Cancer treatment what should i expect

joe m · February 2021

new to this board and treatment for cancer in my neck and back of my tongue.The doctor at the VA(which iam very please with) said i need a feeding tube and a med port put in and i need to have all my teeths pull.Iam looking at to 6 to 8 weeks of chemo and radiation all this scare the hell out of me and dont have any idea of what iam in store for so i looking for any help from this board and people on it.look forward to hearing from you

MarineE5 · February 2021

Joe M,

I am sorry you are here seeking answers to your questions, but I am glad you found this site. There are many knowledgeable people here that have traveled the road you are about to take. Lean on them for support, vent when you need to as we are good listeners.

I had surgery for my Base of Tongue cancer followed up by 30 Radiation treatments so I am not able to help with your Chemo questions. Radiation can be rough as we get sores in our mouths but the Doctor(s) can give you Medicines to help with any discomfort you may have.

As far as having all of your teeth removed. I was borderline on having all of them removed or doing Fluoride treatments for the rest of my life. I wanted to keep my teeth and the Cancer Dentist agreed I should try. Some Doctors are in favor of removing them all at the beginning as some people don't put the effort in to keep them. Radiation can cause damage to our Saliva glands which helps protect our teeth.

With the Radiation, you will be fitted with a Mask and go thru daily Radiation for several weeks.

Yes, this all can un-nerve anyone, but you will get thru this. There are several members here that have recently completed their treatments so they will be a great source of information for you since things have changed since 2004/5 when I did mine.

Thank you for your Service to our Country. My Best to You and Everyone Here

Remington25 · February 2021

Please get multiple opinions.

Please get multiple opinions. Depending on the type, you really may want to see a cancer center that deals with your specific type. I consulted with Mayo Clinic, MD Anderson and ultimately went with a cancer center 3 hours away as they had the ability to utilize the same treatment trial that Mayo Clinic developed for my cancer. This will be a difficult road that you will get through, but in my case, I was fortunate to need about 1/2 the radiation and only 2 lighter doses of chemo which the feel will give me a greater long term life with less side affects potentially. I am only 3 weeks out of treatment and I feel pretty good. No taste buds and very little to no saliva still but I haven't had any pain medication for a week already! My life is different from the surgery but I am very fortunate so far! As I said, please get multiple opinions becuase there are different treatmnet options for certain cancers. If you dont mind, what is yours? It's likely a member here can help guide you........

CivilMatt · February 2021

If you were me or if I was you?? whatever!!

Joe m,

Welcome to the H&N forum I am sorry that you are here but, let’s see if we can stear you towards some good choices ALL the members reading this know that you will have many choices to make in the coming days, months and years.

First off, I see that MarineE5 has poked his head in and offered his always good advice. As I remember, H&N members can catch MarineE5 in the chatroom of the CSN website. Anyway, good information from him.

As for me, I had stage IVa SCC, BOT, 1 lymph node, HPV+ (surgery, rads and Erbitux), I did not have any of my teeth removed but it was mentioned by rad oncologist during an early visit and she required a person-to-person chat (by phone) with my dentist. All went well, I still have all the teeth I stared this “whole life changing” event (November 11, 2009, only a single lump on left side of neck, NO pain whatsoever).

The issue to have a PEG or not have a PEG is one of the most controversial issues to hit the H&N forum. I had 2 of them. The first one was a very bad one, it never worked correctly, it was the most painful pain I have ever felt while trying to use it, it brought tears to my eyes. The second one I got almost immediately after the first one. The second one was great and always worked, had no pain associated with it and I would hang my food bags high and go to sleep. SIDE NOTE: I always drank or ate one meal a day and I drank around 10 or 12 glasses of water a day. Drinking lots of water or other fluids is very important. I credit the H&N forum 2009-2010 with that convincing piece of advice. If you go PEGless that you have got to consume all calories by mouth, YOU must!!

