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This was in Tuesdays Detroit Free Press. The doctor in this is Dan's Oncologist. I thought it great that it was in our paper. This is the first time I have ever seen anything related to Oral Cancer printed in the Detroit area.

"Patients with advanced head and neck cancers do better if chemotherapy is added to the radiation and surgery they now receive, two new studies suggest. The findings shuld change the standard of care for people with such high risk tumors, said Dr John Ensley, pare of a team that piloted the combination treatment in the 1980's at Barbara Ann Karmanos cancer Institute and its affiliate Wayne State University School of Medicine.
It has also become the accepted treatment for several other types of cancers, including nasopharyngeal tumors in the region that connects the mouth and nose to the esophagus.
The regimen gives 6-8 weeks of radiation treatmens and high doses of chemotherapy on the first, 22nd, and 43rd days of radiation.
This particular regimen has hit a home run every time said Ensley, head of oncology for the Karmanos head andneck cancer team.
It comes at a cost. Complications included four deaths about 2 percent of patients in one study. One in four had side effets, including mouth sores and stomach problems. About 5 percent had such severe mouth sores that they will need feeding tubes for a lifetime. (Dan got treatment for his mouth sores and was fine) The research was reported in the May 6th issue of the New England Journal of Medicine.
Head and neck cancers include tumors of the tongue, mouth,nose and throat. They are the 6th most common type of cancer worldwide. About 37,000 cases are diagnosed in the United States each year.
They are among the more difficult to eradicate. They often recur despite surgery and radiation and kill more than half the patients diagnosed with them within 5 years said Dr.Bruce campbell a Milwaukee doctor who helped conduct one of the studies.
The new research involves advanced squamous cell tumors, which originate in cells lining structures in the head and neck and often spread to nearby lymph nodes. Smoking and other tocacco use accounts for 85 percent of the cases.
One study involved more than 400 AMerican patients, half of whom got radiation and the others radiation plus the drug "cisplatin" between 1995-2000. After 2 years 82 percent of those who got chemo had their cancer controlled, compared to 72 percent who got radiation alone.
There was no difference in overall survival perhaps researchers say, because of high rates of deather from other diseases related to smoking and alcohol ue, also common among people with head and neck tumors.
The second study found chemotherapy improved survival. It was done in Europe and involved more than 300 patients.
Five year survial was 53 percent in those who got chmeotherapy and 40 percent for those who got radiation alone.
Ensley and others expect that the longer studies are conducted more survival benefit will be apparent.


Sherrie wife to Dan, Tonsil cancer survivor, Stage IV diagnosed July/2001
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Sorry about the typos, I have RA and have a hard time typing, but I should have been better with re-reading my errors!!


Sherrie wife to Dan, Tonsil cancer survivor, Stage IV diagnosed July/2001
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Sherrie Lynn,
Thanks so much for the information. It's helpful to know that hopefully the chemo will add to the success of some of our treatments!
God Bless,
Debbie


Debbie - Caregiver for husband, Dan, diagnosed with tongue cancer 7/03. Partial gloss., mod. neck dissections, graft. Recurrence neck tumor 12/03. Radical left neck dissection 12/24/03-unable to get all the tumor. 8 weeks chemo/rad beginning 1/12/04.
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Sherrie,

Thanks for the article. It sure put a little pep in my step to know I had this treatment plus a few extra weeks of radiation.

Ed


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
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Sherrie,
Thank you for taking the time to type all this . It must have been painful for you with the RA.
My husband also received this protocol , he is doing absolutely wonderful.
This has given us an extra little bit of hope.
Cheers
Marica


Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
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Thanks for the info but the % indicated can vary depending on the area of cancer. These appear to be general % but will vary by type.


SCC R-Tonsil T2 NO MO Dec 2003. Completed IMRT Radiation only to tonsils(72Gy) and neck(55Gy)March 04. Detected at age 50.
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Sherrie Lynn,

Great stuff. Wonderful. Glad to hear that the medical community is publishing this in local papers.

I wish I could shout it from the roof tops.

I talk to so many people that still receive surgurey and radiation alone.

Why cant the medical profession as a whole agree that this is the benchmark protocol to this point?
Arent they all on the same team?

