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!

I second what Gary said. This is a cruel, aggressive cancer and in order to try to beat it you have to hit it with your best shot. I have been on this forum for a number of years and have yet to hear words that were delivered with a heartless purpose. Everyone here has only YOUR best interests at heart.

See the pain people - surely there is SOMETHING out there that they can give you to get you through the time needed to complete the treatments. I have heard that in certain circumstances - for people that are allergic to many of the common meds - drugs such as heroin (administered in a controlled environemnt) were just the ticket. Keep all avenues of pain meds open and please, please, do whatever it takes to get back into treatment. The streets of heaven are far too full of our OCF Angels.

Keep posting.

Donna

In Europe you can get medical grade heroin. In the US they can give you methadone which works very well I am told. But Fentanyl is 100X stronger. 125 mcg is on the low side.

If she is allergic to morphine then she is allergic to heroin as well as they come from the same source.

See this link for NCCN adult cancer pain management guidelines http://www.nccn.org/professionals/physician_gls/PDF/pain.pdf

Hey sone
the very first post i put on theses boards over two years ago was answered by a man i love dearly called david.I had asked what to expect from radiotherapy and boy...did he tell me.I was devastated,but once i had recovered from the shock i set about making sure i was ready to help Rob in every sense of the word.Nothing caught me out or came as a shock,and i had everything covered.what i didn't have covered was how quickly he would fall.We had been told he should get through to week three or four before he got sick...he got through to DAY three!!!

I posted then "can it only be day three?".He was burnt outside and inside he had sloughing green mouth sores,a burn line down his tongue,weeping blisters on his neck,he couldn't eat or drink,he lost pounds in days,and had to have an emergency peg fitted.Every day we went for treatment i demanded a consultation with the oncology registrar and he tweeked and tweeked his meds until at last they found a combo that did the trick.He had thrush in his mouth that increased the pain to unbelievable levels,but gradually between the hospital and the fantastic people on these boards he got to a place where he could just about bear it.Of course he had no one to worry about except himself(no kids) and i did everything for him.all he had to do was get in the car every day.No one here wants to be unkind sone but by the same token this is no fuzzy lovey forum.We deal in the hard facts of Oral Cancer ...its not pretty and not to be messed with.Who is caring for you sone?do you have a good support network,and if you don't can this be remedied?If you have a chief caregiver,get them to join the forum and learn what they need to know to help you get back on track and finish this damn treatment.There are so many drugs out there to make this experience more manageable,but they may not allow you to be a mum for a few weeks,but whats a few weeks out of your potential lifetime?Rob had old fashioned rads not imrt which wasn't so widely used in the UK and is much harder to take,and he had red hair and pale skin which gary told me was also made things a bit harder than most.He never even wanted to start the treatment let alone stop in the middle,but against all the odds he did it and so can you.

My kitchen looked like a pharmacy and i had a spread sheet schedule to follow all the different meds rob was on.sometimes he would take a couple of doses and then refused to take any more as they made him feel bad,but much as i loved him,i was a bully and i put his meds down his peg so sometimes he didnt even know(or care) what i was giving him.Often its the simplest things that work and Rob found the baking soda and salt swish invaluable,along with nystatin for the thrush,mucodyne mouth wash(topical analgesia)soluble paracetamol.voltarol anti inflammatory,fentanyl patches,liquid morphine,omeprazole to protect his stomach,aqeous cream for his neck,anti constipation liquids,and so on and on and on.

No one wants to be harsh Sone but tough love is much talked about here and sometimes unpleasant truths need to be told.some people on theses boards have had to take very short break form treatment because they have got so sick with dehydration and pain,but they all have to go back as soon as they can and finish this..... there only chance of survival.

Pleas get some help and then get back on the horse and see it through

love

Liz, everytime I read your posts about what Rob and you went thru together, I get all choked up and teary eyed. You are quite the lady for what you have been thru and very helpful to all. Thanks for being there.

Sone - You can do this! Listen to what everybody says -- some of which sounds harsh, I know -- and remember what Nietzsche said, "If it does not kill me, it will only make me stronger." Treatment will not kill you (cancer will) -- remember childbirth?? Remember how much you wanted your children and the pain you went through to have them...and now you will have to go through more pain to keep them, but it's worth it!

Everybody on this forum speaks from experience and a place of love and compassion. They all want you to GO BACK - find the pain meds that adequately control your level of pain, no matter how many times you feel like you have to ask for more.

I'm a mom, too -- two wonderful teens who are worried sick about me. I will be starting radiation in about a week, and am trying to prepare myself for the worst (and hoping for better than that). I will be thinking about you and your kids as I go through my treatments -- hoping you will be doing your treatments, too! We can be partners in radiation -- I'll send good vibes your way!

Hang in there. I know you can do it.

Sone, BTW I'm sure you're not the only one who has stopped treatments -- someone is certain to answer that question soon, they just haven't read your post yet.