I have not been on here offering written support like I used to do almost religiously. I did consult my records for my responses to previous H&N members and I came up with the following numbers:

Teeth – 149 times

Tongues – 364 times

PEG tubes – 101 times

PEGS – 292 times

Feeding tubes – 81 times

Scared – 59 times

Welcome – 586 times

There you go, you just got “all that CivilMatt has to give” on a blustery, rainy and sometimes sunny day in the Willamette Valley, Oregon. The best of luck to you joe m. You will be ok, many have traveled this same road and we know what you are going through and we can predict with great accuracy what will happen to you. Remington25was spot on to suggest you get multiple opinions.

Bye,

CM

CivilMatt · February 2021

DOUBLE POST (kind of)

I am going to have to turn in my H&N Membership if I keep this up.

ByeByeCancer · February 2021

I recommend getting a 2nd opinion...

Hi, sorry you are finding yourself here but glad you have found this forum to use as a resource! My husband was diagnosed in Fall of 2017 with stage IVA squamous cell carcinoma on the base of his tongue. His was HPV +. The oncologist recommended a Port and PEG placement before beginning treatment. The port was necessary for the Erbitux infusions, but I researched the PEG (yes, it is indeed a controversial issue) and had some questions. We spoke with the physician who would be placing the PEG and he told us he could place the PEG tube in at any time during treatment and suggested my husband start treatment without it. It was reassuring to know that the option could be used later in treatment, if needed. We had a 2nd opinion from a specialist in San Antonio (we live in Austin) and their treatment plan was identical to the first oncologist's plan so we felt good about that. My husband has no regrets over not getting the PEG. He was on liquids for a few weeks. I added Benecalorie to every smoothie and that was a lifesaver in keeping his calories up. My husband also forced himself to go to work every day, if even for a couple of hours to help keep up some normalcy. I swear staying active helped him....stay active if that makes sense. Every cancer is different and every person is different, but it is always a good idea to get a 2nd opinion so you won't second guess things down the road.

Also, hang in there. You will get through this! My husband is cancer-free now for over 3 years and besides some occasional mouth dryness when eating breads, he is living a very normal life.

joe m · February 2021

Thanks allgood advice

You all been very helpful with your advice and I feel pretty confident with the VA I beleive Iam be getting the best of care as possable plus it help when you live less than a mile from biggest military hospital in florida.To tell the truth Iam going be in a study for a new drug to stop mouth sore which iam glady agree to. Well today they put in a med port so they don't have to stick me with needles all the time and tear up my arm which i feel is a good thing,then next week i be getting fitted for my mask next week and be starting treatment by the end of month,Iam ready.But iam still looking at getting all my teeth pull by the advice of the dentist.They say with my type of cancer i would be losing half of them and not sure they can save the rest.i just have to deal with

THanks all for advice and keep it coming

joe m · February 2021

ByeByeCancer said:
I recommend getting a 2nd opinion...
Hi, sorry you are finding yourself here but glad you have found this forum to use as a resource! My husband was diagnosed in Fall of 2017 with stage IVA squamous cell carcinoma on the base of his tongue. His was HPV +. The oncologist recommended a Port and PEG placement before beginning treatment. The port was necessary for the Erbitux infusions, but I researched the PEG (yes, it is indeed a controversial issue) and had some questions. We spoke with the physician who would be placing the PEG and he told us he could place the PEG tube in at any time during treatment and suggested my husband start treatment without it. It was reassuring to know that the option could be used later in treatment, if needed. We had a 2nd opinion from a specialist in San Antonio (we live in Austin) and their treatment plan was identical to the first oncologist's plan so we felt good about that. My husband has no regrets over not getting the PEG. He was on liquids for a few weeks. I added Benecalorie to every smoothie and that was a lifesaver in keeping his calories up. My husband also forced himself to go to work every day, if even for a couple of hours to help keep up some normalcy. I swear staying active helped him....stay active if that makes sense. Every cancer is different and every person is different, but it is always a good idea to get a 2nd opinion so you won't second guess things down the road.

