tonsil cancer afraid..

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RE: tonsil cancer afraid..

by Arman on Thu Dec 06, 2018 11:33 AM

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Lardog,

Kevin's cancer was HPV positive, but he was also a heavy smoker. This cancer has 85% chance of cure; unfortunatley for Kevin, his cancer never went away and finally spread to his brain.

RE: tonsil cancer afraid..

by Diamond_David on Thu Dec 06, 2018 07:13 PM

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90% cure rate when chemo and radiation used together. Without radiation, 60% cure

Most curable, most terrible treatment. i saved my post from years ago, heres' my story

You'll need to follow the same course of action

===============================

I had tonsils removed at age 59. They took out ONE lymph node in my neck. Just one. I get cramps in my neck and shooting pains

I know soemone who had EXACTLY what i had and they said the doctor was NOT going to remove his lymph node. they said "Why cut you, we are going to RADIATE all of your nexk anyway. Smart

So i'm glad they won't cut you

You'll have 7 weeks, 5 days a week of radiation to tongue.mouth /neck area.

7 weeks usually once a week of checmo.

There are two types of radiation. One is a SPRAY, coves all of the neck,called IMRT, the other type i like a BEAM, you want this one if at all possible. Called Tomo

I had IMRT they sprayed all of my neck. I now have 1/2 of my saliva, carry water everywhere and must eat medium rare meat. Also ruined my thyroid gland, take a pill daily. 

I have a cousin who had tonsil cancer, he had TOMO, has no saliva problems at all

if you can get the beam go for it

Most folks with neck caner and radiation can't eat or swallow after 10 days. I got a feeding tube in my chest and poured nurishment they give you in 3 times a day. GET IT. don't be a hero. 

it is a rough treatment, but 90% survival. I didn't loose hair with chemo, only threw up twice in 2 months

but radiation to neck was terrible. 

After 4-5 weeks you may not be able to work, if you do you'll be slow. I work from home with my wife. 

i know this is scary, the scariest part is your life partner is sick. See if family memebers can pitch in as needed.

if you have iability insurance, claim on it. I do and it paid for 4 months.

on the teeth, just get them celaned and any dnetal work (cavities) done first. I've had no problems with dental, I use additionally flouride tooth paste. knew TWO people doctor said go get ALL of your teeth pulled. NEVER! For 5 years went to dentis every 3 months, now back to every 6

i'm told NOW if I need teeth PULLED I must go to a baraiatic chamber to get extra oxygen before that is done, but luckily mine are OK

good luck to you. When teatment starts you'll have MORE questions, we are all here.

Also you'll have a plastic face mask (Like Friday the 13th) amde to fit. They will BOLT you down still for radiation treatment, you can't move, Its not bad. Treatment for ME was over in 15 minutes daily.

RE: tonsil cancer afraid..

by lardog04 on Thu Dec 06, 2018 08:50 PM

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Dave - Susan -Arman and all the other recent posters. As I read the post my short term memory issues cloud a lot of the issues that have been recently mentioned.

I also after four years after had a slight weight gain and thinning of my hair. It was a PA that noticed a few pounds a year in gain and thinning of my hair and suggest I get my thyroid checked. She was right and I now take thyroid medication.

I have been curious what type of chemo everyone has had. Mine was Chromo Cisplatin for six weeks for the first round.  I started the second round of daily chemo with the Chromo Cisplatin. By Thursday or the forth day blood levels were too low so they switched for the balance of the second round  to Carbo Cisplatin. The second round was a back pack of 2 litres Carbo Cisplatin and a electric pump. I did loose all of my hair everywhere except for a very few hairs that were gray.  

Dave you said a friend did not have surgery. How is he doing?

I also have not had any teeth pulled as my teeth were good but just receently I have chipped two of my lower front teeth. I do use daily, Colgate PreviDent 5000ppm Sensitive high content Flouride toothpaste. This is prescription only and my dentist gave me a prescription.  I did see an article about this toothpaste on a web ste a few year ago. Showed my dentist and he said definitely yes use it.

I was 56 in December 2009 when diagnosed. I after the first round chemo and concurrently with the second round had six weeks of daily radiation and the seventh week was twice a day.

The lady I spoke of in my last posting did not have Cisplatin chemo. Neither did Kevin after reading all the posts.

lardog

RE: tonsil cancer afraid..

by Ruthy2s on Fri Jan 04, 2019 01:16 AM

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Last Summer I had squamous cell carcinoma of my tonsil. It was HPV type. Is that the type you have?

RE: tonsil cancer afraid..

by billscampbell on Fri Jan 04, 2019 09:01 PM

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Hi I am 5 years out and my doctors have declared me cured. That means my life expectancy is the same as any other male. I had surgery, but no radiation or chemo. So there are many different ways to treat the cancer. Go to the best doc you can find and get him/her to go over all of your options. But try to relax because your cancer is totally treatable.