Know that you are never alone once you come to this site; we are all here to keep each other company and support one another through these hard times.

sone

no lectures, just sorry to hear that the radiation was too much for you. I respect your wish to hear from someone who stopped radiation early and lived. Unlike chris, I do not expect that you will ever get what you so desperately need and want: confirmation that you don't need the IMRT.
There are over 6000 registered members so you can do the math yourself if no one ever answers your plea. The fact is that everyone who is still alive to post regularly did finish their radiation. The only comfort I can hold out is that finishing the radiation is not a guarantee that you would have beat this cancer. Perhaps you will survive and then can offer hope in the future to someone else. Obviously though, not one of us thinks that is realistic just magical thinking. Instead, our collective experience is "heartless" reality. I have done massive radiation twice now and this second time around has just wrung me dry and left me totally drained and exhausted. Sorry it has been too much for you. Finally, if you can get your pain under control, it will not be too late to resume IMRT. One woman caregiver here had her husband stop IMRT and announced he was cured and that all of us should just go organic and eat raw food etc,. She got hammered here on the board so hard that if her husband is still alive, I cannot believe that she would not be back posting here and demanding that we all eat crow. Sadly, after announcing so loudly that stopping radiation was the cure, we have never heard from her again.
Again, good luck and I hope you are the exception that proves the rule.
charm

Sone,

Please don't give up. I did not have radiation so I don't know what you are going through. I do know many people here have gone through this torture and with the support of everyone here they made it. Please continue to post and let us help you through this hard time.

Charm -

I didn't mean that Sone will find someone who stopped completely -- it's clear that you don't live if you do that...But I do think there must be someone who stopped BRIEFLY out of desperation and then continued to completion and success! I can't imagine there isn't one single person out there who gave up for a day or a few days and then returned to it. Sone is evidence that that can happen...

Just wanted to clarify my words...

Sone,

I did not mean to sound heartless when I told you to go back and deal with the pain...But, that's what we all did...WE dealt with the pain one way or the other...There is no other way to do it...IT SUCKS and we all know this because we have all been there...Some of us have been there more then once.

If you had surgery to remove part of your tongue or whatever then had a "x" amount of nodes removed with all great big gigantic clean margins then I would have taken another approach...But, that is not your case...Correct me if I'm wrong but you did have a positive node..Correct?

Sone, it's imperative that you go back to finish treatment...I spent days in the hospital because of it...I felt like I was going to die...There is a big difference to feel like I was going to die compared to really doing it...Get my drift?

I wish I was more intelligent and compassionate to say the right words to get you back in that room..But I'm not that way...I'm blunt...at times stupid...and sometimes I'm just not right in the head!

So...I apolgize and I am sorry that this is hard for you...But can you please go back and finish treatment...Pretty please with a big fat cherry on top go back...

When you're all done and healed...I'll let you smack me in the noggin.

I do know a couple of people that stopped and resumed tx...They're here...but I don't know anyone who stopped and lived to pass on their experiences...I'm sorry.

I don't know how else to say it...But everyone here cares for the other....Please go back.

Ray,

You are very intellignet and very compassionate. Your passion about Sone going back shows that. You know how hard it is and provide much needed support to those of us here.

If I ever need radiation, which my doc said I may in the future...I will be coming to you for support:) And to whip my butt in gear!!

Sone, I am so, so sorry that you are going through this and things are beyond brutal. My husband's pain, mucus production, loss of voice and fatigue all peaked around the 3rd week of radiation. My husband didn't want to know ANYTHING about the side effects of treatments going into this and said he would just take things as they came. He was convinced that he would drive himself to treatments and certainly not need the feeding tube put in. Week 3 the shit hit the fan and he was literally knocked on his ass. BUT....the pain and side effects didn't get any worse they were just the same.

PLEASE, PLEASE go back to treatments. I know you are scared and probably feeling very desperate. Your children need you. My husband looked at me one day during his treatment and said "I'm only continuing this because of you". I said GREAT because I need you.

My husband has already told me that if the cancer is not gone or comes back he is done with treatments, no more chemo, no more radiation. That scares me to death and I pray every day that we beat this because I know he is serious. BUT....I am thankful that he toughed it out and did everything possible to beat this from the start. Please go back and talk to your MO not your RO. Our MO was our number 1 go to person for the terible, debilitating side effects. I'll keep you in my prayers. Hugs, Wanda

Sone, do you think you have heard enough about your quitting?? Better go back and finish it and live a long life for your family. I AM SURE THEY WILL BE GALD TO PUT UP WITH COMPLAINING OR RHATEVER YOU DO BUT I ALSO BET IT MAKES THEM VERY Happy to have you there to complain. Go for the gold and live.

I fear that she hasn't been back to read these posts. Some of you may wish to pm her.

I thought that too Gary. I did send her a PM but have not heard back.

OK. I finished treatment #15 today.

Thanks for your "encouragement", or at the very least, passion. The new pain meds are working to relieve the unbearable pain. Now I'm just left with the wretched pain. I hope I can make it throught the next 18. My mouth burned the entire time the radiation was zapping me today.

I still would like to hear from someone else who stopped their treatments and restarted. Anyone?

Sone,

WAY TO GO!!...

Take it one day at a time and go to your doctor with every little concern.

Just by chance do you have a lot of fillings in your teeth? Maybe, everything is bouncing off of your fillings and burning your mouth a little earlier then normal.

Btw, my mouth was a mess.

Keep on stretching that mouth/tongue and rinse your mouth all day long with that magic mouthwash...

If you don't have any...get some from your doctor.

Good luck and before you know it you'll be finished.

Sone,
they can increase your Fentanyl, but only 25mcg at a time. Keep letting them know that your pain threshold is still too high. Give the current dose time to work (24 hours) if they upped your Fentanyl. They can also increase your breakthrough meds in the meantime. It's a balancing act between the breakthrough meds and the long term meds so always let the pain managment team your dose rates, especially your breakthrough pain meds. Some doctors really need to be pushed on this.

A week off shouldn't make a difference. Some us us had a week off to recoup and others because of machine breakdowns. Essentially they have to give you the radiation, roughly all at the same time, for it to be most effective. This is the reason your RO was upset (which is a good thing because that means you have a strong chance for surviving this).