Also, hang in there. You will get through this! My husband is cancer-free now for over 3 years and besides some occasional mouth dryness when eating breads, he is living a very normal life.

peg tube

I will ask the doc about the peg tube if i can live without i i will try.Thats for the good advice

pofindsm · February 2021

Peg Tube

Let me first say I know you have LOTS of questions! I had head and neck cancer. I remember to this day meeting with my doctors and them telling me of all the things that absolutely would happen during my treatment and that scared the hell out of me. Then they went on to tell me of all the things that could happen. It almost brought me to tears. I knew I had a challenge ahead of me. They did recomment the peg tube, and it was a life saver for me. I was so weak that I went for weeks with nothing being consumed by mouth. Even drinking water was difficult. I had 7 weeks of radiation and 3 rounds of chemo. They removed 20% of my tounge to start with. Then the radiation to treat the throat cancer and the lymphnodes in my neck.

I did not have all my teeth pulled and I am now working at retoring my teeth. The radiation for me destroyed my saliva glands. Saliva is important for oral health.

I absolutely recommend getting the port. I didn't and it was a huge mistake.

I'm happy to answer new questions as they come up, I'm sure you will have more.

Let me close with this. At my lowest point physically and mentally I openly told my loved ones if my cancer came back I was just going to die. There was no way I could go through this again! I'm am cancer free today. Have been for 3 years. And if my cancer came back I would do it all over again.

It will be challenging. I'm an old man..., if I can do it anyone can.

I wish you the best of luck.

pofindsm · February 2021

Peg Tube

I should have added. The benefit of getting the peg tube to start with is you are stronger now than you will be if you need it later. By the time I figured out that I really needed it I have become very weak and another surgery would have been very challenging.

You can do this...

Remington25 · February 2021

I had a surgury where they took a small portion of my tongue, my entire soft palate and "stuffed the hole" with cheek fat and built a ramp, then did a radical neck dissection where they removed my large lump and an addtional 20 or so lymph nodes. My radaition/chemo was less but I still had severe pain for 10 days (better than the docs expected) HOWEVER there were times after my surgury and in the first 10 days following my treatments, that I didn't think I would make it........... When I would be at my witts end, I would feel 10% better the next day. Not a tone but it was noticeable and it really changed my attitude which got me to consume more calories/protein. It will be a mental struggle and I would be glad to visit anytime you need. I wasn't able to open my mouth more than for a straw for 5-6 days so if you want to be pen pals, let me know. So many people on this forum gave me hope (many from me just reading old threads) and I wonderful guy communicate with me prior to my journey (SuperhumanHPV website) that really gave me hope so I'd love to help others as well. You can do this! It will be hard, but YOU CAN DO THIS!

motorcycleguy · February 2021

Joe,

I'm sorry to hear about your diagnosis. It's always tough to hear that. I remember the fear I had .. which has been almost 2 years, now!

I personally never used my feeding tube, but I seem to have been the exception, not the rule. You are probably better with it. A Med port seems like a big deal, but it's not really so bad, once you get used to it. (You may have already gotten one or both of them, at this point.)

Cancer treatment can certainly be a challenge; I won't lie to you. The secret to success seems to be a good support team (wife? girlfriend? relatives? friends?), good nutrition, lots of rest when you need it, and a positive attitude.

The people on here are proof that one can get beyond this, become a survivor, and then help others through the process.

I wish you the best possible outcome!

Hang in there,

mg

joe m · February 2021

pofindsm said:
Peg Tube
Let me first say I know you have LOTS of questions! I had head and neck cancer. I remember to this day meeting with my doctors and them telling me of all the things that absolutely would happen during my treatment and that scared the hell out of me. Then they went on to tell me of all the things that could happen. It almost brought me to tears. I knew I had a challenge ahead of me. They did recomment the peg tube, and it was a life saver for me. I was so weak that I went for weeks with nothing being consumed by mouth. Even drinking water was difficult. I had 7 weeks of radiation and 3 rounds of chemo. They removed 20% of my tounge to start with. Then the radiation to treat the throat cancer and the lymphnodes in my neck.

