Here we go then...

Kent Cass said:

Mostly agree-

with what Phrannie said in her 3/7 post. Yes, the rads are different for everyone, as they are customized to zap your C in the specific places the ENT and rad Dr. thinks needs to be zapped, and most everyone's C place(s) is different. And yes to the taste buds and saliva, and what you experience in terms of the physically negative will be individual to you and the specifics of your C and tx.

Do, however, think the Chemo can be different: Cisplatin typically makes for a rougher trip thru the tunnel of tx than Erbitux, and a number of people have additional Erbitux after the 35 rads are done. I was Cisplatin with a unique delivery regiment that rendered me incapable of any rads in weeks 5&6, and had to be hospitalized in week 6 for 4 nights, not to mention having to start the PEG feedings 5 days into tx. And the Chemo can be different in when the patient gets it. With the NPC that Phrannie and I had- concurrent C&R is the accepted standard. For a number of other H&Ns, they start with just Chemo for a month, or so, then deliver the rads, though I wonder if some of that is still the Drs experimenting in studies of what works best for certain Cs. 

An example of differences might be highlighted by Phrannie and I, who both had NPC:

1) I cry a lot, and she doesn't

2) I was "unknown Primary", and the only way they knew it was NPC was the cell structure analysis; whereas I think P-51's Primary was known to be behind her nose, and in certain lymphs, which allowed them to zap fewer places than done to me (I got zapped in 20 different places/session).

3) My rad Dr had some sort of Vendetta going against my mouth. Maybe she didn't like my smile. Whatever, my mouth took a mega-hit, which included scalding of my tongue, and major tooth damage. Phrannie has a lovely smile, and so they might not have wanted to change that in any way, for the sake of Montana's tourism, or such as that.

4) I got Cisplatin in that unique delivery regiment, and I'm not certain P-51 went the full course with Cisplatin.

Best advice is that your Drs know your individual C specifics, and you have to hope they're "with it" on what is best for you.

kcass

You're right, I don't cry much....but I am neurotic....very neurotic at scan time.

I was zapped in only three places that I know of....the tumor behind my nose, and a lymph node on each side of my neck.

I did get my smile back, but it was pretty ugly during the adjuvant chemo after rads.

I got 3 Cisplatin treatments during radiation (also had Amifostine daily....the "daily sick shot"), they were 3 weeks apart.  After rads were over I had three more Cisplatin treatments with a 4 day fanny pack of 5FU, every three weeks.  It was 5FU that tore my mouth up.  I think I had the full course....sure felt like it at the end....LOL.

p

Mart1n0 said:

Confused.com

whats most confusing to me is the variety of treatments and outcomes for what appear to be very similar conditions.

Have a look at this link  http://www.briantracy.com/blog/tag/throat-cancer/

Brian had virtually the same diagnosis as me but a different treatment and he seems to have recovered all his faculties very quickly, which is not what I'm being told sob sob!

 

There were several things I left out on my first respond, and welcome. What has a lot to do with what treatment one gets will depend on other factors. Overall health being the main one. Which has worked better for your doctor. For me, I was prepaired for anything the doctors could say. I did my research on my condition, and picked where I wanted to go. Which doctor I even wanted, I'm set. I met him and the tumor board all went over my condition. Then the head doctor comes in and sets down and looks at me and said, "You will not survive surgery or radition, your lungs are in to bad of shape". Ok, I was not ready for that. He said the only way they will treat me is, if they remove my larynx and I will breath ont my nech the rest of my life. Not liking my options I chose to have the larynx removed. You see, I have sever bullous emphysema and chronic Bronchitus [Stage 3 COPD] and GURD well mine is LPR which is GURD but the acid goes higher up to the throat. I have had lung issues most of my life. Collapsed lung twice. Heart is good, but have mild congestive heart failer, Valley fever, and sever other things.

Now they cut me from ear to ear and removed my tumor. I sleept through it so when I wake up, I have no voice. And a hole in my neck where my adams apple was. About the size of a nickel. Now 90% of the other people that had a laryngectomy have a tube inserted in the stoma [hole] but I don't. At that tome I never thought about it but now I know so many that have a laryngectomee and they had a Lary tube so the hole doesn't shrink. I an with a world wide suppory group so I know hundreds of them from all over the US and world, but they all had a tube. Down the road most can remove the tube but that is several years, and I never had one. My stoma never got smaller, it just got better and almost, a perfect round hole. Why, I can't answer, but the others that went to a different hospital and doctor, all have had it worse than I did, and problemy with it shrinking. So how one is treated for there cancer, really depends to where you went and who was the surgeon. It also matters on radition. I know many that once it was maped out they had radiation done local. I would never have done that If I needed it. I know one who did the radition local and had to be airliffed to where I went as they almost killed her.