If you are using a saline rinse you want to stop. Even the smallest amount of salt can burn like crazy. The acidity in fruit can also burn. Do you have a PEG?

I am SO releived that you restarted treatment! Please keep us informed.

Sone,

I recall some people having to stop for a week due to side effects, etc. and then re-starting. My husband said there were times when he wanted to stop as well. In addition to everything everyone else has said, even a mild case of thrush can make your mouth burn terribly and can keep the pain killers from doing their work. My husband has dealt with that post-treatment several times as well. If you aren't already on a daily thrush medicine - ask about that asap(need 2 weeks or more of treatment to get rid of the thrush and in my husband's case - he took something for quite a few weeks). The burning is often a sign of that.

I cannot imagine going through this treatment after watching my husband and others go through it but I would do everything to try to do so because there is a better life at the end of it. Are you getting a lot of support and help at home and from friends? Your "job" right now should be just to focus on yourself and getting through this. My husband was not able to do much of anything for many of the weeks of treatment and really relied on others to drive him, help him with his medications and peg. It was all he could do to put one foot in front of the other and get dressed and go through treatment for several weeks.

My thoughts are with you- Sophie

Chiming in with Sophie I was on a maintenance dose of Diflucan for months during treatment. The thrush started when the Zerostomia (dry mouth) kicked in, at about mid treatment. Any change in the pH in your mouth can start it. At one point I was taking 400 mg/day.

Well Sone - you just made my day!! I was so worried about you stopping treatment. Just think to yourself that each one you get through is one less you have to get through.

Don't be "strong" or "suffer in silence". Grab ahold of pain meds until they work. Even if you basically sleep through the next 18 - that would work too! The important thing would be that you got through them.

Going back - feeling as you did - could not have been easy and I applaud you! Congrats. Post ever day and let us know how it is going. We're here FOR you!

Donna

Congrats on going back. Thats the spirit, I am so happy to see you trying again. Cancer and its treatment is just plain awful!!!! Without treatments you wont make it.

Do the best you can and go everyday. Its what it takes to beat this. Now you can proudly say you have gone thru 15. Day by day, hour by hour if necessary, just keep going and get it over with.

Please lean on us if you need to, just dont quit.

I think I missed 1 day of radiation due to being so sick. I had to make it up at the end.

Best of luck with your continued treatments.

My treatment was stopped for about a week (after the first few treatments). Upon inserting the PEG they saw (or though so) additional suspect areas. This meant that they had to redo the calculation and increase the irradiated volume. There were also other issues at that time......
I suggest you watch out for thrush, and consider using viscous lidocaine for short time relief...

Best

M

Hurray for you Sone! I'm so relieved you went back, I have been worried about you!

Treament #16 finished. 17 to go.

You all are so concerned about a total stranger. That's just amazing to me.

I have lots of experience with Thrush, I'm pretty confident I don't have it right now. The Magic Mouth Wash, or swish and swallow, or GI cocktail, whatever you want to call it, has Nystatin as one of its ingredients. Some of you are talking about Diflucan, which I've taken in the past, as a maintenance dose. Do I need to ask for that prescription now, before I get thrush, or do I have to wait to get the Diflucan until I come down with the Thrush? And is that in addition to the Nystatin that's in the swish and swallow?

The burning pain I have is inside the left side of my tongue (the side being radiated). It's also in my cheeks and lips. My cheeks are so swollen I look like a chipmunk. And heat just emanates from them. Sometimes I put a cold cloth on my left cheek just to remove some of the heat and try to reduce the swelling. Is there a better way to remove the heat, swelling, and burning pain?

I don't have a PEG. Got very close to getting one last week, but once the new pain meds started working, I was able to get in 4 ensure pluses a day. That is maintaining my weight for now--I'm only 108 pounds. Now that I've returned to treatments, my lower throat (base of neck area) is very sore inside. I drink cool water, but nothing but the swish and swallow soothes it, and that doesn't last long. I'm up every hour or so during the night rinsing the mucous and slime out of my mouth and then drinking the swish and swallow for relief. It's a tough way to get a night's sleep, but the Lyrica helps me get back to sleep now, whereas I used to just stay awake. I do use the viscous lidocaine lots too--I put it all over the sores on my tongue and inside of my cheeks and lips before I drink so that I can get it down. It doesn't last long either. I guess this is all normal for this awful treatment. Luckily, the pain management specialist agreed to see me each week throughout my treatments, so I can ask for stronger meds each week as I need them. It hurts more every day. I just hope I can make it!

Sone

Good job!!!!

Pat yourself on the back for everyday you go to treatment! Its one step closer to being cured.

You would get the meds if you get thrush. Not everybody gets it, Ive had it a few times soe have a standing refill at the pharmacy.

You are not a total stranger. We are a group of cancer survivors and their caregivers who have a common goal. Beating this awful disease. We welcome you to our little family. We support each other and help when we can. I have met in person many wonderful members of this board and am proud to call them my friends. Even some people that I have not yet met are still my close friends.

Keep up the good work and be proud of yourself. You have overcame a big obstacle to keep going.

Oh Sone you brought my tears to my eyes!! I am just so thrilled that you went back to treatment. We are a family here and we help each other through hard times. You can do it and we are here for you. Keep up the good work and just take it one day at a time.

Please keep us posted with how you are doing.

xoxo

Honey- I am so sorry you are in so much unbearable pain. Everyone's physical reaction to these treatments is different. Some people do in fact have a terrible reaction to the radiation. I do hope that maybe a break will give you some relief enough to go back and finish it. It is important. I am so sorry you aren't getting the support you were anticipating here.

I had tongue cancer too. I know its an awful thing to go through.