I did not have all my teeth pulled and I am now working at retoring my teeth. The radiation for me destroyed my saliva glands. Saliva is important for oral health.

I absolutely recommend getting the port. I didn't and it was a huge mistake.

I'm happy to answer new questions as they come up, I'm sure you will have more.

Let me close with this. At my lowest point physically and mentally I openly told my loved ones if my cancer came back I was just going to die. There was no way I could go through this again! I'm am cancer free today. Have been for 3 years. And if my cancer came back I would do it all over again.

It will be challenging. I'm an old man..., if I can do it anyone can.

I wish you the best of luck.

peg tube

Thanks for the words of encouragement I do feel better after readin your input I know i have a long and hard road ahead but in the long term i beleave outcome will be worth it.Just overwheleming at times.so as it stands now i had the medi port put in but they only use it for chemo not blood or anything else.i guess you have to be train in use.Next is the feeding tube and mask for radiation so looking at starting treatmen by the end of the month early march.Yes they are pulling all my teeths,I think they rather pull them all then mess with them later.

my question now when did you start feeling nauseous and is it overwhelming they did give me medication.Do you take it daily or as needed,is it the chemo or radiation that make you sick.

Thanks for your help

joe m · February 2021

Remington25 said:
I had a surgury where they took a small portion of my tongue, my entire soft palate and "stuffed the hole" with cheek fat and built a ramp, then did a radical neck dissection where they removed my large lump and an addtional 20 or so lymph nodes. My radaition/chemo was less but I still had severe pain for 10 days (better than the docs expected) HOWEVER there were times after my surgury and in the first 10 days following my treatments, that I didn't think I would make it........... When I would be at my witts end, I would feel 10% better the next day. Not a tone but it was noticeable and it really changed my attitude which got me to consume more calories/protein. It will be a mental struggle and I would be glad to visit anytime you need. I wasn't able to open my mouth more than for a straw for 5-6 days so if you want to be pen pals, let me know. So many people on this forum gave me hope (many from me just reading old threads) and I wonderful guy communicate with me prior to my journey (SuperhumanHPV website) that really gave me hope so I'd love to help others as well. You can do this! It will be hard, but YOU CAN DO THIS!

pen pals

yes i would like to pen pals

wbcgaruss · February 2021

Since Remington25 Mentioned PenPals

Being penpals with folks so I thought I would mention here once again how to contact folks on this forum by CSN Private messaging---this comes directly from the CSN help section---

Send Private Message

Click on the members name on the post to the left side which is either by itself or underneath their picture.

This will take you to their member page.

Click on “contact user”

Type your message and enter the CAPTCHA code and click send message.

Another Way

CSN E-mail

Registered CSN members may send and receive messages from other users through the CSN internal messaging system. The system allows members to contact each other while protecting their actual email address. Messages can be accessed via your CSN home page.

To send a new message using the Send a Message form:

Log on to your CSN account at www.cancer.org/csn using your username and password; you will be directed to the CSN Home page.
From the Home page, click on "CSN Email" located around the center of the blue box labeled "Connect and Communicate."
On the next page, click on "Write a new message"
Type the CSN screen name of the member you wish to contact on the "to" field. Or, select the name of the member you wish to contact from the “My Friends” dropdown list.
Type your subject line and your message.
Click on "Send Private Message"

Remington25 · February 2021

Write me anytime

If you want, I can share my cell or work email once you get a hold of me on here. I don't want to just put it out there.

wbcgaruss · February 2021

Remington25 said:
Write me anytime
If you want, I can share my cell or work email once you get a hold of me on here. I don't want to just put it out there.

You Don't Want To

Post your email or phone numbers on the forum or on any open place on the internet and on here if someone puts their email in a posting the admins will take it down as they do an excellent job of monitoring these forums. If you want to share info with someone use the private message system on CSN directions below---