So in summery treatment all depends on where you go, who does it, and what other conditions you have. With my suppory group for the other Laryngectomee, the only thing we all have in common is, we breath out our neck. Thats it.

I hope this answers your question more than confuses.

Bill  Oct 2013

Kent Cass said:

Bill

I wonder if age has anything to do with stability in the size of the hole in your neck. I had a tracheaostomy with the Sterling Silver tubes for 26 months back in '68-'70, when I was 13-16 years-old, and my windpipe getting rebuilt. My case does not apply, because string was attached to the outer tube and mold in my windpipe to enure it stayed in place; however, I have seen over the years a number of people with holes in their trachea area, and no trachea tubes, and they're all middle-aged, or older. As younger people are still growing, might age be a factor?

Agree with pre-tx health possibly being a factor if other bad health issues are involved; but, when it comes to C&R, which you did not get, typically it is just the C specifics that determine the Doctor's plans on the C&R treatment. I do know of older people who have been told they are too old to get Chemo, and only minimal rads are an option, and I know LiseA is also having complicating other health factors, but please realize that in the vast majority of the cases where C&R are to be done, and which might also include surgery, that it is which C the patient has, and the specifics of that C which determines the course of C&R the Doctors will use. You are one of only a few in the many years I've been on this forum who only had surgery, albeit very major surgery. Most, when surgery is involved, only involves removal of the Primary and a number of lymphs, often with follow-up C&R. AND, this is what our friend from England who started this thread is dealing with after the tonsil Op., and now the C&R he's going thru. Agree 100% that one wants to be treated at a top-notch C Med Center, and small city Centers should at least have their tx plan reviewed and approved by a major C Med Center. U of Iowa reviewed mine.

Of note: when the epilglottis is involved, then overall health can often come into play, due to the major rehab from that, post-Op., and the big change it brings to the swallowing function for the rest of their lives.

kcass 

I don't think the shrinking is age related. Most of the ones that wear a tube are in the 45 ~ 70 age but I have seen 19 year old as well. I have been thinking about this more and more over this last year as I have met so many over this lasy year and a half. I have taken on the job as one of the Admin for WebWhispers support group, and in doing so have spoken [messaged] with so many from all over the world. Many only have to wear theirs for 4 or 4 hours so it holds it shape. Now many are larger in diamiter than mine and that just might have a factor, but you're only talking about 3mm larger. The tubes go from 12mm to 18mm, and most of what I read 15 is where they like as the normal smallest size. Mine is 15.5 mm.

I have been told by SLP [Speech Language Pathology] that they have changed the procedure to now all get a Lary tube. All I really know is mine was swollen at first and not round at all. It looked more like a slit and very elongated oval shape. As the days went by it really got very round in less than 17 days. The Nurse that had to come to my house to check on me took one look and said Dr Kaplan did yours. He could just tell by looking at it and the color of the stitches. Also said this was the best one he had ever seen. Now at this time I just guessed everyone was done like mine. Over the next year it seems that mine just went better than most, as even the doctor commited, this is the best one I have done. I do know that many have had radiation after they do the surgery and many before having to do surgery. 

Now to complacate more, I have what is called a TEP [Tracheoesophageal puncture] which is a hole that goes from my trachea to the esophagus and had a prosthesis [oneway valve] so I can talk without vocial cords. Now having radiation to the nech can make that have many problems. So it seams that radiation is what causes most of the problems they have.

You are also correct that I am just about the only one who never had radiation. It was descused at first by the tumor board. The rasioligest wanted to do radiation first, [which I was not going to let happen] with the hope of shrinking the 3cm x 2.5 cm tumor, hoping to save my vocal cords. I think surgery could have done that if, my lungs were good. Several doctors were in the room when they scopped me 17 counting inturns, the room was packed. When they all went back to the board and descused my case is when it was decided how to proceed. The anesthesiologist would not put me under because of my lungs. So he said he would only with having a laryngectomy to make sure I could get enought air. Which maks since as all the air goes through your vocal cords and my left one was blocked by the tumor. Mine was far from being normal, however they said the surgery was textbook and never had any problems or even needed and blood. Was done in 8 hours and I was told it could be 15 hours.

My tumor was found when they tried to scope my lungs to find the cause of bleeding. He never got through my vocal cords and onlt die a brushing on the tumor. He said if he did a biopsy he might not be able to stop the bleeding. The brushing worked and it confirmed Cancer, and that is when my research started.

Bill