Squamous Cell Paradigm Trial Anyone Have Involvment

Greetings. Glenn here age 45, married , with a daughter age 15.  I was just dignosed with throat, tounge, toncil, neck bi-lateral cancer stage 4A , a week ago today.  Petscan just today to see if it is confined to my neck and head. I am schedualed to meet with a "tumor" board that is at the Boca raton Hospital in Florida.

There is a trial study ongoing since 04 called the Paradigm trial , From the Clinical Research Head and Neck Oncology
Dana-Farber Cancer Center, this trail is expected to consist of 330 patients, since it's onset it has 270 enroled nationaly. This is content information I recieved back in corispondance from the  Dana-Farber folks ::

The Paradigm trial consists of 2 "Arms" ;
Arm A: Induction chemotherapy followed by chemoradiotherapy.  The induction chemo is 3 cycles (each cycle is 3 weeks) of TPF, which stands for Taxotere, Platinum and 5-Fu.  Once the 9 weeks of induction chemotherapy are over, there is a period of evaluation and recovery and then the chemoradiation begins.  There are 2 options for chemoradiation. 
Option #1: 4 weeks of 1x daily radiation combined with 1x weekly chemotherapy (the drug is Docetaxol), followed by 2 weeks of 2x daily radiation
Option #2: 7 weeks of 1x daily radiation in combination with 1x weekly chemo (the drug is Carboplatin)
 
 
Arm B: Upfront chemoradiotherapy
About 3 1/2 weeks of 1x daily radiation followed by about 3 1/2 weeks of 2x daily radiation.  There are two courses of chemo given (the drug is Cisplatin).  The chemo is given on week 1 and week 4.
 
When we give chemotherapy during radiation it is used, not to kill cancer cells on it's own, but to help make cancer cells more susceptible to the radiation.  This is kind of chemotherapy is considered radio-sensitizing. There is probably some good information about that on the web.

Now I would like to know if there is anyone on this board that has been involved in this trial ? I am fact finding in hopes of making a educated decision about a treatment direction .

This is from left field, and I am in the process of digesting I am now a cancer patient.

I have been advised at my stage if I do nothing I have 6 months max to live, any treatment I approch will be agressive as I want to stick around to watch my daughter grow . I have been told of all of the harsh side effects of treatment, they mean nothing to me other then survival. Thanks for any input. Glenn
 

Glenn,

I am so sorry that you have been diagnosed with this cancer. Boy do I know what you mean when you say you want to be there for your daughter. Telling my childern was I think worse than going through the treatment. My children were 19 and 11 at the time.Well when I was diagnosed with Squamous Cell Cancer of the Nasal Cavity & Sinuses we were all in a state of shock especially because I was ony 39 years old.

After having major surgery which lasted 9 hours. I had to have major reconstruction of my nose, eye, & cheek. I recoverd for a month then I was referred to a wonderful radiation oncologist . She sat with my husband & I and told us that this was a very rare cancer because of it's location and she wanted me to meet with one of her collegues at Dana-Farber . So I did . They informed me that I was the 3rd patient that they had seen with this cancer. I was told that the best treatment for me was radiation and chemo. At the time they didn't have a clinical trial for me. They said that the radiation was the primary treatment & the chemo would boost the radiation to make it work better. So at the end of January 06 I started my treatment's back at home in Albany Medical Center. The doctors & Dana-Farber communicated with my doctor's here so I wouldn't have to travel to Boston for treatment's. All My doctor's are wonderful. I couldn't of asked for better care. My treatments consisted of 6 weeks ( 5 day's a week) of radiation and on those Monday's I had my chemo which were Carboplatin & Taxol.

It was truely one of the most difficult times in my life but I got through it with the help of my family & friends. I am 1 year & 5 month's out and they say that I wont really be in remission till I hit my 3 year mark.

I don't like telling people which kind of treatment they should have because that is really a personal thing but I will say that you are in the best hands with Dana-Farber.

I whish you the best and I will keep you & your family in my prayers

God Bless

Cindy

Glen...

