SCC at base of Tongue

rhondap45042

debbiejeanne said:

hi dave.  i was treated at

hi dave.  i was treated at the Barrett Center in cincinnati as i live in cinti.  when i had radiation, i had it done in a very small place as that is where i was refered.  i did not know about this site so therefore, i went throguh tx not knowing anything or that i had options.  i'm glad you will be more knowledgable as you take this journey.  if i can help you get through this, please let me know.  i will be praying for you and your family.

God bless you,

dj

treatments pros and cons

So we are hearing about different options and the repurcussions of such treatments.  Can everyone please tell us what treatment you had and the repurcussions and side effects of said treatments?

debbiejeanne

rhondap45042 said:

treatments pros and cons

So we are hearing about different options and the repurcussions of such treatments.  Can everyone please tell us what treatment you had and the repurcussions and side effects of said treatments?

rhonda, welcome to the

rhonda, welcome to the family.  my first dx was treated with only 35 rad tx.  that was 9/2009.  i was unable to eat for a while and my poor neck was really burned.  i used aquaphor on it and it was great.  took care of it immediately.  then in feb. 2012 i had recurrence and required a total laryngectomy.  that was 2/28/12.  my life has changed so much since that surgery as i now live very differently.  i was told originally that i didn't need chemo with the rads as that would be overkill but i wonder if i would have had the recurrence had i rec'd chemo.  so, research your options and get a second opinion if you can.  i did not have this site as i went through tx so i went through it blind.  i'm glad that you and dave will at least have the knowledge you need to help you through this.

God bless you both,

dj

rhondap45042

debbiejeanne said:

hi dave.  i was treated at

hi dave.  i was treated at the Barrett Center in cincinnati as i live in cinti.  when i had radiation, i had it done in a very small place as that is where i was refered.  i did not know about this site so therefore, i went throguh tx not knowing anything or that i had options.  i'm glad you will be more knowledgable as you take this journey.  if i can help you get through this, please let me know.  i will be praying for you and your family.

God bless you,

dj

treatments pros and cons

So we are hearing about different options and the repercussions of such treatments.  Can everyone please tell us what treatment you had and the repercussions and side effects of said treatments?

rhondap45042

debbiejeanne said:

rhonda, welcome to the

rhonda, welcome to the family.  my first dx was treated with only 35 rad tx.  that was 9/2009.  i was unable to eat for a while and my poor neck was really burned.  i used aquaphor on it and it was great.  took care of it immediately.  then in feb. 2012 i had recurrence and required a total laryngectomy.  that was 2/28/12.  my life has changed so much since that surgery as i now live very differently.  i was told originally that i didn't need chemo with the rads as that would be overkill but i wonder if i would have had the recurrence had i rec'd chemo.  so, research your options and get a second opinion if you can.  i did not have this site as i went through tx so i went through it blind.  i'm glad that you and dave will at least have the knowledge you need to help you through this.

God bless you both,

dj

Smoking

Not that it really matters, because Dave and I quit smoking day of Dx but just wondered how many in here smoked prior to Dx.  Just wondering if this kind of cancer is normally found in smokers. Not finger pointing just trying to educate myself. Dave and I have been reading about the HPV virus. Should your other get vaccinated for this or once you get it is it a done deal.

wmc

rhondap45042 said:

Pain Meds

So apparently, pain is a big issue with Dave's throat.  Dr's do not readily give out pain pills.  Just wondered what you guys all get for pain?

Rhondap45042 We take Pain pills.........

Doctors do and will if you really do need them and you have a record of never abusing them. I have to take 4 every day for neck pain and 3 muscle relaxers so I can move my nech more. I will be on both of them the rest of my life.

I will try to answer your other question about smoking. Yes I did and it is why I got this cancer. You can also get it if you never did smoke. Somking is 1st; Drinking a lot is #2; HPV about 3# Acid reflex #4 [most don't know about acid reflex and how dangerus it can be. I added to my cancer per the Dr.] And the last one is, you just did for no reason is #5.

I smoked 42 years and have stage 3 COPD, both chronic bronchitis and emphysema. I had surgery only as I would not survive radiation or surgery, unless they removed my larynx as the tumor was laying on my vocal cords.

