Throat cancer

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Throat cancer

by Gatoruno on Fri Mar 27, 2015 07:08 PM

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In October of 2014 I was diagnosed with throat cancer. I sought out three different medical centers for their diagnosis and treatment protocols. The Mayo Clininc recommended I go to the Davis Cancer Center at the University of Florida. The Davis Center is associated with Shands a teaching hospital at the University of Florida. The Mayo Clinic said the two radiologist that wrote their protocols were Doctors Mendenhall and Amdur. Dr. Amdur agreed to take my case, because of throat configuration and heart condition, all three medical facilities initially recommended surgery, radiation and chemo. Dr. Amdur said that he thought radiation alone would be sufficent, he thought surgery had more risks than benefits and chemo might pose a significant heart risk. I have had a six way by pass and f (10 years ago) and four subsequent stents. So I agreed to radiation as the sole modality of treatment. I had 35 radiation sessions, 1 per day, 5 days per week. Nothing about it is pleasant. It is 6 weeks since my last radiation. Incidentally, I have never smoked and am a 70 year old male. I was quoted a 90% chance of success. Dr. Amdur is considered as good a radiologist as there is. My questions are primarily these, Taste: all fruit taste bitter, in fact not one thing tastes as it did before, is this permanent? Dry mouth, unbelievable, I keep water close by, when I wake up it is nightmarishly dry? Any reasonable chance of improvement? Finally, I am waiting for 90 days for PET and CAT scan, it is so damned scary, any positive stories about radiation working will be much appreciated. I am so worried.

RE: Throat cancer

by PopPop on Fri Mar 27, 2015 08:54 PM

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Gatoruno,

I am glad to read that you are done with the radiation treatments. Unfortunately, you can still be "Cooking" for a few more weeks. Each person recovers at their own pace. Some Cook for 4 weeks and others 8 weeks, this is a rough estimate given to me by my Radiation Oncologist years ago.

Your taste will return but slowly. Try to think about your progress in weeks verses days. It will happen, but when yoou take one step forward, you may slide back two steps for awhile. I have severe dry mouth, so I know of what you speak.

Yes, we get concerned about that first Scan, we have gone thru a lot already and we don't want to hear any negative talk at this point. Just be aware that the Radiation can linger and you can possibly get a false positive reading at the 3 month scan. I have read it from other posters on here that they had to redo their scans again after another 3 months. My Surgeon waited until around 5-6 months for my scan and it was clear.

My Best to You and Everyone Here

RE: Throat cancer

by augustus on Fri Mar 27, 2015 10:11 PM

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Sounds like you are doing "great".  You have been through hell and are still able to eat. I am 3 months out and am starting to get some taste back. Not much and not enough, but a little is ok for now. The dry mouth is still there. Biotine is helping. Some on here use Stopper, but I have not been able to find it. The advice to judge in weeks instead of days is spot on. And that first scan is nerve racking, but it is a good feeling when it comes out like it is suppossed to. I had mine a couple weeks ago. 

RE: Throat cancer

by Sdurnell on Sat Mar 28, 2015 07:37 AM

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Gator,

Congratulations on finishing up your radiation.  It shouldn't be long now before you start making the long, slow trip back to your "new normal," which I hope is quite similar to your old normal.

I don't know what the configuration of your cancer was or its staging.  I had stage III cancer, in one lymph node only (<3cm) and encapsulated, no primary found.  I did have radiation to remove the lymph node and others on that side, but only radiation afterward.  I'm now about 4.5 years out of treatment, and all my scans have been NED (no evidence of disease).  I had the first one at 4 months, as my RO likes to wait the extra month to keep out the possibility of a false positive.  One more scan this fall until he declares me cured.

The taste comes back slowly.  I could taste foods correctly at one year, but it was not consistent.  Often only the first bite of a food would taste good, and the rest could have been sludge.  By two years out I could taste pretty much everything, although I think it took a bit longer for wine and alcoholic drinks and cola, none of which I needed anyway!

And saliva is similar.  After a year, I had some, and at two I had more.  Now I can eat bread and hard candy, and don't need use water to moisten everything.

You have this wonderful doctor, so I'm surprised that he has not told you what to expect.  But from my chats online it seems many doctors don't.  I hope you had your teeth looked after before the radiation, and that you are using your dental trays diligently.

