Hi, I'm new today. I'm a 40 year old stay at home mom with Stage 3 tongue cancer. Diagnosed 3/9/09, tongue resection and neck disection on 4/2/09. Of 34 nodes removed, 1 was positive. Started 33 IMRT treatments, but have stopped after 14 treatments. I have severe sores on tongue, gums, insides of cheeks and lips. Pain level at 10 that RO cannot control. Had patches increased to 125 mcg with NO effect, plus break-through meds. Had to stop after 14 treatments because I was at my breaking point. Now seeing a Pain Management Specialist to try to control the burning pain. RO not happy I stopped, I have missed 5 treatments now, and he says I'm at higher risk for cancer recurrence. Has anyone else out there ever stopped their treatment? Did you start back up again or just quit?

Hang in there, I am sure someone will post an answer to you uestion when the right one reads it and has the answer. Good luck Sone and you have my prayers.

GO BACK and deal with the pain!!

Are you having chemo on top of this treatment?

It was hard...it's hard for everybody but it's DOABLE.

A spot smaller then the size of a period left behind............is enough to kill you...that.....spot will contain millions of cancer cells.......

We typically don't get second chances...please go back!

The sores will all go away after the healing process starts. Treatments kill the cancer so the cancer doesn't kill us.

This is a serious decision to make...make sure this is what you want to do....I don't mean to sound harsh...But I don't want to see someone make a horrible mistake....I can't remember her name but she was a fairly young woman who didn't make it through her txs and I remember her father talking about her death...It wasn't pretty.

Again...this treatment is hard but doable...Please think this through....

Sone,

Where are you in the Midwest...I am in WI and my husband was treated at Froedtert. My husband used to lay in bed and cry before treatments, for some people the treatments are hell on earth.

I do not know of anyone who stopped their treatments as early as you did. From what I have read, you have not received a therapeutic dose yet. So, as I interpret that, it means you have gone through hell for nothing. I know it's hard...glad to hear you are working with pain management specialists and I'm glad you found this forum.

Please, please don't stop!

Sone,
Your odds of survival are very poor if you do not complete treatment. I urge you to resume immediately! You can do this. It's miserable - it's no walk in the park but it beats death and leaving your kids without a mother.

You won't get any replies from people who stopped treatment - they're all dead.

Your pain management crieria is not acceptable, it is a basic patient right to have pain managed and your MO should be the PCP for this - not your RO. You can have a LOT more Fentanyl than you are getting (up to 500 mcg (but we have never seen anyone here need that much Fentanyl). Remember that it takes 24 hours for a patch or an increase in patch strength to reach a therpaeutic level, so you won't see an immediate change. Once the correct level is found, the residual level will tide you over while the patches are replaced every 72 hrs (some physicians replace them every 48 hrs). Please follow your doctors instructions explicitly on dose rates. Read carefully all of the instructions that come with the patch - they can be very dangerous if not used exactly as prescribed. If you have small children or animals, be careful to follow the disposal directions.

"Swish & Spit" topical pain relief and stronger breakthrough meds (like Morphine - which is the fastest acting) should give you immediate relief.

Your pain is supposed to managed to a "3" on the pain scale, worst case. Demand better pain management and describe your pain to them using the number system that they use.

PLease try to find some help for the pain issues. Don't quit. During my 4th and 5th week, I had problems with mouth sores and the RAD DR worked with me to get relief for the pain. Yesterday I completed the last of my 39 treatments. Hang in there, you can do it. Just take it one day at a time and before you know it, it will all be history.
Look at the choices, work on getting pain relief or the unknown? Please hang in there this is the cite to get support!

Sone, welcome to OCF. I completely understand your reasons for quitting radiation. I had felt just like you did while I was going thru it. Radiation can be so difficult. The mouth sores are terrible. I wanted to quit and even told my son and the nurses I was going to stop. The nurses along with my nutritionist, rad doctor and my son convinced me to finish. If I had quit, I dont think I would be here right now.

