i decided to give myself a last chance to fight this terrible disease.
i decided to be radiated for a 2nd time along with chemo. i have already been operated 6 times so this is no more an option. my Drs told me that they have to do with a very bad gene that is very hard to defeat. i have started a pre-treatment in order to get raedy for the radiation, but i feel so exhausted with no energy at all. could a Tx instead of giving more time do the contrary by reducing the time left? and instead of living less but better you end up losing your fight earlier and with all the costs that these treatments have? if you were in my shoes what would you do? is it possible to pass away because of severe side effects? i really don't know what to do. please advise!

Sophia, I don't know what I would do in your shoes. The questions you are asking are questions you should be asking your doctors--they can give you answers better than us. We aren't doctors. It's perfectly reasonable to be asking about the tradeoff between treatment benefits and possible bad side effects at any point in cancer treatment but certianly in your situation where they are recommending reradiation for a recurrence.

Some questions might be whether the treatment will have any chance of permanently making the cancer disappear or just slowing it down? If the answer is just slowing it down, how much benefit does research show there is? How much chance it will even slow it down at all? If it does slow it down, what's the average extra time you get? Are the side effects so severe I could end up dying from them? What will you do to be sure they don't get life-threateningly severe? Those are the questions to take to your doctor. And be clear you want honest answers, even if the answers might be hard to hear.

Nelie

I agree with Nelie, please talk with your doctors; also you could separate this is two (three) outcomes.

A) reasonable chance for cure
B) slowing down the progression
C) just palliative treatment

In either case there can be serious complications from treatment although for C the radiation/chemo dosage would be smaller and have less side effects. That might also be an option which you could take if the treatment turns out to be too much. So the decision could be deferred until later if that is of any use.
Perhaps this approach (go for it and decide later if continuation is desirable) is something to discuss with your team?


Markus

Sophia,

You started your post with " i decided to give myself a last chance to fight this terrible disease." so it sounds like that's the way you want to proceed. This is a tough issue that none of us want to be faced with and Nelie and Markus have given you good questions to ask your doctors. Ask them to speak slowly and take notes and ask them to repeat their answers if necessary. Take a friend or a tape recorder. Then listen to them in private. The rest has to be up to you.

Hi Sophia- I just want you to know that you are very brave.
This is a very daunting position to be in.

I hope that you get some relief from your pain and discomfort somehow.

LOVE Kate

Sophia,

The only thing I can tell you is to keep Fighting. There is no, last chance that I know of.

As you read my history, you can see I believe in fighting!!

I was once told to do ALL that you possibly can. When that is done then you have the Right to give up!! OR let go.

Is this Hard to do? YES, it is. Most of Us here know that.

When you are dealing with CANCER we know what can happen. It is important to understand that. Do not get me wrong. Having CANCER does NOT mean you will DIE! You will and always have a chance to survive it all.

Please Learn all you can about the Caner you have. That is what gives you the POWER to survive.

Take care and Know that All of us here are thinking of you!!

bye for now... Diane

Sophia,

The doctors seem to be offering you a course of action that will be beneficial. They can not predict the future, they can only offer their skills and knowledge based on experience. You have been given very good advice on how to talk to the doctors. I trust that they will be able to anwser your questions.
Please know that you are in my thoughts and prayers.
Malka

Sophia,
Philosophically, all of us got palliative treatment since life is a terminal illness and the treatment that we got, extends life. I personally don't think that my lifespan will be the same as it may have been pre-Tx - but I don't dwell in it either. I just take it one day at a time.

There is risk in most medical treatments and your decision must be based on what is the risk and/or benefit of the procedures they are proposing. This includes quality of life as well (QOL).

There have been some promising studies on ReRT specifically for head and neck, see:

http://jjco.oxfordjournals.org/cgi/content/full/34/2/61

also: http://www3.interscience.wiley.com/journal/82003276/abstract?CRETRY=1&SRETRY=0

And from Japan: http://sciencelinks.jp/j-east/article/200121/000020012101A0745026.php

There is no mention of the hemorrage issue but their findings about "chemoresistive" were interesting. I have not heard that term used before.