I think everyone was just looking out for you because they want the best result for you.

Think positive and please consider finishing if you can.

XOXOXOXO

KATE

Whoot!! Whoot!! Tomorrow you will be over the 1/2 way mark...you can do this Sone!! We all believe in you. And, we're so happy you are finally starting to get some pain relief! Glad to know you will be staying in touch with the pain specialist!

I remember my mid-way point...You keep toughing it out Sone!

And don't forget to stretch that mouth, it will help in the long run.

If you want extra calories try some Carnation VHC that can be purchased through Amazon. It has 560 calories in a very small 8 oz can.

Just keep on using that swish and spit and swish and swallow...I know they helped me.

Don't forget you can request to see a nutritionist at the hospital...

Remember it's one day at a time and we're all here to support your every step....

Hang tough!

Tomorrow is the 1/2 way point and its all downhill from there. Baby steps and you will get there.

I feel so badly for all the pain you are having, but glad that they are now on top of it with weekly consultations. Do whatever you need to to get through this treatment.

Post often.

Your courage in fighting through this inspires and encourages us all.

Donna

Almost half way. You can do it!!

Perhaps you could use a cold gel pack (fridge/freezer). This might last a bit longer than a cloth.

M

Sone, this WAR can be won but it will not be easy as everyone has stated. Hang tuff for your family and the next few weeks will pass and then recovery begins!! Defeat this enemy and enjoy life. Semper-Fi Bob

I would like to preface this statement because I have not had radiation but the glossectomy sure does make it hard to eat, especially after the 4th one. This said, I have found some great high calorie foods that you just swallow. My last surgery I lived on lobster bisque soup from Wegmans. Not sure if everyone has a Wegmans, it's a grocery store with a lot of specialty items. Anyway...just a thought I wanted to share. I found I got really tired of the sweet Ensure so this change in flavor seemed like a steak.

Hump Day!! 17 down and 16 to go!!!!!!

You know, last week when I was at the end of my rope, I kept praying to God asking Him to show me the way. Then I found the pain specialist. Then I found this website. Then you all yelled at me. I guess I got my answer. Thank you. I'm really surprised how much your cheering me on is actually helping.

I went back to the pain management doctor today and got my pain meds increased. Yippee, more relief! The doctor told me that I don't have to worry about going back to that awful place of dire pain where I was last week, that I'm entitled to better pain management than that. I thought, that's just what someone on the website told me!

So, regarding the thrush, I'll just keep a close eye on things and request the Diflucan script the second I see evidence of it starting. Thanks for the info.

I'll try the gelpack on my cheek--it probably will last longer than the cold rag that I have to keep getting cold!

I'll ask the nutritionist about the Carnation Instant Breakfast very high calorie drink--it might help to have some on hand for days I can't get down 4 ensure pluses. I don't think I could get down lobster bisque, even at room temp, but I'll keep it in mind for recovery--it sounds good. I am sooooo tired of ensure!

What is this mouth stretching everyone is talking about?? I've never heard of such a thing.

Thanks,
Sone

Hi Sone,

It is so great to feel the different tone in your posts. I'm just so happy you found this site and even more happy you found a doctor to help you with the pain. It's easy to understand why you felt the way you did last week, the pain sounds like it was so awful.

You are on your way to the end of treatment and towards the healing and lobster bisque!! Then, when someone new comes to the site you will be there to offer support and help cheer them on. See how great it is?!?!

I am sincerly thrilled that you went back to treatment and are giving it all you got...good for you!!! By the way, I sent you a personal message. Did you get it? If you see a blinking envelope nexy to "my stuff" someone sent you one:) No worries about a reply, just wanted you to know.

So, tell us about your children. We like to share in each others happiness and fun things too.

Yeah!!! You are more than half way done. John kept a calendar on the refrigerator and crossed off each day, that helped. I'm so glad you found this website and went back to treatments. Treatment affects everyone differently and no one should have to suffer in pain. I'm glad that you have better pain management now. Just take each day as it comes. I'll keep you in my prayers. Wanda

Sone,

On the mouth stretching question...do you have a speech/swallow expert on your team? Sometimes the radiation can cause trismus...which will keep your mouth from opening. A healthy mouth opening should allow you to fit 4 fingers sideways into your mouth. If you can't do that, you will need to do exercises daily.

My husband was given an RX for the Therabite system and did very simple exercises with that. Other folks are given mouth exercises guidelines that do not require any special equipment.

I'm glad you are keeping up with your treatments...we are all so proud of you. From caregivers to patients, we can all relate to how hard it is to walk into the hospital day after day.

Keep on keeping on! We're happy to see you posting daily!!

The simplest solution for keeping trismus at bay is to use wooden tongue depressors from the drug store each day. While your mouth is opening normally (usually before treatment) stack a batch of these between your front teeth. I could hold 15. Then, every day through treatment, and for a couple of months afterwards, keep trying to put that number there. The stretching begins when you can't manage the original number, and you really have to stretch the muscle to do it, holding them in your mouth for at least 10 minutes after each (painful) stretch. If you do this, at the end of it all you should be able to keep your ability to open normally. I ended up at the finish line only able to put 12 in despite all the work, but there are people here who can only open their mouths 1/2 inch at the end of treatment..... and that is a serious problem.

When the muscle gets radiated scar tissue forms in it making the elasticity disappear. (scar tissue is not elastic). The trick is to keep micro tearing the scar tissue to prevent it from become intractable.

