masked man and a radiation machine

[Jim Nilsen]

Awhile back I was asked to post a pic of the radiation machine that has been toasting my neck and internal parts like the cancer part of my tongue.
It has been the toughest thing I have ever dealt with because I felt great when I was diagnosed. I just had a lump in my neck in a lymphnode. I prayed it was a swollen gland but it wasn't.

I have no taste buds and my saliva was gone for 7 days. I stopped treatment for a break because I was toast. My tongue was like a microwaved overdone hotdog and I couldn't believe anything even cancer could be left alive. I am feeling much better after a week and a half break. So I have had my tongue scoped to see if the cancer was gone.

YEEHA it was gone . I now am up at odds to go back and do more treatments. I never would beat a dead horse except to tenderize it for the grill LOL. So do I continue? GOD keeps leading me away from more damage. The docs say I have to or it won't be enough treatment. They never knew how much they were treating to begin with so how do they know how much I need for treatment? It's like how much horsepower do you need question but it is tearing me up. I am getting a 2nd opinion on friday from a totally independent doctor and am very open to what he says. The current docs just tell me I am going to die sooner if I don't do them even though it is gone. I don't think guessing is the right way to make a decision and that is what they are doing even if it is an educated guess.

Do any of you know someone who has survived head and neck cancer, squamous cell carcinoma and how long they have lived? The docs have noone for me to talk to that they have treated other than a good friend of mine who had it on her voice box at stage 1. She is doing good and is cancer free still after 2 years.

So here are the pics. Yes its me in the mask.

[68sixspeed]

Jim- Best of luck on the battle...

I have a friend (also a gear head) who went through cancer on his cheek and tongue last year. I'm not sure the exact type of cancer, but he's been back to work and racing all year. I think the surgery was around this time last year. They gave him a clean bill of health after it was all done. Hopefully you are as lucky.

As far as the treatment, second and third opinions are always a good thing, if they point to more, bite the bullet and do it.

Best of luck, hope it all works. -Dan

[Martin71RS]

Wow Jim, the first pic is weird.....didn't they have the red/blue spiderman edition available?:rolleyes:

seriously though, good to know you are feeling a bit better and I hope you don't need the second treatment....but if you have to....good luck! (we want to keep you around here!)

Martin

[Damn True]

So Jim....smoking or dip?

[Rick Dorion]

Absolutely get a few more opinions and weigh the input. Best wishes, Jim.

[BA.]

Well Jim, its GREAT to hear that it appears to be gone for now. I wisy you all the luck and strength going forward.

I agree with your doubt about the current doctors thinking. If you do forego further blasts though, is there a 'backup plan' or follow-up check in the future?

Hope that 2nd opinion bodes well for ya!

[WS6]

very freaky looking experience. Glad to hear you're doing well. Always get a second opinion. Best of luck to you.

[Larry Callahan]

Glad to hear you are doing better. Best of luck man!

[Steve1968LS2]

My step dad had it in his throat recently.. they did the radiation and he was just found to be cancer free.

But it was TOUGH.. the treatments really messed him up. Things like sunburn and he was only able to eat through a tube for weeks since it burnt the inside of his throat.

But he sucked it up and pushed through it. Now it's looking good.

Hang in there, sometimes tough times call for drastic measures and we're all pullin' for ya.

[trapin]

If the 2nd opinion tells you to do it...then you gotta do it. Better safe than sorry. As always, we're here for you and are thinking of you.

[mjl]

Jim,
You need to follow up with this. This type of cancer is very dangerous. I had the same thing and went to many doctors about the diease. You need 70gy (I think that is the amount) of radiation IMRT preferrably, chemo and potentially a neck dessection. That is standard treatment. You have stage IV or III cancer - stop drinking and smoking and eat right. You asked about statistics of survival - see patterns of failure head and neck cancer in google search and look for article out of University of Chicago. I am 2 years out and clean but still have considerable risk. There is also a oral cancer society website with a variety of survior discussion. Please follow up ASAP - time is an enemy and you need to suffer to live in this case. I am not trying to scare you, this cancer and its understanding and defeat is part of my make up now. best MJL

[Mr.VENGEANCE]

keep pushin Jim.. youll look back on them photos and laugh.

much luck!