Just my two cents.

Thanks,
Robert


SCC 1.6cm Right Tonsil 10/3/03, 1 Node 3cm, T1N2AM0, Tonsil Removed, Selective Neck Disection, 4 Wks Induction Chemo (Taxol,Cisplatin), 8 Weeks Chemo/Radiation (5FU,Hydroxyurea,Iressa), IMRT x 40, Treatment Complete 2/13/04.
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This is a definite improvement in the numbers since the last study which put the benefit of chemo at only 6% (combined with radiation) or so (the chemo they are talking about is Cisplatin).

The studies were originally printed in the New England Journal of Medicine.

I forwarded transcripts of the original report to Brian last week.


Gary Allsebrook
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Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
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Gary,

All the good news about using chemo along with and during radiation makes me wonder why it was never mentioned to me. I made my decision in July to have the surgery followed by radiation based on what my ENT and the tumor board suggested. Chemo was never mentioned. It's easy to look back and say I should have done this,or that. Even though I was a stage 4, tonsil tumor without node involement. After having a 15 hour surgery and the resulting quality of life issues I do wonder about my decision. You did so well without surgery it makes me wonder. I'm sure your quality of life issues pale compared to those who had major surgery.
Each swallow is a thought out process, each drink of milk is done over a towel. It takes me 45 minutes to eat what I used to eat in 15. My choices of food are based on if I can eat it and how long will it take, I'm having my second Pet/Cat scan next Wed the 19th. I am dreading the results. I almost feel like cancelling it and only go back if I think "It's Back".

I like hearing about survival improvements however I don't feel it will effect my odds.

Dan


Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.

Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06

Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
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My team decided against chemo. They said my one lymphnode was contained and that the chemo would be to take care of any distant mets which they didn't feel I had. Also that my tumor was well-differentiated and would respond well to radiation. Not sure if I'm saying this correctly. I do know that if I were NOT having surgery that I would want the chemo. I trusted the choice my doctors made at the time and still do.


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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Dan, I truly understand how you feel not having chemo as part of the treatment. We all want the best treatment that leads to the best result with the least side effect.Are we asking too much? If all our hopes can come true, cancer will not be so terrible. I also feel upset for a while knowing that IMRT can be a better type of treatment but I was never told by my oncologist about this option.If I had known it earlier, I could have gone for it regardless of the cost. Should I blame the doctor who saved my life? NO! You are worried that without chemo, your chance of recurrence is higher but without surgery, it is also natural for me to think that I have a high risk of getting recurrence since statistics also state that surgery is an effective treatment to Head and Neck Cancer.Compared with those who are defeated at this battle like Heather, Packer , Marcy and many more, we should feel much grateful that we are still alive. There is always hope as long as we are here.We need to face the reality and don't get trapped in something that is irreversible.Statistics are nothing but figures; attitude is everything! Dan, stop worrying!

Karen.


Karen stage 4B (T3N3M0)tonsil cancer diagnosed in 9/2001.Concurrent chemo-radiation treatment ( XRT x 48 /Cisplatin x 4) ended in 12/01. Have been in remission ever since.
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Dan, my team decided against chemo, too. I had tongue cancer and two cancerous lymph nodes in neck. After surgery, I had 7 weeks of radiation because of the two lymph nodes involved. My doctors told my husband chemo would not work in my situation. Try not to worry, take one day at a time.....I know, I know, much easier said than done....but I do believe the right decision was made by my doctors....Carol


Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
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Funny, when I was treated, less than two years ago and my team of doctors at M.D. Anderson decided on chemo and radiation, ( which was part of a study ) my insurance company at first tried to claim that chemo for head and neck cancer was "experimental". I actually had to fight with the insurance company to convince them to cover the cisplatin and taxotere. Eventually they relented. From what I can tell it is almost a standard protocol. I never heard of IMRT, by the way, until I found OCF. My doctors never offered it as an option.

Danny G.