All this may be tough for some, since they just don't want to eat, do the exercises, or anything during treatment more than be sick and sleep. While all that is understandable given the inevitable depression that many of us go through, treatment is an active participation process to have the best end result. Participation in knowledge acquisition, asking the right questions, asking for/getting the right treatments and pain meds, and even simple jaw exercises and proper diet and hydration. It all takes effort and work, in addition to what the docs are doing.

Hi, Sone -

I might also suggest an exercise routine my prosthodontist gave me: Using the thumb of one hand and forefinger of the other, pull your mouth open as wide as possible and hold, stretching the jaw muscle (not til it hurts a lot, but you need to feel the stretch!). Hold for a count of 7, then repeat 10 times. Do this routine three times a day (I do it after eating just to be sure I remember).

This ideally will enable you to maintain/improve your mouth opening. I'm about to start radiation myself and have been told it's crucial to keep doing my exercises throughout (I'm anticipating extra pain from the radiation, so haven't had to face that yet). My prosthodontist said that if I feel I need a Therabite to help me through, I should definitely get one -- consider that, too. Just Google it to see some info.

Good luck as you continue your treatments! We're all pulling for you!

Remember it's Carnation VHC and it has 560 calories. You don't need a prescrip but you must either get it online or from the pharmacy dept of like Walgreens or Cvs. If you do order it online be sure to use Amazon and give the credit to this site as we get a kickback and it won't affect your price.

I have been gone for a week. When I returned, I was busy reading all the new posts. Sone, I want to encourage you that you can do it. I have not had to do radiation yet, but possibly someday I will. I know that I will be coming back to this site for the encouragement and the push to continue on. You are very brave, and so is everyone on here who as gone through it. I just hope I am as brave as you all. This cancer stuff us nasty and so is the treatment for it, but necessary for life. I will be praying for you.

Sone,
I am a Christian and truly believe that God "...never gives us more then we can handle", although I wish He wouldn't keep testing me!

Prayer and a lot of people praying for me, certainly helped my peace of mind and resolve. I do believe that God enables the doctors to do the treatment and He does the actual healing. There were many times when I had to ask (or pray) for the strength to carry on and get through treatment. It was, by far, the most difficult time in my life but now I am over 6 years cancer free and active, once again, serving in my church's music ministry.

I will keep you in my prayers as you complete your journey through this.

So here's a post for those of your that think Gary and I never disagree on anything or team up to be critical of someone.

With respect to everyone's belief systems, and meaning no offense to anyone. That is probably the quote I hear the most from people, and like the least Gary. How often have we seen "God" give good people more than they can handle on these boards? Or around the world in the form of starvation, disease, social upheaval that they are innocents caught in the middle of and more. I think that prayer is a powerful thing, and there is no doubt that those with strong religious beliefs (regardless of what kind) do better emotionally when adversity is upon them. But I am less sure that God is always listening. Besides my experiences here with this disease, I held far too many good, faithful, young, boys in my arms in some far away rice paddy as they died. I think it is fair to say that in either case they were given more than they could handle.

Having said all that... I'm ready for all the slings and arrows....

Surely there have to be better religious quotes than that one.

Would you believe 19 down and 14 to go?!?!?!

My RO has me doing double treatments of Fridays (which is Thursday this week since they are closed on Friday due to the holiday weekend). Did any of you do double treatments on Fridays? My RO wanted me to do them since I didn't start radiation until 9 weeks post surgery, and he said ideal is to start 6-8 weeks post surgery, so he wants me to "catch up". He said it is especially important now since I missed a week of treatments. I guess this makes sense, but boy does it wipe me out. I feel like a train hit me! I can't get up out of this bed now due to extreme fatigue and nausea. I hope it's better tomorrow.

Thanks, Brian and others, for the info on trismus. I've never heard of it before, so I asked my RO about it today. He said, "Oh yea, that can happen, but I don't like people to stretch too much before radiation is complete because it can cause damage to the teeth." I don't get that, but he gave me some wooden tongue depressors anyway and said I could do some "Light" stretching with them, but nothing too aggressive. I think I'll start right away! In fact, let me see...I can get in 20 tongue depressors!!! Yippee. They don't want me to start with a speech therapist until after treatment is complete also. So in the meantime, I just talk funny. My 8 and 10 year old kids say they can't remember how I used to talk when I was "Normal Mommy".

Also I asked the nutritionist today about the CIB VHC. She gave me one can as a sample and said I might need to thin it with skim milk (which I drink soy anyway), so we'll see how that tastes. Any suggestions on recipes to make it taste good? Thanks too on the tip about giving this website credit on Amazon, I'll be sure to do that if I order some there.

I noticed today, especially after 2 treatments in one day, it is really hard to swallow. I'm trying really hard to keep swallowing, I don't want to lose that ability. I know many of you ended up on a PEG, and I might too, but I want to avoid it if I can!!

Regarding the God discussion...I'm not sure why there needs to be suffering in this world. I especially don't get it when I see small children with cancer, I don't know if I'll ever get the reason why that needs to happen, along with all the suffering that takes place in third world countries. I do know, though, that without suffering there would be no compassion. And, I truly believe that we are meant to love and serve one another in this world. What a beautiful testament this website is to loving and serving one another, so thank you for that. And since I believe in the strong power of prayer, thank you for all of yours. I'll keep you all in mine as well.

Until Monday...
Sone

Sone,

I don't know how I missed this thread. I don't think I have ever come into any thread after 55 posts.

I just want you to know how thrilled I was to read through these posts and to see how you responded to them and have gotten so far in your treatment. I am proud of my family here at the OCF in how they prodded, no kicked you in the butt, to get you to do what they KNEW you had to do. Gary's, Ray's and others blunt words were just what you needed.