Best of luck to you.  Things will get better, but sometimes it seems the scale is glacial.

Susan

RE: Throat cancer

by TommiColley on Tue Apr 14, 2015 05:10 AM

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I was just diagnosed with Saquamous Cell Carcinoma on my voice box, and lymp nodes in my neck and chest.  I am a single mother with two daughters, 11 and 16,  I am terrified!  I think I am supposed to start radiation and chemotherapy this week.  He said it's going to be a long, hard road and it was going to kick my butt.  He first wanted to do surgery, and if he did, I would never talk again and I would have a hole in the front of my neck.  I am 47 and I'm just not ready for my voice to be taken away, not to mention the hole in the throat.  I am so sorry for your diagnosis.   I pray you are able to taste food better.  I was just wandering if you or anyone could tell me what radiation and chemo are going to be like.  I keep looking in the wrong places I guess.  Thanks for your time.

RE: Throat cancer

by TommiColley on Tue Apr 14, 2015 05:15 AM

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I was just diagnosed with throat cancer and I have to start radiation and chemo and people keep refering to radiation as cooking.  It that what it does?  Cooks you!!  I've heard that and I am terrified.  Is there anything good about it, besides getting rid of the tumors?  Thanks and God bless you.

RE: Throat cancer

by PopPop on Tue Apr 14, 2015 03:06 PM

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TommiColley,

I am sorry that you are here seeking answers to your questions. We will try to answer what we can for you.

First, I didn't have Chemo so I am unable to speak about the side effects of Chemo with you, but there will be others here that can tell you what they did to make the journey doable.

Secondly, I had Base of Tongue cancer. I had surgery to remove part of my tongue followed by radiation about 7 weeks after my surgery. I was given time to heal from the surgery before the radiation started.

The Radiation and Chemo are cummulative, so each dose builds upon the prior dose. So when we speak of "Cooking" we are talking about the full effects of all the treatments combined now working on us. This period can last anywhere from 4-8 weeks. We tend to think that from the last treatment, things will start to get better the day after the final treatment. That is when we actually feel worse but slowly recover to our "New Normal". 

It sounds scary to many, but you probably have noticed that there are a lot of people here that have traveled the road you are about to take. We made it, so will you.

Remember, each person reacts differently with treatments, some people have slight reactions to them and others feel the full effects. I felt that I did pretty well campared to others that I went thru treatments with. Listen to what the Nurses suggest. I tend to over do things, so when I was told to rinse and gargle with the Baking soda and Salt solution 3 times a day, I was doing it as often as I felt I needed to and it really helped take the edge off of my discomfort with the sores in my mouth.

So, we are here for you to lean on, vent when needed and ask as many questions as you need to to get your answers.

