment is tough, but doable, even for us big wimps!

Lorna 2007 & 2014

Chen1911,

Welcome to the H&N forum I am sorry that you are getting off to a bad start.

I believe clinical trials are normally after the “tried and true” methods have been exhausted.  I assume your cancer would have to be very advanced to have your team looking for answers elsewhere.

I was stage IVa, scc, bot, 1 lymph node, hpv+ and currently 100% still here, but if I perused  those statistics as you have I would have seen less optimistic results.

Back to your question, If you ask enough doctors to say “you’re a candidate  for clinical trial” I am sure you will get a taker.

Good luck,

matt

First i'll say welcome and sorry you need to be here. Second I will say it's best not to go and google to much as you will get more wrong info then good info. Just before surgery I was T4;N2;M0 . my tumor was 3 cm x 2.5 cm and laying on my vocal cord. Be cause they thought it had gone to a lymph gland I was T4 and N2. If it involves a lymph gland you often get Stage 4. Long story short. I ended up T3;N0;M0 stage 3, SCC supraglottic. Smoked 550 packs a year for 42 years and a general 5 year survival of 60.6%. Well they removed all of the tumor and 86 lymph glands all clear but done as a percaution. My survival went up to over 70+%. Now I was not HPV, and have a 25% chance of it coming back. That means I have a 75% it wont come back. Of 200 people I worked with only two thought they would ever see me again. I never had chemo or and radiation. I went back to work in 10 weeks and they removed my larynx and I had to learn to swallow and talk but I did and went back to work and have been NED [ no evidence of disease] for 18 months and all the cancer is gone. Oh, I also have stage 3 COPD that is why they took my larnyx, because I would not survive the surgery because of my lungs.

You have very good odds and much better than I had. You just think positive and take one day at a time and KNOW you will beat it. You will beat this as so many of us have. I still have my damn tonsils, go figure. They just sat 5 years but that is only where they stop counting, and we go for many years past that. I'm 64 and feel great and will live for many years, unless a car hits me. You will be fine and get through this. Everyone will help and geve all the support you need.

Bill

As Matt said, more than likely you won't be offered trials unless standard methods aren't producing the expected results.. Especially from your current MD..

If you seek other opinions, I'm sure you might find someone willing to put you in a trial, maybe not.

My question for you... are you more willing to participate in a trail that has not proven to be effective percentage wise, over proven methods...?

I don't think you've offended anyone, you just haven't received the specific answer that you are seeking from here...

Nobody here can give you or is qualified to tell you what is the best medical decision based upon your history.

Statistics are just that.., a large sample of individuals.., each bringing all kinds of backgrounds, locales, genetics, and like you, individual things that influence the results.., and statitistics.

But again, we all do.., you can only try to make the best decisions for you, and trust your MD's..

Your MD is wrong as for his comment on positive thinking... I can not agree on any level... I feel that it can effect your health, your healing, your longevity, and your individual statistics to survive.

Do you really think that having a negative attitude will have no effect on healing, responding to treatment and beating the disease, as one that has a positive attitude...?

I hope you find the answers you are seeking..

I do not fall into the category that you are seeking either though.., I was STGIII HPV+ Tonsils... Clean and clear for over six years now..

Best

John

I will try not to be rude~~my advice to you is to go to a major cancer center in your state. I don't think any highly rated Dr, would encourage you, or support you in your findings,to say you have a certain amount time to live. When I read about my cancer, before, finding this site...statistics showed I had very little chance of surviving...I found CSN and stayed away from google. 3 and 1/2 years later, I am doing great..enjoying my life, eating whatever, babysitting my grandson and always on the go.

You keep saying, "it is what it is", yes, that's true..but, you need a specialist that will encourage you to fight the hard fight.

As for a trial, since there are many people that survived your type cancer, with treatment available..so I doubt if you're going to be offered one. 

Good luck to you, it's a difficult journey, and I sincerely hope you have support along the way

When I was first diagnosed,  I saw the same statistics on cancer.gov. In my case, (Stage 4a, BOT, spread to one node on each side of my neck,  non-smoker, non-drinker, HPV negative) the stats looked grim. Most cases are HPV positive, so there is not a large study pool of those with negative status. People with a negative status also tend to be older which affects outcome. Treatment and prognosis has to be more individualized. I had radiation, no surgery, and cetuximab instead of a platinum based chemo drug. My doctor is very optimistic I'm cured. The treatment is tough, but a positive attitude, supportive people, and prayer do help. We all felt terrified when first hearing the diagnosis. The people on this board were here for me with good advice and support. As far as side effects of therapy, I had acupuncture and found it relieved nausea and sore throat, and preserved my salivary gland function and sense of taste. There have been improvements in the treatment of cancer since many of the reports on the Web were written. Find a doctor who is current and compassionate. You'll do better.

Chen1911 said:

I found the answer.  No

I found the answer.  No promising trials otherwise they would offer them to those like me.  HPV+ patients may see a change in standard treatment because of the research.  I was told (this morning) maybe less radiation and such.  

This is what I was told.  As far as the statistics they are correct.  Not from google.  cancer.gov is very reliable info.  The New England Journal of Medicine article is very very good.  The research says if you are HPV+ and never smoked or below 10 pack years-very very good outcome even if stage 4.  And the same for the other side HPV- Stage 4 10 pack years or more-extremely poor prognosis and no promising treatments trials on the horizon.  Like Yul Brenner said in his commerical "don't smoke just don't smoke."  50% greater chance of reoccurance if you smoked.  100% greater chance of reoccurance if you still smoke after treatment.  I was told complete treatment dont smoke or drink exercise eat right and cross your fingers.  I can accept that.  

I was told that unless one prys is told the overall or general statistic 66% or something like that in reality it is much much better if you are hpv+ and never smoked and much much worse if you are hpv- and smoked.  

Like it or not those are the numbers.  

 Skiffen-positive attitude means nothing in the sense that research does not support it.  I was told otherwise we would be pumped full of mood enhancing meds.  Meditation and such doesnt stop tumor growth.  You cant think your self healthy.  Hypnosis doesnt work either.  Clinically depressed patients will do as well as those who are not provided they complete treatment dont smoke or drink exercise and eat rigtht. 

Had a good discussion this morning.  This cancer is more than likely going to kill me, but maybe not.  (I will jump off a roof if I have to drink another Ensure though).  That is my prognosis.  

 

I can’t give you an advice, as I was/am having a different type of cancer (nasopharyngeal, stage III). But I would like to comment on the positive attitude. It actually matters, but it is very difficult to quantify. Here’s why I am saying it matters: the mood affects your immune system (proven). The immune system affects your cancer growth (proven at least with animal studies). There are currently immunotherapy clinical trials ongoing, but these are highly experimental, and I seriously doubt would be offered as a first line of treatment.