My husband almost died one week after my rad treatent finished in a motorcycle accident. I had tongue cancer and the free flap etc but i was told because the accident was so soon I now have ptsd. I have started smoking again and I hate myself and want to die as I had stopped for three months. He cant wait to get his bike fixed and get back on the road, yet he is furious at me for smoking and doesnt understand why I am doing it. I NEED TO STOP...frankly I am suicidle and would rather die as the arguements have now become very cruel on his side. He has PTSD as he is a Veteran to throw into the mix. I am supposed to be his carer so I have none. Can someone...anyone....help me...i truly want to leave this world for a better one as I am in Hell already. Please help me...Im usually fairly up and happy but this is taking my soul piece by piece. He even BOUGHT me a pkt yesterday....whats going on? I have no one to talk to (I am booked in with a quit dr but he is still at me every day about how "weak" I am and how strong he is. (we smoked for the same amout of time....he gave up earlier as he is older than me. HELP!!! I cant see any way out.

Edited by LynfromOz (29-06-2008 10:04 AM)
__

Lynn,
PLEASE slow down - Your life is still worth living.
You have friends here who can help. Please start your own thread so we can respond.

Many of us have battled the cigarettes and there is now more help than ever for quiting. Cigarette smoking is one of the strongest addictions and you are to be admired for having quit. If you did that once, you can do it again. It is not a matter of strengh or weakness but a determination to get the help needed and stick with it.
Perhaps the harshness is your husband's frustration that you have started and he doesn't know how to help you.

1st thing,, Lyn why are you smoking ?? If old Jim can quit so can you . I don't want you that think like I do making things worse for yourself. Sophia, which ever way you decide to go, just remember to go in with the attitude that " Move over Cancer, I'm gonna whip your butt bigtime" . You have to keep a positive attitude through out this Journey.

Hi Lynn,
I agree with both Malka and Jim that it is hard quitting the cigarettes which I did only a few days before my operation however I am very worried about your post.
I have just been reading some of your previous ones again and also Sophia's as she started this thread last month.
I notice that Sophia's postings are now on Oral Cancer Recurrence/Current Situation and after reading the latest on the 26th note that she is also going through some hard times.
Lynn, there are also a lot here who have been depressed at various stages of our journey. I can only suggest that you talk to your GP about this. He/She should be able to refer you to some experts who can help in this field. Please take care keep us updated.
Love
Gabriele

thank you all...i just had an email smack from Jim (haha) and you are all right...I have to be stronger than this...I AM....I WILL BEAT THIS ADDICTION..You are all such good friends and support...what would I do without you. I feel better already!. My husband has suggested holding on to them and dishing them out when he thinks I REALLY need/deserve on. Do you guys think this would work? He is a kind man...I have made him out to be a scary monster, but he is one of the kindesnt men I have ever met. I also know he loves me.
Love to you all Lyn xxxxx

you can beat this addiction & i am sure that you will make it. you are so strong, but you just don;t know it. you are fighting this terrible disease & at the same time you are the shoulder for your husband to lean on. life has a lot of good things, great things or just everyday little things to offer you & your family. please just start to dream of how happy your life could be, what would make you feel happy and believe me this could happen. listen to music and do things that makes you feel nice.
you don;t need cigarettes, it's just a click in your mind and yes you can make it.take this packet and throw it away, you feel so so good with yourself!live your life that is such a great gift sent from god, and live it as you like it, i know that you can find the right way.
love,

Please don't give up on yourself. You have been through quite a lot and your emotions are confused to say the least. Please try to talk to a professional about your feelings. While everyone's intentions on this site are admirable, we lack the training and experience to truly help you. With that said this site and all the wonderful people here will do whatever we can but I think you need an expert as soon as possible.

Sophia:

With everything you are going thru right now, you are an angel trying to help others with your wisdom. I have been reading your posts and wish you the best with your battle. Keep up your positive attitude. We are pulling for you.

Lynn: It seems like you may need to speak to a counselor about your problems right away. Starting a new post would be helpful to other OCF users to give you their attention to your particular problem. I smoked for 25 years, and know first hand if you want to quit then you can do it.

Christine

Dear Lynn,
As one who went back to smoking 1 cig a day six months after having cancer the first time, I know how hard it is to quit. What that got me was cancer of the voice box 4 years later resulting in a total larygectomy. As a singer this is the last thing you want to risk. The smoking is also going to damage your voice more now since you have had radiation. That alone should be enough incentive to quit.

When I finally quit for good, I just threw them out. No patches, no drugs, just cold turkey. I was miserable to be with for the first week. Walks around the block helped when I wanted to throw something at someone or rant and rave. By the end of the first month, my nerves had calmed down and the urges had mostly stopped. One of the problems with smoking only a few a day is that they cigarretes get so old and dried out that they are worse for you than they normally are because they burn at a higher temp. So no, don't have hubby hold on to them, toss them out, find some hard candy like lemon drops to suck on instead.

Good luck. I know you can do it. If I can, anyone can.

Take care,
Eileen