RE: tonsil cancer afraid..

by Sdurnell on Sun Jan 06, 2019 05:12 AM

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I had surgery (modified radical neck dissection), no chemo and only 25 radiation sessions.  After 2 years NED I was declared cured by my ENT and after 5 by my more conservative radiation oncologist.  

Treatment varies a lot by presentation of the cancer, its staging (which has undergone quite a big recent change), its HPV status, and sometimes patients are even given choices.  For example, I was HPV-, my primary was never found, and the surgery removed the one encapsulated cancerous node.  So I could have skipped radiation perhaps but wanted to be sure the beast was gone. 

This was 9 years ago, and things have changed since then as well.  So while our cases are all somewhat similar we also have differences that are considered when developing a plan of attack.

Susan

RE: tonsil cancer afraid..

by jenedie on Thu Jun 20, 2019 08:50 PM

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My brother has cancer in his tonsils and the back of the tongue.He can’t take chemo because of his heart.He is only on Radiation.Has anyone had the same situation .He is getting 37 radiation treatments.Any info you have will be appreciated .Thanks Jennie

RE: tonsil cancer afraid..

by Ruthy2s on Thu Jun 20, 2019 11:56 PM

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I had HPV related cancer of my tonsil. At the time the docs said they would give me radiation every weekday for 35 days with chemo once a week. They said the chemo was an adjunct to the main treatment and was a low dose. So our situations aren't exactly the same. The radiation was just awful. To make things worse, I am claustrophobic and the mask made me really anxious. So I told the doc and she gave me xanax. The pain was pretty bad and I didn't try to be brave so the doc gave me lots of pain meds. I was nauseated a lot so the prescribed zofran. I couldn't sleep so they gave me ambien. I wasn't able to eat but did not want to have a feeding tube so I managed to drink. one bottle of Boost a day. They suggested a mixture of xylocaine and something else, pink slimy to put in my mouth so that I could drink the Boost and some water. I say this to emphasize how important it is to tell the doc what problems you have and ask for help. They don't always know. After one year I am in very good shape- follow up scans have shown no cancer. I lost some taste buds and saliva glands but all are coming back. I don't mind a bit because I am alive and have a good chance of staying so. (I'm 75, so am not gonna live forever anyway) I was scared. You can have heart though as they do a good job with that radiation gun (or whatever) and there is a really good chance for a good recovery. It is a really tough 35 days but then it is all good. I wish you good luck and good treatments!

RE: tonsil cancer afraid..

by Perfit on Fri Jun 21, 2019 03:42 PM

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As an insurance policy, I would follow up whatever you do with alternative treatment with a Hoxsey Bio Medical. My experience with Western Medicine for my stage 4 Head and neck SCC “tonsillar cancer”, was not working, after much chemo and radiation (twice), neck dissection, etc. , my cancer continued to spread. Once I started with taking care of my body from the inside out by feeding it healthy and following the Hoxsey protocol, my cancer stopped spreading and within 9 months, I was in remission. It’s been a long painful battle, and the protocol is not much fun, but I now have been in remission for over 3 years. Personally, I believe that God granted me a miracle by putting Hoxsey in front of me, so regardless of your personal beliefs, if you want to follow the standard of care that Western Medicine offers, that is your choice, but to me Hoxsey was the insurance policy I needed. Changing your eating habits is hard to do, giving up things you love to eat is not easy, but when it comes down to eat or live, I choose to live. Their protocol is all natural, nothing that can harm you, it it teaches you how to take care of yourself better and live longer, cancer free. I’ve been going there for over 4 years. Just my story, take it or leave it, but hopefully , take something from this and help yourself to survive this dreaded disease. Blessings!

RE: tonsil cancer afraid..

by Sdurnell on Sat Jun 22, 2019 05:36 AM

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Jennie,

Chemo does not cure this cancer, but it can aid radiation by helping to shrink tumors.  No one is treated with chemo alone, but some get only radiation, or radiation after surgery, as I did.  (And some have all three, while others get surgery only.)

Is his cancer HPV positive?  If so, he has a better chance of cure than if it's caused by tobacco use and drinking. Doctors have fairly recently realized that these tumors can also be treated less aggressively sometimes and still have a good outcome. There are clinical trials being done to find out what is effective; they are trying to decrease the awful effects of radiation.

I had radiation only 8+ years ago, 25 sessions, and I was cured.  The doctors never found my primary tumor, and I had one affected lymph node that was encapsulated and surgically removed.  There are many variations in presentation that affect treatment options as well.

All the best to you and your brother, and thanks for being his help and advocate.

Susan

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