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.