Stage IV Base of Tongue SCC
Diagnosed July 1, 2002, chemo and radiation treatments completed beginning of Sept/02.
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I should clarify that chemo is indeed not very effective in head and neck cancer but Cisplatin is an aylkylating agent that enhances oxygenation of the tissues, thereby rendering the radiation more effective. So there is a seed of truth that chemo us not very effective, just the type of chemo designed to attack the cancer cells themselves (this, of course, subject to change). When I was told of the choice for chemo or not, the data at the time only suggested a small percentage of benefit, contrasted with the risks. I went with it because, at the time, a 6% increase in the survival rate seemed logical to me. If I had the surgery, I might have opted out the chemo as well. If I had other health issues I may have made different choices. Lot's of "what if's"... Chemo was no walk in the park.

In regards to radiation treatment choices, I have found that if a particular treatment modality is not offered within the practice, most doctors won't recommend it for one reason for another. Either lack of experience or knowledge, such as PBT or even IMRT in some cases (although that is changing rapidly). It might even be that the radiologist has an financial interest in the equipment and wants to maintain a high patient throughput. The medical profession is a profit making business after all.

Linear accelerators typically pay for themselves in 3 years and have about a 5 year lifespan -you do the math. My IMRT treatments cost over 5K for every 45 minute session (with about 15 minutes prep time, etc. -it was another $20,000 for the programming)

For this reason I consistently plead with people to find their way to a comprehensive cancer center where they can offer all possible treatment options.

I also personally feel that second opinions should be done outside of the original practice.

There are some whose lives were saved by second opinions and there were some who did everything right, had the most aggressive treatment at the best treatment centers and still died.

Ultimately it's up to God when we are called home. Stay in the "now", love one another, serve one another, treat each other with kindness, forget about the numbers. Each of us only has this moment.

PS In spite of Dan said, even though I didn't surgery and am eating quite a lot of different things now, I still have some swallowing issues and certain foods I have to be very careful with. I too am the last one to finish eating and frequently leave food behind because people get impatient with me (but not my wife fortunately). I still occasionally choke on things. At 14 months post Tx I am little surprised that some things have just not improved appreciably. If I had it to do over again I wouldn't change anything.

In balance I am grateful to be alive because without treatment I would died a long time ago. I am grateful for every day.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
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I should also mention, mainly for Danny's benefit, that not all persons are good candidates for IMRT. I am sure it is available at MD Anderson.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
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Just so everyone is clear - there are two types of chemo involved in head and neck cancers. One that augments the effects of the radiation given at the time of radiation, and the other a systemic treatment to deal with potential or actual distant mets. In all the conversations people have with their doctors this fact is frequently misunderstood. Be sure you know which type they are considering and why. Ditto reports of success rates and end results. There are many variables; location of tumor, number of nodes, differentiated or not, non-local mets, etc. etc. that make up the treatment protocol decision process. We must all be careful to consider that while each of us has had different types of treatments, or offered different choices, many of these things dictate those options. Also, as Gary mentioned, major comprehensive cancer centers frequently approach this differently that small centers, or those doctors in private practices. Lastly, data from any study of any treatment or pharmaceutical is judged to be efficious by a variety of standards. Too many to list here, but I will just mention the two most obvious, the number of individuals in the study and who conducted it (also add how long ago was it done and is the information still viable). Anyone who has read the so called published studies on shark cartilage for instance, knows that they were conducted by a flim flam entity, with doctors that no one had ever heard of, on extremely small groups of patients, at facilities that no one knew of, or were very small in foreign countries with no regulatory oversight, with subjective results.

Additionally our understanding of all this is changing at the speed of the Internet and resulting global cooperation these days. Much more so than say ten years ago, or even 5 years ago. Multiple centers of credibility, evaluating something in different countries, verify the end result and we then have tangible evidence, that I would bet my chances on. Small studies with few participating institutions, may give us preliminary results that are promising but may not change end results when looked at in larger scale. A group of 100 patients instead of 10, or over 10 years instead of 4. It is always good to do the best research you can, ask questions of your doctors if you believe that they have overlooked a possibility, and then, if satisfied with everything decide on treatments with their expertise as a major contributing factor in the process. But chemo isn' t just chemo............. and their in lies part of the confusion in all this.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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When I was offered my treatment plan at M. D. Anderson, I was told that chemo would only give me a 5% edge over radiation alone. I took it as I didn't want to have to do this again. At the time, I wanted chemo to mitigate the chances of recurrence and metastasis. The ultimate result was the post-chemo/pre-rad CT scan showed that my primary (2cm BOT) had pretty much disappeared and the largest node met had shrunk to half it's size. Not that this was curative, but it was good to see my disease react to the drugs and they also told me it was a good indicator of what my response would be to radiation. It was all good. I go back for follow-up scans next week.

