Clinical Study-- I need your help and support -please

I'm not sure I can really have any input, as I only has surgery and no radiation or chemo. I do understand the fear of asperating as I had what is called silent asperation. I never knew I was as I never choked on anything as most will. I just coughed later, hours sometimes and then I knew I was. My lungs were bad so this was my only option, to remove my larynx and do a neck dissection on both sides as a precaution.

I do have one concern though. When a doctor tells you are HPV+ but never tested for it. Sorry, but that really bothers me. Now you wern't a smoker and I would guess not a heavy drinker, so he assumes it must be HPV+?  Now it might be. There are some who get this type of cancer due to Acid reflux and LPR is like GURD, just the "L" means Larynx. Some on here have goten it, for no known reason, but wern't HPV+. Those who are HPV+ do respond better to the treatment, and yey most are done the same. Some doctors do go lower dose and just add more treatments. I have noticed and also with research, found that those that were HPV+ do respond better, but it also returns so much more often. 

Sloan Kettering is one of the best there is and they do have great doctors. I would want to be tested for HPV. Just me, for peace of mind. Some things seem to just get stuck way back in the mind and just keep poping up to think about or question.  The reason I say this, is it is what I am going through. I was just befor surgery, T4; N2; M0; but when it was over, after being cut from ear to ear, T3; N0; M0 stage 3 Supraglottic. Not from what I got from doctors and many hours of research I knew my "Odds" were 63% then I could add some because it was contained and never spread, and add a little more because they got it all, and everythind around it too. So I guessed better than 75% to 80% were my odds. Now I didn't really pay much to that as I knew I would be fine and go back to work in 10 weeks and had to learn how to eat and speak. I did all that and did go back and much of my job required talking. No we had 250 people at work and only two though I would ever make it. My Son and Brother, Father in law all thought it was over for me. I beat all the odds. Now I read a new report from the American Cancer Society, and for exactly what I had, Supraglottic T3 is now only 53% to make five years. That just sticks in my head.  The only thing we all have in commonis we all got cancer, that it. We have other conditions that effect our treatment, our overall health, different doctors. You just take one day at a time. 

You said you thought your brother was so strong, and you don't see yourself that strong. I don't agree, you not only are, you wanted to take his pain if you could. I understand this more than you will ever know. I did the same with my father. I prayed to take me and just give him five or ten more years. He had lung cancer and was given 6 months. He lived six years, and we were lucky as we got to say everything that needed to be and I got 5 wonderful years, the 6th was really hard on him. He went into the hospital in the middle of a week, and I got a call to let me know. I also was asked, not to come, as he would know how bad he was. He didn't make it, and I wasn't their. My Father got cancer at 66, I got mine at 63. He was given 6 months, but got 6 years. Did my prayers get answered? I prayed to take his place. I don't know if they were, but he did get 6 years. I believe your love gave your brother the strength to fight like he did. I know my brother said the way I fought mine gave him strength to deal with some of his health problems.

All that I can really offer is support and an ear when needed. You can beat this and so many here have. Just never give up, and just one day at a time. Try to be at peace, I know it helped me. I always knew I would get through it and never really had doubt, but I was at peace if I didn't.  My doctor and SLP [Speach and the one who changes the prosthesis in my neck to talk] have told me I have done things they said could not be done, like whistle. I though that if I can get air to talk I should be able to whistle, and did. That took two months and working everyday and just about all day too. They even had me make YouTube videos so they can show others what you can do if you don't give up and just try.

You will be in my thoughts and prayers. 

Bill   Oct 2013

Neil51,

Welcome to the H&N forum, where choices abound.

It is my opinion that you should treat your cancer aggressively, as is general standard practice, because it has the greatest success rate.  The time to go soft on treatment has past, yours sounds too far advanced.  Even HPV derived cancer can spread given time to grow.

I am extremely sorry about your brother; you can imagine what no treatment would foretell for you.

Treatment is hard, but doable!