Have you been given magic mouthwash? That can help tremendously to ease your sore mouth. Also rinsing with baking soda/water/salt mixture helps too. If the salt bothers your mouth, omit or cut it back.

I beg you to continue. Please think of the bigger picture and fast forward yoruself to Thanksgiving. That is what helped me get thru. I made goals by the holidays. I started rad and chemo in Aug and my goal was to have Thanksgiving dinner with my family. Since you have children, maybe celebrating Halloween or taking them to the pumpkin patch and a hay ride would be a nice thought to help push thru this. Since you are a mother, we know you are not selfish. Yet this decision is not fair to your children.


Please go back to radiation immediately. This is something to hit hard once and be done with it so you can move on with your life. Your children need you to be well. If not for yourself, do this for your family.

The survivors of this board and their caregivers all know exactly what you are going thru. Ive been there too and it really can be done. I spent many days in the hospital due to having a difficult time. I know full well how bad this can be. Please reconsider your options.

Best of luck with everything you decide.

Wow, such harsh words. I was wanting hope and support here, but words such as these just crushed it. Saying I won't find anyone out there who stopped because they are all dead, and just deal with it, is heartless. When someone is at their pain limit, asking them to take more is torture. I didn't respond to the Fentanyl at all, and I'm allergic to morphine. I have all the other stuff, "swish and swallow", caphosol, salt/baking soda rinse, viscous lidocaine, humidifier, etc. NOTHING lessened the burning pain.

Of course I understand the gravity of the situation. I anguish over this daily, feeling guilty because I do not want my children to grow up without their Mom. The RO words that I'm increasing my chances of recurrence with a break in treatment haunt me every hour of every day. I'm looking for someone who maybe had the same experience as me and lived to share it. Is there ANYONE out there who broke their treatments?

Sone I understand how beat down you are but no one is playing with your mind here. It is soo important that you really really try to finish ..Bob was originally given the choice of watch and wait or Rads ...to make the descision since it was a choice? We got several opinions and of course were mostly hoping that it would wiegh on watch and wait ..DID NOT HAPPEN what we learned is what was said ..one microscopic missed cancer cell spells reoccurrence NO IFS NO BUTS....
Yes Treatment Totally Sucked!! and
He is now facing a major free flap jaw surgery this week 5 years out due to damage from the Rads but IT AIN"T CANCER !! and is survivable no matter the outcome.

Bob was treated in the same time frame began radiation in July and Yes on thanksgiving as a goal !! Bobs first realization that it was getting better was Thanksgiving dinner!! There has to be something that will make you comfortable or just plain knock you out for a bit to make you comfortable for at least a few hours of relief!! better your family deals with you out of the loop and loopy now than facing a possible way worse scenario in the future USE WHATEVER RESOURCES YOU HAVE TO DO THIS ONLY ONCE!!

Sone,
it was NEVER my intent to be heartless but my MO told me that the survival rate is dismal for people who don't complete treatment (and I never said for you to "deal with it"). If you want us to tell you that you're going to be ok we would have to lie to you and that's not what we do here. I told you this out of love - not to crush you, but to offer support and resources to advocate for yourself, find solutions for your current pain issues and get you back into treatment and survival.

Do you have any idea how crushed we are when we lose another forum member? I have seen too many deaths over the years - and many of these were people who hit it with all they had. A little piece of me dies every time that happens. Not long ago we had 6 deaths in one week. I have to take regular breaks to protect my sanity.

It is a fact that all of the persons who were unable to complete treatment ended up in hospice and died. I can't change that and it's against my personal ethics to "blue sky" anyone. This is a ruthless, relentless and unforgiving disease. Very few people get second chances so you have to hit it hard. Some people who come here need a kick in the ass to get them back into treatment - if you want to call me "heartless" for trying to save your life I'll accept that.

PLEASE get back into treatment!