You are doing the right thing with researching your options.

I am in Orlando and my husband is going though treatments since June.. ending, we hope, next week.

Surgery was not an option for him initially as the size of the tumor and the tissue that it had invaded made any surgical treatment too invasive and too life altering to consider.  His tumor grew all the way into his mouth from the tonsil.

Radiation affects everyone differently.  Some, like my husband, have sore throat but can continue to still eat and drink.  Find out what they mix in that magical mouthwash and ask for a salve for the neck to alleviate the itching. 

When we got his diagnosis the ENT simply said that he had a 25% chnce of making it to a year IF he did radiation, chemo and surgery..  then he just said "this is bad, my friend" and that was it.  We were able to find a Radioncologist and Oncologist that would treat him and as aggressively as he wanted to fight.

Our treatment has been chemo for the past 9 weeks once a week, almost since the start 2 radiation treatments a day for 5 days a week. 

This man gets up every morning and goes to work (his own business).  I am in hopes that the treatments are successful but we are ready for anything that comes at us. 

 

 

Greetings. I thank you for your replies. It is uplifting to hear of others out there that have been dealing with this cancer. In reading the many messages here I have not found people posting with the medial presentation of the amount of areas involved as I never the less encouraging to hear of the positive results , I am trying to keep a positive mindset , at time the ebs and flows of emotions are overwhelming at this junction. Chin is high though. Results are in on my petscan and it has come back that it is confinded to my head and neck has not spread to my body, this is just one milestone amist all of the negative I have delt with this past week and a mountain ahead to still climb..

 

As for this clinical trial, it seems that the meds are the same as I do further research, it's just a staging of treatment that is differant. as well as this "making the area more sensitive"  My main concern is that if I under go the trial (to be discussed with DR's) I only have one shot at the radiation, I realize that I have only one go at this first main "punch" at this treatment radiation either conventional and or in trial. So discussions with DR's will be at what point do I know if this is working and or can I get back on track with conventional treatment, this I dought and may be on a single path, this is the unknown factor that I need information about to deside if I will take part in the trial. I sincearly thank you for taking time to respond to me.

I will use this thread as a blog of my travels through this journey ahead through my treatment, both for myself and to have a record for anyone in the future that may under go this clinical trial and want a participant responce and information about being sucessful and or not, keeping in mind that not eveyone is the same, but there should be some kind of practical recording of this experance.

 

. If I chose the conventional treatment path I will open a new topic and blog my treatment from begining to end of treatment and progress to share with this comunity and people that may be aflicted with this illness in the future as I feel what I will be going through, mentaly, physicaly may be helpful as a referance to others down the road.

 

Glenn

 

 

Glen...

Regardless of the treatment you choose we need to share our experiences.  As a caretaker I am going through this as well as he is.  What I HATE is when I tell someone he has tonsillar cancer.. they always say the same thing:  "Oh.. he is a smoker".  Like THAT ...  the dismissal. Here no one says anything about that.. we just give name of the cancer, rank or staging and treatments.  No judging..  just empathy.  No matter how badly we feel things are for us we always read about someone else who appears to be worse.  Our Faith in healing is what will bind us.

My husband had his last chemo treatment today (9 total), will have 6 more rad's over the next three days (I lost count at 60) and that will end.

Today the Oncologist brought up surgery, something that would have to be radical and life altering at best.  When we initially discussed our options surgery was not one of them he was willing to discuss and quite frankly was not an option any surgeon would do.

From what I understand Radiation treatment is a one-shot deal.  They can go back and do chemo over and over (like that is a great option) but can only do this aggressive radiation once. 

Consider having the PEG put in soon.  Although my husband did not need it we had scheduled it and were ready to go when we had a conference and decided that he would forego. The loss of saliva is the hardest for most, again something we have to be thankful for (never thought I would be so happy to see my redneck husband SPIT)! 

My husband is now a skeletal version of his old self but he is still HERE..  without treatments he would have had less than a month.  If his time is short now at least he can go forward knowing he took a chance and got the time he needed to do and say the things he needed to the people he cares the most about.