I would listen to your team and go for the gold, anything less may be a mistake.

Good luck,

Matt

I wish you all the best in your treatment. In the end we all have to make our own decisions based on the circumstances we are confronted with, in combination with our own personal strengths and weaknesses.

My husband had a nasopharyngeal tumor - stage 4. He is a surgical oncologist working at a National Comprehensive Cancer Center. He went with the recommendations of his team which included 35 intensity modulated radiation sessions, and 2 concurrent chemotherapy sessins with 100 mcg Cisplatin. Were there side effects? you betcha. He now wears hearing aids having lost hearing bilaterally, he has not one drop of saliva, very little ability to taste, fatigue, swallowing issues (we are weaning off the PEG tube), and neck stiffness. AND HE WOULD DO IT ALL AGAIN THE SAME WAY to hear the words "Complete response, no evidence of disease" like we heard on October 15, 2015. 

Do we want our "old" lives back the way they were before the diagnosis and treatment? God, yes. But that's not an option...so we work everyday at adjusting to our new normal and making the most of each day - regarding it as icing on the cake in spite of the side effects that linger.

As a cancer surgeon, he has to talk with patients all the time about quality of life issues - and that is different for each individual. It sounds like you made a decision based on what you felt you could handle - physically and emotionally. Keep us posted...you're part of the H&N "family" here now, and you'll be in my prayers.

Barbara

Neil

I was part of a clinical trial at the University of Chicago. There were two parts they were doing a study on Erbitux. My part of the study consisted of 8 weeks of induction chemo with taxol, carboplatin and erbitux, I dont remember the doses. then after induction I drew the inpatient leg of the study. During this time I was to have 5 alternating(1 week on & 1 week off) weeks of twice daily radiation, 120 hours of 5FU daily hydroxyurea and weekly ebitux. Due to all the side effects etc. I beleive I was home only a total of maybe 6 days out of the ten weeks. Due to the Universities protocols I received 7 transfusions due to my low blood counts. I forgot what the second leg was sorry, I believe it was daily radiation with weekly cisplatin not sure though.

As I was an unknown primary, I had to have both sides radiated which left second degrees burns on most of my neck, after treatment my wife took care of those with a mixture of neosporin and I forget the name of the moistureizer the hospital gave us. This also helped a little with the Erbitux rash I developed.

As i wanted the peg tube removed my wife started me on the soft foods like you stated, and I lived on ensure, I still lost 65 pounds from treatment. It took me 6 months after treatment to get back to work

I was also HPV+ and stage IVa SCC with the unknown primary, I am six years post  Hope this helps

Wished & Prayers

Dave

My husband was diagnosed with Stage 3 laryngeal cancer in July of 2010.  There was no spread and the only reason he was Stage 3 was due to the size of the tumor.  We were told upfront that treatment for head and neck cancer was one of the worse there is.   He underwent 7 weeks of radiation along with chemo.  We were told he was clear after treatment but within a month he was having trouble breathing and they did another biopsy and inserted a trach.  Well the radiation/chemo didn't get the cancer and so he underwent a total laryngectomy and reconstruction of his throat due to the radiation.  He was fine for a year when our head and neck specialist found a tumor at the cervical of his esophagus, which is a rare spot.  He ruled out surgery due to the radiation and previous surgery and since the tumor was small and once again no spread, he recommended another 7 weeks of radiation with chemo.  Needless to say this didn't stop the cancer from returning and spreading.  He lost his battle last year.

The specialist always said that it was a second primary that occurred at the cervical of his esophagus and I have always wondered if the first radiation treatments didn't cause the second primary.  I only wish that we had been referred to the head and neck specialist at the very first  but hindsight is just that.  Now my husband was a pipe smoker and had been for over 40 years and he was a beer drinker which he had stopped 8 years before being diagnosed.  And of course, these habits we were told caused his cancer.  I don't know about that because I know several people who have survived and died from cancer and were not drinkers or smokers.

Wishing you peace and comfort.