We all know you can do this and although I fortunately never needed radiation, I feel like I have lived through it many times over the last 4+ years with so many of my friends.

I can't for the life of me understand why your RO would feel that stetching would harm the teeth. If you don't mind, could you ask him to elaborate on this and let me know. I will be away for a week, but will check back here to see if you found out.

Good luck with you continuing success in completing your treatment and I wish you a speedy recovery.

Jerry

PS Brian, no slings and arrows from this member.

Awesome news - only 14 left. I sure understand the extreme fatigue and that will stay with your for awhile - it might even get worse before it gets better, but your job right now is to take care of YOU.

Get your food, get your rest, and get your treatments. Sounds eash eh?

You are doing awesome. Keep up the good work.

As far as recipes, I can't help alot with that - I managed to swallow all the way throug treatment - both times. I know alot have really loved smoothies and I'm sure they will chime in with some great ideas.

Take care.

Donna

Hi sone
robins treatment took him over the easter holidays so he got double whammy a few times as well.It totally wiped him out,i think he slept for the world,and it made his voice very hard to hear,but like all the rest of it ,he got through,and it wasn't as bad as the week they decided to give him an intense dose in a specific area for a few days towards the end of his treatment.

you are doing great

love liz

See prayer does work.... I was praying that you wouldn't take my post in a bad way.... although Gary hasn't seen it yet, so I'm still bracing myself.

Brian. YOU HEATHEN! No, just kidding ha ha.

I am not so sure that the pain and suffering, that many randomly seem to get, is from God. The scriptures state that all God wants to do is to "prosper us and give us the desires of our heart". I sure didn't desire cancer. I do believe that God allows things to happen to refine us and/or make us dependent on Him. There are many books written about why God allows bad things to happen to good people, but I don't believe that he is responsible for the bad things. The creation is less than perfect, as we are also, so earthquakes, asteroids, volcanoes, meteors, famine, tsunamis, drought, floods, unaccountable TARP, irresponsibly crafted nationalized healthcare, 12 trillion dollar debt, little kids getting cancer and just plain evil (both individual and institutionalized), etc., are part and parcel of it. We're quite capable of screwing things up much worse than God, in many respects.

When I was going through AA, many years ago, my sponsor who in atheist I might add, told me to take a piece of paper and write down all of the things I thought God should be - and that would become my God or "higher power". So, "my" God is merciful, compassionate, forgiving, my counselor and my strength. He was also balanced and in the middle - not radical left or right - a tougher act to follow than being radical actually. That was easy to do and I didn't have to have some other yahoo define to me what THEIR conception of God is. A major problems with many religions today.

And no, you won't hear me say often about "God never giving us yada yada", but Sone started the subject and since she mentioned prayer then it ocurred to me that she is a Christian or person of faith that they would understand that saying. It is, after all, a leap of faith to get through treatment.

The rules are that no religious dicussion unless the original poster brings it up in their topic first have been observed.

I understand why many people are skeptical - I was an agnostic for decades. I can thoroughly understand why many would be pissed off at God for getting cancer and having to go through this hell.

It is a component of my personal story that my faith helped me immensely to get through this.

I don't wish for further discussion, on my personal worldview to hijack Sone's thread so if any of you are interested in "slings and arrows" pm me instead or start a new topic in the blogs or something.

Sone deserves to have a place where she feels safe.

Sone,

I drank the VHC room temp and straight while my mouth was so sore and then I started mixing it with whole milk (half and half). My goal was to get as many calories as possible and I didn't give a rat's butt about fat content.

Keep this in mind if you are challenged down the road in swallowing.

Sone,

Everytime I come to the forum (which is everyday!!) I check this thread to see how are you doing. I can't tell you how proud I am of you!! You are so strong and doing just great. You make my day when I see your posts and see your stregnth. Only 14 more treatments!!!! This is awesome news.

In regards to faith, I believe everyone has their own interpritation of this. Like Sone said, if we don't experience pain and suffering how would we have sympathy? The love and faith of the people on this site amazes me everyday. The power of prayer is amazing, I think I said this on another thread..in my family we say noisy prayers. My cousin is dealing with ovarian and 3rd bout of breat cancer. She herself is amazing and the family says noisy prayers for her (and me) we are a loud bunch!!! God has to hear us:)BTW....she is doing great...radiation has been completed and we are really enjoying "INDEPENDENCE DAY"

Love to all
xoxo

Sone,
I am very proud of you. Keep the strength. You will get through this.

Sone,
I haven't jumped into this thread, yet. But I like everyone else have been reading and cheering you on.
I just wanted to say-You go girl! I can't wait to read you've made it to the end of this.
Amy

Yes SONE!! You are not only getting inspiration YOU ARE AN INSPIRATION!! I came home from the hospital tonite bone tired after my husband had a bad day !! and I read through this thread reminded me that this battle and its aftermath are ONE DAY AT A TIME but there is a light at the end of the tunnel GOOD FOR YOU !! YOU just take it one day at time and GO GIRL!!

20 down and 13 to go!!

It is soooo hard! I've increased my pain meds again...I just hope and pray so hard that I can make it through the last 13, which will likely get harder with each treatment. Swallowing is so hard, and my voice is barely audible. My mouth and throat burn non-stop.

I need some helpful suggestions to battle mouth dryness. Of course, you all already know, that by now my salivary glands are fried and useless. How do you combat the dryness when you sleep? I sleep with my mouth closed, breathing through my nose, but still wake every hour or so with everything bone dry. My teeth, gums, tongue, roof of my mouth, etc. are completely dry and burning. I have a cup of water by my bed that I reach over to every hour. I swill the water in my mouth for a while, trying to wet everything, over and over again. Is there ANYTHING I can do to keep my mouth wet longer at night so I can sleep longer than one hour? This afternoon I could nap only 30 minutes before waking with the dry burning pain. Any suggestions??