The next two months will be rough but they WIll BE.

My husband was stage 4 at age 60, two years ago. He is doing great now. The traditional standard of treatment is radiation (and or surgery depending on each case) The chemo is the new addition to traditional treatment. My husband had cisplatin....which has been the treatment to ogment the radiation for the past 4 or so years. The chemo especially helps to improve your odds, in case any cancer escaped the radiation treatment area. Cisplatin is hard on kidneys and hearing. However it seems to be successful. JD and many others we know took it 3 times, in the same month as the radiation. (most of his chemo friends also wear hearing aides now). The horizon is now and this is experimenting with the chemo,.... which is good because that is how the treatment imporves.....the radiation, is not being dropped.....which is the necessary part of your treatment. Then the new types of chemo options and or combinations according to the study you will be in. We all appreciate those who can participate in studies as that is how the treatment improves for others in the future. They will not compromise your own recovery as they will give you radiation. I cannot lie, it is hell, but only for about 6 months.....then you start living again! Good luck! I am no help with your choices, I just want to reassure you that all three of the options they are giving you include the radiation. None will be easy and all will have side effects you will have to live with....but the key is you will be lucky enough to get to live with side effects. 5 to 10 years ago, you had a death sentance vs sideeffects that you have now!

Hi Glenn,

I offer you prayers of strength and determination to get through this.

I was treated 1/4/07 - 2/22/07 for a T3-N1-MO tonsillar cancer. The hardest part was determining the type of treatment and where to get treated. I was diagnosed on 11/4/06 and got three opinions by mid december. It was at that time I became aware of a facility right in Miami that offered what I felt fit my needs and type of cancer With all the options presented, confusion or indecision is very common. The standard treatment protocols are changing daily and are affected by the available options at the cancer center you are being treated at. I would highly recommend making sure you are at a site that has the best IMRT radiation delivery machines on the market. Make sure that IGRT is also part of their system. I was treated at MT Sinai on Miami Beach. I went there because they have a Doctor ( Dr. Michael Samuels) who specializes in Head and Neck Cancer, and he has treated over 250 case in the past five years. In addition, they have an IGRT system ( Trilogy) . What the advantage of IGRT is getting higher doses of Radiation to the tumors and surrounding areas while minimizing radiating tissue that you want to protect, like salivary glands etc. Having a doctor that specializes in your type of cancer is as important as having the right treatent options. Do your research, make a commitment to fight this with all your effort, and have faith that you made the decisions. Your attitude will help you as much as the treatments offered. I have a 7 yr. old daughter and a 4 yr. old son, falure wasn't an option as far as I was concerned. I am currently 6 months since my last treatment and am recovering well.  The people here, on this message board helped my family and I find the strength and information to get us where we are today. If I can help in any way please don't hesitate to contact me.

Matt

48 yr old non-smoker 

 

Glen:

I was diagnosed Stage IV Tonsil/Lymphnode.

Treatment was Carboplatin/Taxol once a week for 7 weeks. 30 minutes of radiation 5 days a week for 7 weeks.

I refused a feeding tube and survived on Ensure (strawberry plus only) for months. I lost 60 pounds, but I did bulk up prior to starting treatment.

I wore a 50m morphine patch, took oxycodin & liquid vycodin. Morphine saved me, but is very difficult along with oxycodin to get off of.

You will have a helluva rough time, but will survive it. You have no choice. I have a 13 year old daughter and she is why I founght like hell. If it comes back I`ll fight it again.

My doctor didn`t do the surgery after because he said he wanted to save it in case it came back. We can not take radiation again and if surgery is done afterward as a cleanup surgery(which some doctors do) we can not have the surgery again.

You will need all of our help for the next couple years so ask questions about everything. Now get in your jammies, make a bed on the sofa, get buzzed up on morphine, stock up on Ensure and kick this cancers ass.

I`m 20 months out and I sincerely care.

 Ron in Michigan