Bill

wmc

rhondap45042 said:

treatments pros and cons

So we are hearing about different options and the repercussions of such treatments.  Can everyone please tell us what treatment you had and the repercussions and side effects of said treatments?

rhondap45042 Treatment

For me the easiest way is click on my name on the side, wmc and it will take you to my page. Go to experssions and you will see my story and photos too. I hope it will help some. You have to remember we are all different with other conditions and age as well. Heat and Neck covers so many areas and radiation can have many long lasting side effects. It also does matter where you go for treatment as they are not all the same or even close. Go to the best one you can and you will come away with much less damage. Do Not go local, unless that would be something like MD Anderson. I want 213 miles to Stanford Medical in California as for me they had the best Dr in the western states, and with my COPD I needed the best. Yes it was much harder on family and no friends could really come and see me. But it was all about ME and beating cancer and I knew I was losing my vocal cords and a neck dissection on both sides which can leave you very disfigured, if you don't get the best doctor. I still can talk and did not get disfigured and they did not mess up my sholder muceles as many other doctors have done when they cut the nerves. I was cut from ear to ear and an doing very good as well as having a strong voice which most do not have. I also thank God everyday for the strength to deal with what I had to go through and giving me a second chance on life. The doctors will tell you that this is the second worse cancer treatment you can go through. But it has good survival rates, if you give it your all and fight like hell. We are suvivors, and very proud to have everyone here as not only a friend, but they are like my extended family and I could never fine anyone better then these people. Please fell free to ask anything that I can answer or help with.

Bill  Oct 2013

Guzzle

rhondap45042 said:

Smoking

Not that it really matters, because Dave and I quit smoking day of Dx but just wondered how many in here smoked prior to Dx.  Just wondering if this kind of cancer is normally found in smokers. Not finger pointing just trying to educate myself. Dave and I have been reading about the HPV virus. Should your other get vaccinated for this or once you get it is it a done deal.

Good Luck on your Journey
Just over a year out I'm sipping red wine overlooking Atlantic in Portugal. Its doable. Love the snap Rick.

debbiejeanne

rhondap45042 said:

Smoking

Not that it really matters, because Dave and I quit smoking day of Dx but just wondered how many in here smoked prior to Dx.  Just wondering if this kind of cancer is normally found in smokers. Not finger pointing just trying to educate myself. Dave and I have been reading about the HPV virus. Should your other get vaccinated for this or once you get it is it a done deal.

rhonda, i smoked 2 pks a day

rhonda, i smoked 2 pks a day for 43 years and my cancer, larynx, is definitely from smoking.  i'm not sure about bot but i would think it could also be from smoking.  i know nothing about hpv, don't even know if i was + or not.  never even heard of it until i joined this site.  this site has been like attending cancer college for me.  you have come to the right place for information.  i wish a million times i would have known about this site when i was going through tx.

God bless you and dave.

dj

Hondo

Hi Dave

I too welcome you to CSN H&N, I lost my mother over 30 years ago to caner too, and like you said it was not a pretty site as back then all they could do was to give her chemo. But today there are a lot more they are doing with radiation and proton even chemo that makes better odds for surviving. You got the right attitude be strong, focus and keep believing you will beat it, don’t let it get you down and out.

Tim   

Dave45042

Pain Meds & Thanks

The wife is asking about pain meds because I have herniated, degenerative and arthritis in my lower and mid back both, also degenerative disk in my neck that is pressing on the spinal cord.  I have been taking percocet 7.5 for over 5 years so I have a tolerance built up and the pain from my neck when swallowing (eating) and sleeping is already getting bad, but nice to know they will take care of that.

Also wanted to thank everyone for the input, what my perception for treatment that I seen as a mountain I have found out was just a mole hill.  This treatment is like Mt Everest.  But I am glad I know, I have always been a person to expect the worst and hope for the best.  Thanks again everyone I wish everyone a easy treatment and recovery, you guys are my new family.

MrsBD

rhondap45042 said:

Smoking

Not that it really matters, because Dave and I quit smoking day of Dx but just wondered how many in here smoked prior to Dx.  Just wondering if this kind of cancer is normally found in smokers. Not finger pointing just trying to educate myself. Dave and I have been reading about the HPV virus. Should your other get vaccinated for this or once you get it is it a done deal.

Causes of H&N Cancer

According to Bill's great explanation,  I am a #5. No smoking, drinking, acid reflux, or HPV. I did teach high school independent living classes for years and part of it was talking about STDs like HPV. I just read an article that said if you are in a long-term monogamous relationship with an HPV positive person, you have already been exposed . There is not an increase in the number of spouses who get this cancer, so the cancer itself is not contagious, and some people are able to clear the virus without getting complications like oral cancer. However, HPV also causes cervical cancer, so you should be sure to have your yearly checkups. There is ongoing research into the effectiveness of the HPV vaccine, so check with your doctor for the latest information. 