And Gary, thank you, I do feel safe here.
Sone

Sone - sorry that I don't have any suggestions for your dry mouth, as I guess I was lucky and didn't have radiation only surgery. However I just wanted to tell you that I was just thinking about you and hoping you were still hanging in there - even though I haven't responded before, your emails really moved me, at first because of the pain and suffering you were going through and then to see how you found the strength, some of it from the folks here, to go on with your treatment. Sometimes it's amazing how strong you can be, and how much you can go through, isn't it?!! Hoping that you will find some light at the end of this long road!

Sone,

If you haven't tried the Biotene products yet, it would be worth it to try them. They have a gel called Oral Balance that coats the mouth and gums which might be helpful, along with the mouthwash and toothpaste. Richard also used the mouth spray which helps to moisten the mouth. He would wake up with dry mouth and spray with this. You can also take it with you when you go out. The Biotene mouth products really helped to get some temporary relief. Do all you can to finish the treatment and keep posting... Geri

Hi, Sone,

I am so, so happy that you are nearing the end of your treatment. About the halfway mark I wrote the number of treatments left and crossed them off each day and it really felt that the end of radiation was near. My husband couldn't talk for the last week or two and felt pretty awful and it was about all he could do to literally get dressed and put one foot in front of the other and go to treatment (rather, be driven to treatment).

re/ dry mouth, biotene products help some but a cool or warm air vaporizer might help (at least to give you some sense of moisture).

My thoughts and prayers are with you - Sophie

Biotene stuff might help it coats and therefore lasts longer.
You can also try a humidifier and keep the room very humid.

M

Sone, good job!!!! Keep up the good work, you are now past the 1/2 way point. Keep it up and we are here to cheer you on. Im following up on your progress and very happy each time I see you are continuing.

Great job Sone!!!

Keep it up, Sone. We are cheering for you.

Yes on the biotene and the vaporizer. Bob thought the vaporizer was an exercise in futility when I first set it up. Actually it did help some, not alot but it he said it made at least a little bit of a difference.

I just opened and closed my mouth as wide as I could several times a day. I wish I knew or thought about the tongue suppressors. I never had a large mouth to begin with (well compared to my mother's mouth which is HUGE) so now I am wondering how many tongue suppressors would have initially fit? I suppose I will never know...

Margaret--When you brought up the four fingered test--you really had me worried!!! I looked at my fingers and was like, "NO FREAKIN' WAY! I could never get four of my fingers in my MOUTH!"(I was thinking vertical) THEN I realized that you said "sideways"....I have no problem doing that--vertical? Different story--I can fit three and then some vertical...fingers too fat.


How many months post tx do we stretch our mouths?


Sone--How are you doing?

Sone,

Just keep a bottle of water on a table in every room of your house. Keep several in your car as I always was leaving a bottle somewhere in every store I went into. At night keep a small spray bottle filled with water on the table beside your bed and when you wake up just give it a mist.

Ditto what david said Rob had a spray bottle.

21 down and 12 to go!!

Thanks everyone for your suggestions! I have been sleeping with a cool mist vaporizer since the first radiation treatment, and I agree it helps. Can't sleep without the sound now.

But thanks soooo much for the Biotene recommendation!!! My husband ran out last night to Walgreens and bought the mouthwash and spray bottle (I was already using the toothpaste, but didn't realize they had other products). Unfortunately he couldn't find the gel, but the spray bottle really worked! I sprayed my mouth before I went to sleep and slept for 3 hours straight. Yippee!!! And today I was able to take a 1.5 hour nap!! And when I woke up my mouth wasn't bone dry. I do sip water continuously throughout the day, but it's hard to keep your mouth wet while you sleep. I hope some salivary gland function returns when I'm done?

You all are really fantastic! Thank you so much for your encouragement and support and suggestions.

Sone

Sone,

You might want to consider asking your doctor for a script of pilocarpine or any other saliva producing med. It helped me a lot!

Just by chance are you doing fluoride treatments?

Sone...you are doing great. I'm sorry I don't have suggestions since our treatment is different but I'm here cheering you on everyday!!! It makes me so happy when I hear how you are doing. Can you believe you are more than half way!!!

Sone,
I was thrilled to read your post about the Biotene products. They really do provide some relief from the awful side effects of radiation. Have your husband make another trip to Walgreens and purchase the Biotene Dry Mouth Gum. I forgot to mention it in my previous post. My husband chews it all the time and takes it with him when we go hiking. If you have mouth sores, you might have to wait awhile to use it. Your jaw will get a lot of stimulation with the chewing action and it helps to keep the mouth moist. You have 12 treatments left and a few weeks after treatment ends that will still be difficult, but YOU are doing this and getting through it. This journey is so difficult on many different levels and not just physical. YOU dug deep down and with some tough love from this forum, YOU found the strength and determination to continue. Kudos to you and you will emerge into the light at the end of the tunnel stronger than you ever thought possible. Keep posting... Geri

22 down and 11 to go!!

More sores, more swelling, more pain, less voice....

I have another question since you all are so helpful. It is getting more difficult each day to swallow. The muscles in my neck just don't seem to want to swallow anymore. (On a sidenote, the muscles around my neck dissection are spasming and are hard as a rock). Are there any exercises that I could be doing now to strengthen those muscles to reduce the chances that I will lose the ability to swallow? Or, do I just have to hope? I'm not currently working with any type of physical therapist or speech therapist because my RO said to wait until after my treatments were complete, but I'm just wondering if there is something I could be doing now to help those swallowing muscles?