-Brett


Base of Tongue SCC. Stage IV, T1N2bM0. Diagnosed 25 July 2003.
Treated with 6 weeks induction chemo -- Taxol & Carboplatin once a week followed with 30 fractions IMRT, 10 fields per fraction over 6 more weeks. Recurrence October 2005.
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I have to agree with Gary on this. Lets look at Brett Butler. I am pretty sure he just had surgurey and Rad. He is a 8 year survivor. Others however have induction Chemo and IMRT with Chemo and still have reaccurance and die.

What we are all searching for is something that is not there (not yet). This is a nasty son of a B&*^%. As long as you are reading this post however you are on the "right side of the grass" as Brian put it in his bio.

Love each other. Love your family. Hug & kiss your kids. Kiss your mom. Summer is coming. Lets all try to enjoy whatever time we have left.

I was standing in line at Walgreens the other day and a Bob Seger song came over the radio that I had not heard in twenty or so years. I just started singing and dancing in line. People were looking at me like I had three heads. But I just dont care anymore. I am going to do what I enjoy from now on. I have had a pretty good life to this point and if god call me home so be it. But every day I am here I will thank him and enjoy what he gave me.

Take it easy everybody.

Robert


SCC 1.6cm Right Tonsil 10/3/03, 1 Node 3cm, T1N2AM0, Tonsil Removed, Selective Neck Disection, 4 Wks Induction Chemo (Taxol,Cisplatin), 8 Weeks Chemo/Radiation (5FU,Hydroxyurea,Iressa), IMRT x 40, Treatment Complete 2/13/04.
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Robert,

I can't believe you would give such great advice and not tell us the name of the song that got you dancing at Walgreens. I was just forming the visual but I didn't know what to hum.

You are right, the world takes on new meaning after a near-death experience and each day is a gift.

Ed


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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Well said, while we must be diligent about follow up, we should live as much as possible in the present moment and make as much out of each day as we can. You can spend too much time trying to find that 3% advantage, and miss the beauty of your life going on right now. Likewise you could step off the curb at the wrong moment tomorrow and cancer recurrence will be a non-issue at that point in time. Focus on the positive no matter how small a portion of your day it may be if you are in pain emotionally or physically. Dance while you can, Love unconditionally.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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Hey Ed,
Anything from Seger would have me dancing in the aisle. Him and Skynard were the big men on campus when I was living in the dorm at University of Maine................sooooooo long ago!
How true that it's easier to appreciate now what before we were to busy to stop and take notice of. I walked outside the other day after it rained and it smelled SO GOOD!!! I wouldn't have noticed it a couple years ago.


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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OK, OK. The song was Ramblin, Gablin man.

For the Seger fans out here.

Talk to you soon,
Robert


SCC 1.6cm Right Tonsil 10/3/03, 1 Node 3cm, T1N2AM0, Tonsil Removed, Selective Neck Disection, 4 Wks Induction Chemo (Taxol,Cisplatin), 8 Weeks Chemo/Radiation (5FU,Hydroxyurea,Iressa), IMRT x 40, Treatment Complete 2/13/04.
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Yep, that would have had me shuffling the feet at least. I really liked the song Back in 72 before he was with the Silver Bullet Band.

Minnie, I am so sorry I never pictured you as a Seger or Skynard fan. eek I remember seeing Marshall Tucker Band, Charlie Daniels and Lynyrd Skynyrd the same week. It just about broke the bank for me but it was before Ronnie Van Zandt bit the bullet. Eric Clapton is planning on a great show here to promote his Antigua drug place, The Crossroads. I bought the tickets just before my 6 month scan, just in case! Check out who all is going to be there:

Johnny A
Jeff


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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