My Best to You and Everyone Here

RE: Throat cancer

by ElvisnAndy on Wed Apr 15, 2015 12:18 AM

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Gator,

I am 48 and in my 4th year of being a stage 4 defeater of tongue/throat cancer after being mis-diagnosed for almost a year by my doctors in Illinois.  From my experience, a positive mental attitude will be your biggest ally in your fight with this beatable challenge you face. And although it was difficult at times, finding at least one thing to laugh about each day really helped.  I opted to attend MD Anderson in Houston, Texas and had similar treatments that you have described. First, they can never stress the importance of your swallowing and neck stretching excersizes enough.  I did mine faithfully and still have some issues with cramping in my neck and swallowing, but they have both improved greatly over the years, largely because of the excersizes. And my issues are much better that almost anyone I have met that has gone thru a similar treatment. I still can't eat everything I want, but my "can't swallow that food" list is getting smaller every year.  Now, I can eat most things, as long as they are cooked properly for my needs. For my neck cramps/shrinking I have found an FDA approved all natural pain patch that increases the infered heat in my neck that keeps the blood flowing better.  They last about two days and help me tremendously.  I would have not used it when my neck was still raw if I had found the patch back when I was fresh out of radiation.  I was way to tender then to even consider something like that.  When my neck was raw, I added therapudic grade lavender to the Eucerine lotion and had my oncologist tell me that my healing was at least 2 months ahead of anything she had ever seen before.  Plus I'm told the lavender can help with internal scarring and/or damage but don't know that for sure.  PLEASE UNDERSTAND I AM NOT A DOCTOR AND AM NOT GIVING MEDICAL ADVISE.  THESE ARE THINGS THAT HAVE HELPED ME PERSONALLY.  AND ATHOUGH WE HAVE SIMILAR EXPERIENCES, THEY ARE STILL UNIQUE. EXPLEASE ASK YOUR DOCTOR BEFORE DOING ANY OF THIS. As for my taste buds, they where HORRIBLE during and right after treatment.  I couldn't use metal forks or spoons or cook in a metal pan that wasn't coated in ceramic or similar because all I could taste was the metal.  Anything like fruit that has it's own natural sugars or sweetness was very bitter early on.   Eventually, swallowing got so difficult that I had to go on a feeding tube for a short while (about 2 months) as well.  Even while my tube was in I would somethimes try to eat before using the tube. But I never gave up on my swallowing and stretching excersizes or my fight to get better.  Now, about the only thing that tastes off is really sweet things, like soda.  Everything else is pretty much back to normal.  Dry mouth...mine is still getting better and is probably 50-60% of normal.  I still need to carry water everywhere I go, but am still trying various natural/homeopaths etc.  If I find anything that works, I'll be sure to share it with you.  For now, I've just learned to sleep lightly, with my mouth closed.  Wouldn't recommend sleeping lightly but the sore throats after a night of clogged sinuses are rough.  I've heard that XyliMelts have helped others with over night dry mouth, but they didn't do much for me. Chance for improvement...my doctors have attributed much of my improvement on my lifestyle changes of eating healthy and getting proper nutrition.  Early on, if I had to blend everything up in a blender and drink my meals, I did.  Wasn't fun, but I was getting the nutrition I needed and was technically eating what I semi-wanted (at least more so than without blending).  With out knowing your exact situation, I would still say you have a great chance to improve if you have similar results that I have had. Finally the dreaded CTScan and PET Scans.  They still scare the smile off of me for two weeks before I have to do them.  They are the reminder of the thought that "Gee, maybe this stuff has come back with vengence".  I'm up for suggestions on how not to get nervous about them.   The great thing about these tests is that your  doctors now know exactly what they are looking for and where to keep a close eye on, and are on top of things.  I did chemo with radiation.  And when I asked my oncologist why both, she said because the chemo shrinks the tumor but won't kill it.  But they use chemo when they can to reduce the amount of area needed to be radiated.  Positive story about radiation.....you are nearing the end of the worst part of the after math of treatments.  Healing will be slower than you want (if you are like me you'll want healed yesterday). About 4-10 weeks out of radiation seemed like there was nothing good in sight.   You are now at the stage where I found it to be the most difficult.  However, things should start slowly improving before too long.  Things get better!  They have too, because 6 weeks out seemed like nothing could get worse.  Hang in there and keep up the good fight!

RE: Throat cancer

by ElvisnAndy on Wed Apr 15, 2015 01:05 AM

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Tommi,

  Technically, when you cook something it can never go back to its original state.  However, your body can do a lot of healing in the the radiated area.  Cook is just a term many of us use because there's nothing else to really describe what is happening, just like when you get a really bad sun burn and say you got "cooked" or "fried" by the sun.   Radiation itself wasn't bad for me until about 3/4 of the way thru it.  That's when my neck began to get red and sore, but nothing major until radiation was almost over.  After radiation was something to prepare for.   The radiation will still be doing it's thing for a little while after your last session.  I was under the wrong assumption that once radiation was over everything would be great and that I was home free.  No one ever told me that, it's just what I thought.  That's when it is time to tighten you belt and prepare to fight.  However, do everything your doctors tell you to do even when you don't feel like it, especially your stretching and swallowing exercises.  They are sometimes very difficult to want to do, but they are vital to a better recovery.  Anything good about radiation except getting rid of tumors? The best thing about radiation is that it has enabled me to spend more time with those that I love.  That was my "Why" I went thru it all.  With out it, or something as effective as it, my loved ones would not be talking to me but about how they remembered me.  Every difficulity that I have gone through was worth that alone. And as long as I kept that in the front of my mind, things were easier (not easy).  Keeping focus on your "Why" and not the "What" can help you accomplish amazing things.  God Bless, Speedy Recovery and Never Give Up!

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