As always, thanks for your help and support!
Sone

Sone. Very good job. You should be proud of yoruself for your determination to continue. I know its not easy and as time goes on it gets more difficult. To help with swallowing, just keep doing it. Just small sips of water several times per day will help.

Im not familiar with the neck muscle spasms or with a neck dissection. Many others here have had that done and will be able to help you with that.

Keep up the good work, you are almost finished.

Sone,

I lost my voice for a solid three weeks...My GF and some others thought I was faking in order to ignore them..I wasn't faking...

re loosing voice:
I had that too, it was not so much loosing it than speaking being extremely uncomfortable (as was swallowing). For short term use I took lidocaine but for the majority of the time I just did not talk and used a pad and hand signals (so they say!)

M

2 weeks and you are done!

Sone, do try and continue swallowing each and every day. I don't remember if you have a Peg or not? When my mouth started to "lock up" I would do what I called a "controlled yawn" meaning I would yawn and fire those muscles but control how far I opened my mouth but I felt it was important to continue keep both my swallowing muscles and my jaw opening muscles working. I may have been just lucky or my tissues were just not as damaged as others during Tx or this may have benefited me but I have never had any post Tx swallowing or trismus issues.

Sone, the last two weeks I was crying every time I sat on that table because I knew how much worse things would get. It only lasted less than a minute because crying hurt too. It was really tough, but I plowed through it, and it's behind me. It's been two months, and my mouth is dry, I wake up every 2-3 hours for a drink (I found that water works just as well as anything else that costs money, but everyone is different, and everyone's salivary function or lack thereof depends on where and how strong radiation was targeted). But it's so so so much better than it was the last two weeks of treatment and about a month after it ended. It's night and day. Keep going! You're almost done!

23 down and 10 to go!!

I can't believe I've gotten this far! You're right, every treatment is soooooo hard.

I'm down from 20 tongue depressers to 16. Bummer. I'll keep stretching, and thanks for the controlled yawn suggestion, I'll try that.

Swallowing is really tough today, but I'm forcing the issue. I've come this far without a PEG, and I don't want one now. Anyone work with a speech therapist who gave you swallowing exercises? I'm not sure if they can help in that area, but if they can, I will demand to start working with one now.

Also my nasal passages keep swelling shut. Since breathing through my mouth is NOT an option (that's torture for sure), I asked my RO today for a recommendation. He suggested using Afrin Nasal Spray, but isn't that stuff addicting? I don't want to use any more drugs that I'll have to wean myslef off of, since the massive level of narcotics I'm taking will be hard enough. I was using Sudafed, but the RO didn't like that option since it could possibly dry me out more (which I don't think it's possible to be dryer than bone dry!). Anyone use Afrin?

Hugs and prayers and squeeks to all.
Sone

Yeah, only 10 more

I use Nasonex prescription nasal apray. I also have a few others Ive been given. They all work and are not addicting (at least not to me). I was also given prescription sinutab to help with the sinuses.

I used a physical therapist for trismus (restricted mouth opening). When I started I was 2 sticks and moved up to max 6 which hurt like heck. You do not want those problems, so stretch like crazy

Try tiny sips of water. Sorry but I didnt use a speech therapist for swallowing, but did see one for pronounciation a couple times.

Sone,

I've been reading your posts and cheering you on. It is a tough journey, but unfortunately a necessary one. Everyone has given you great advice. I didn�t have the nasal passage swelling due to RT, but had problems when undergoing HBO and used Afrin then � worked great for me and no addiction problems. I also used Ocean Saline Nasal Spray, an OTC product used to moisturize dry nasal passages (there are generic versions available). This may help also, but you may want to check with your doctor first.

You will be done soon!

Hi Sone,

My father in law has used Afrin in the past and did have problems. Although he used it for YEARS....a very long time. I think if you are just using it to get through this you won't have any problems. I know what you mean about not wanting to be another drug. Weening off can be scary.

25 down and 8 to go!!

As you might recall from last week, I'm doing 2 treatments on Fridays. It's REALLY hard on me. This week, though, the RO's nurse found an area for me where I can lay down on a cot (with a warm blanket!) in between the treatments, which are 6 hours apart. That was soooo helpful today. I basically dozed the entire day, waking only twice to drink ensure and take meds.

Now I'm flat on my back, feeling like a train hit me again. The swallowing is getting more difficult every hour! It takes a long time to get one little bit of ensure or water swallowed. I'm still looking for helpful hints on how to keep my swallowing ability!

Happy Weekend!
Sone

Sone,

I think the only thing you can do is keep doing what you're doing, swallowing. I'm afraid its going to get harder before it gets easier. And make sure you're stretching your jaw and your tongue muscles every single day.

And most importantly, hang in there!

- Margaret

Sone,

For what it's worth you are perfectly NORMAL at this point in your Tx. Before long it will be OVER so hang in there. Heck I thought I did good but I don't remember feeling like posting around this time? You go girl.

You are doing GREAT. Only 8 to go - that is amazing, I am so very happy for you. So inbetween patting yourself on the back, you have to "just do it" - just keep on swallowing. Perhaps this is as bad as it is going to get? Try not to anticipate what will happen after the treatments - just let your body be. And swallow, swallow, swallow! You are doing awesome.

Donna.

And P.S. - those warmed blankets the hospital has are a gift aren't they? LOVE EM.

Donna

You are doing great. Keep it up!