[Jim Nilsen]

Hey everyone, I want to thank you all for thinking of me. You guys are the greatest. I am feeling better again today. Each day brings new healing and going back for more treatment will be hard but if I have to I will. I needed the break and it isn't uncommon for one to be needed.

All of the info and insight is help to my world right now beyond anything else .
We now have a new member because of my post. Do you think we can get him hooked on pro-touring?
It's good to know that someone cares enough to search out people to give them helpful information. What I have is serious and I know it. I also know that radiation causes cancer and it tears me up beyond anything imaginable.it's a double edged sword.

I will be getting more info from another doctor tommorow and am still open to anyone who knows someone to share what I am going through.

Thankyou especially Steve Rupp and I look forward to hearing more from you.

I do know that no matter what happens I will be alive for the Run to the Lake and if I have to get help I will have the Cormaro running by then and hope it is ready to make the trip. If not my nephew is going to make sure I get there to see all of you and have a good time being alive.

Jim Nilsen:angel:

[1360]

I'm glad to hear you're feeling better. After going through chemo for Type-II B Seminoma, I can relate. But, get through the treatments & get on w/ living the rest of your cancer-free life!!!

Good luck!!

D
Cancer free for 2-years & counting

[Jim Nilsen]

The 2nd opinoin ,What I found out yesterday.

I had stage II cancer,not stage 3 or 4 and the scope showed me to be clean and looking really good for as much treatment as I have already had.

The doctor had much better equipment and a much better way of explaining everything. He actually looked at me and told me what was going on before he had read the 1st doctors report ,so he was unbiased by another opinion. He didn't plan it that way, it just happened that way. The nurses hadn't presented him my file and told him the whole 1st docs file had been forwarded.

The survival and cure rate is way different.

The good thing he told me is that the treatments obviously have been doing what they are supposed to from what he read and could see.

This is a microscopic disease and they have no way of knowing if it is all gone or not which really sucks. Unlike some other cancers that can be detected by blood. So it is all a guessing situation on the part of the docs and they are treating me for stage 4.

The new doc can scope me out regularly and we can look and record what is going on. The 1st doc doesn't have nearly the same equipment and that is disturbing to me. The 1st docs is like something we would have in your tool box to look in a cylinder head or carb and the 2nd docs is at least like the monitored scopes with a recorder in a modern garage. The irony is that the older doc has the newer equipment ? Go figure?

I was fried up beyond what my body could take and it felt like overkill so far. I really wish the 1st doc had done better documentation and would have recorded visually what the base of my tongue had looked like. All the other docs are just doing the maximum to be sure.

It's almost like the horsepower question and " How much do you need" The safe side is on the lesser not the more. If you want to beat everyone for certain you need more just in case you are incapable of something, except surviving the ride alive.

I have researched treatments for 3 months now and have seen many doctors who will tell you that there are better ways than radiation and chemo and then there are those like my doctors that only know radiation and chemo. Both sides are very credible. The radiation and chemo group have a less survival rate for a longer amount of years from what I keep seeing.

Medicine is changing at a rate beyond belief right now and every doctor that is curing someone is getting slammed as not being researched enough. Patients are happy but some other doctor that hasn't even seen them isn't. It's like the witch hunts of Salem. there are people being cured in safer ways, I just can't get to them right now. Do I have time to get to them ? My odds are as good from what I have seen.
A new president will make a big difference in health care and it is the biggest buzzing sound in the medical industry right now. A lot of people see changes coming very soon. The doom and gloom people will always be there, positive people are positive about that !

I keep saying I don't give a lab rats ass about rat research if there are actual living people who were said to be dead in a week and the same doctor that gave the the bad news can't understand what happened to keep them alive other than what the patient did worked. There are too many people let to die who want to do something new because the AMA and the FDA restrict research on them. Yet my chemo doc was right on top of trying something that would add 24 months to my life by research, not cure me but just add 24 months.