Dave45042

Biopsy of tumor results

Well got good news from the biopsy today, the tumor was caught very early and it isnt in my lymph nodes its around them, still have 6 weeks or Radiation 5 times each week and Chemo treatments, but the Dr. said chances are really good that the treatments alone will work no surgery

wmc

Dave45042 said:

Biopsy of tumor results

Well got good news from the biopsy today, the tumor was caught very early and it isnt in my lymph nodes its around them, still have 6 weeks or Radiation 5 times each week and Chemo treatments, but the Dr. said chances are really good that the treatments alone will work no surgery

That is good news Dave

That is good news Dave

Duggie88

Hi Dave

You have found the right place on the web. There are plenty of fine people who can walk you through just about anything thrown your way. I had the same as you at the base of my tongue and I am cancer free 5.5 years now. I had the operation and radiation. Radiation is not an easy task but very doable. I always say if I can do it anybody can.

      Jeff

 

patricke

IT'S A JOURNEY

Hey Dave,

I had a BOT diagnosis, a while ago and so far so good.  It was a challenge, but taking it slow, one nanosecond at a time or more, and paceing myself as in running a marathon, I am oh so happy to still be here.  That is the very short version of my story.  I am very sorry to hear about the loss of your mom; loss of a loved one is always painful and never easy.  Being strong on all levels is helpful, so as they say, stay strong, and as I am want to say, Keep It Mov'in Forward.  I send you all the best mojo and all things positive to help you on your journey; You Can Do This!

PATRICK 

Carolinagal4

patricke said:

IT'S A JOURNEY

Hey Dave,

I had a BOT diagnosis, a while ago and so far so good.  It was a challenge, but taking it slow, one nanosecond at a time or more, and paceing myself as in running a marathon, I am oh so happy to still be here.  That is the very short version of my story.  I am very sorry to hear about the loss of your mom; loss of a loved one is always painful and never easy.  Being strong on all levels is helpful, so as they say, stay strong, and as I am want to say, Keep It Mov'in Forward.  I send you all the best mojo and all things positive to help you on your journey; You Can Do This!

PATRICK 

Radiation and chemo

Hi Dave,

i was diagnosed with SCC of the tongue (although not BOT) and lymph nodes on one side--I just finished a treatment plan of 35 rads plus chemo (cisplatin) a little over a week ago.  My doctor canceled the surgery because at that time, I would have had to lose so much of my tongue that quality of life would be an issue.  I now have to wait 12 weeks past the end of radiation (so 10 and a half more weeks for me) until I can have another PET scan to see if all the cancer is gone or if I still need surgery.  The good news is that we can visibly see that the radiation has worked as the tumor is no longer visible on the tongue and it was before--so hopefully I won't need surgery but if I do, chances are that it would be a smaller surgery.  For me, the treatment has been difficult but definitely doable So far.

By the way, I'm 45 and never smoked, wasn't a heavy drinker and tested negative for HPV.  That being said, the more you get used to your diagnosis, the less it matters how you got here and the more you just think about where to go from here.

this site is very helpful and you will get through this--you are young and this is a curable cancer!

 

mls351w

same as you

Dave

I had SSC BOT with  one lymph node on right side of neck affected. I was 53 years old, 5' 11", 220lbs. I went with chemo, rads, and surgery to remove the affected lymph node. No surgery on tongue, thank God. That was in 2006. I have no side effects from the illness, but I was a very healthy person before treatment started.

I can give you a lot of info on this before, during, and after treatment if you like. But, I am not a typist, so it would be better to talk with you on the phone. There is a way to send a private message from this site(if you want to exchange numbers), but I can't find it. If you can find a way to do it, I would be happy to talk to you.

By the way, the first thing you should do is start a good hygiene program. I can tell you what worked for me.

Good luck and best wishes!!

Mark S.

Dave45042

Radiation Oncologist

Had my appt with my radiation oncologist, he said its going to be 7 weeks of radiation 5 days a week, they are radiating my tumor on the base of tongue and the lymph nodes on the right side.  Next up the appt to fit my mask on 8-14-15 and an appt with the chemo therapist on 8-17-15.  They said treatments should start on or around 8-24-15, will keep everyone posted, thanks again for all the info and advise, Be Well Everyone

debbiejeanne

Dave45042 said:

Radiation Oncologist

Had my appt with my radiation oncologist, he said its going to be 7 weeks of radiation 5 days a week, they are radiating my tumor on the base of tongue and the lymph nodes on the right side.  Next up the appt to fit my mask on 8-14-15 and an appt with the chemo therapist on 8-17-15.  They said treatments should start on or around 8-24-15, will keep everyone posted, thanks again for all the info and advise, Be Well Everyone

dave, i'm glad you won't need

dave, i'm glad you won't need surgery.  one tx gets started, time will move quickly and then you'll be done.  we will be here for you as you go through tx.  if you listen, you'll hear us cheering you on from the sidelines.  we're there.  just wondering, are you being treated at the Barrett Center in Cinti?

God bless you,

dj

wmc

That's good news Dave.

That is good news that you won't need surgery. Just one day at a time and never give up. Oh, and swallow water and stay hydrated.

Bill