5 or 10 years ago it would be a slam dunk decision to follow the doctors. These days it is much harder. Much Much harder.

The facts of what I have is that it comes back even when they say it is all gone and a person does all of the treatments the docs give you ,the excuse is that they couldn't test for it to know. They also tell you that it can spread to other places. The likelyhood of it mutating is directly related to the radiation. Radiation KILLS your body and it is POSITIVELY known to cause cancer. Everyone who is at the radiation lab wears a docimeter if fear of getting exposed.

Everything is based on fear and uncertainty. They all tell me I am going to die but don't know when.
I want someone to tell me I am going to live ,even if it is for a day.
At least a day is more POSITIVE.

Thanks for listening and being there to all of you.

I believe I will make the right decision for me and I am the one who is going to have to live with it. That much I know for sure !!!

You can't make new progress without trying something new and God knows I have done what is impossible to many others many times because I believed it based on what I really know is true to me!!!

Be true to yourself and your God

:angel:

[Part Time]

Jim,
This family and my family are praying for you.

Keep the faith.

PT

[CRCRFT78]

Oh I don't miss that at all. 5 days a week for a month I went thru radiation treatment myself. The worst part was the hair falling out in the spots they did the treatment (neck & back of head). I will keep you in my prays Jim, you'll get through this. Your extended family is here for you.

[Jim Nilsen]

hey guy's, my treatments are finally over. I was highly sensitive to the radiation and was not able to finish all of them but I can tell you that it felt like it killed everything including me. I have been scoped out and have been told that none can be seen anymore and there wasn't that much to start with.

I have learned a great deal in this journey and quite possibly know more about why ,how and where I might have gotten my cancer from than the doctors did. Even they are thinking about it now along with new treatment I have shown them that they didn't know about.

Any of you who ever get cancer need to remember that each institution has their own adgenda and will stick it to for ethical and legal reasons that have nothing to do with your care. Research everything you can before starting a treatment if you have time to do so. Don't let the fear lead you down a road that you might regret later for your own health and saftey. I followed the doctors telling me they had the best machines and treatment only to find better elsewhere. I did get good treatment and everyone was very good but I could have gotten the next step better if I had gone elsewhere, i also could have gotten a lot worse. This is just something to think about if you or someone you know or love gets cancer. GET A SECOND AND THIRD OPINION FROM A COMPLETELY DIFFERENT INSTITUTION not just another doctor in the same institution. I wish I had gotten this advice before and can only say that I am glad that I was at a very good one in most aspects.

I have a road of being scoped out and tested regularly and will. I have a new diet and way of life that has already changed my body dramatically and I am healing very rapidly according to my doctor and his nurse. No more articifial sugars,caffiene,alcohol and assorted other items that cancer feeds on for me ! I don't want to feed it for sure.

My saliva is coming back slowly and my tastebuds are too. I hope to be able to realistically taste something by Xmas and get the feeding tube removed in January as long as I can eat well by then orally and am gaining weight. I lost 20-25 lbs and I really didn't have it to lose. I weigh what I weighed when I got out of high school and was a scrawny little wirery kid.

So there you have an update and I want to thankyou all for your thoughts and prayers over this time and look forward to being alive for a long time and if not I will make the best out of what I have left !!!


LET'S GO RACING :1st:

[trapin]

Jim...very inspiring...and some sage advice indeed. Congrats on the good news and thank you for sharing this experience with us. I'm sure we've all learned a lot and hope to NEVER have to use it. Best of luck to you my friend. Now it's time to get busy living.

Lets go racing?

You bet.

[CRCRFT78]

Congratulations Jim. Going through something of this magnitude not only makes you a better person, but a wiser more humbled person. And I mean that due to experience of my own. The road ahead will only get smoother as long as you continue to take care of yourself and take the necassary steps to remain healthy. Again, CONGRATULATIONS on completing your treatments. :twothumbs