What would you do if you had been diagnosed with a terminal illness and were offered the chance to trial a new drug that could possibly put you in remission BUT also has the possibility of fatal side effects in some cases.

You would be on a cycle of 28 days treatment then 14 days rest for anything up to 2 years and  would have to attend a hospital in London for the treatment which would involve a round journey of about 130 miles each time.

If you presently had some good days and some bad days would you be willing to take the chance that side effects could mean that you had 28 bad days in a row  (50% chance) and perhaps have to permanently give up the limited freedom you are currently making the most of now? Or would you see it as a chance to perhaps live longer but not necessarily with a wonderful quality of life?

Knowing that you yourself would probably not benefit to any great degree from the drug but, if it turned out to be a success, you could be helping other sufferers would you be prepared to chance losing the good times you can enjoy at present?
We would be really grateful for any thoughts. Previously quality of life has always been the measuring stick for us but now have a chance to "clutch at a straw "and just don't know what to do.

What would you do in this position.

Many thanks

Oh Harley, what a tough tough question, no one can tell you the answer but I suppose we can share personal experiences if that helps.

I know when my Mum was diagnosed with terminal lung cancer she had the choice of chemo, which wouldn't cure her but may buy her more time. She turned it down and we made a list of all the things she wanted to do or see. We had a fabulous 3 years together, an absolute whale of a time really, My Mum was mostly ok, with higher and higher doses of morphine every day and of course all the other pills that come with that - anti emetics, laxatives etc etc but basically she was enjoying the time we had left and I'm so glad she made that choice. My next door neighbour was diagnosed a few years later with cancer too, he had several sessions of intensive chemo and was so ill most of the time that personally I would seek out quality of life.

Janexx

I think personally, I would take a chance on the action that meant a better quality of life, RATHER THAN JUST A LONGER ONE!!! Sorry if you are having to face this ...sending prayers your way...love Dawn

I have to say if it was me I wouldn't go for it, neither would I go for chemo. if it was only to prolong my life.  But that is just my feelings.  I know that many would try anything if they thought that it would prolong their lives but I myself wouldn't want to.

Maybe this is because I only have my parents to worry about and no children, I don't know, but it wouldn't be for me at the time of life that I'm at at the moment and I'm still fairly young.  I'd just get out there and try and do all the things that I always dreamed of.

Right up until the drug trial was offered yesterday we always went with the belief that quality over quantity was the way to go. My OH always said that he couldn't see the point of being helped to struggle through one day just so he could struggle through the next.

Since we learned recently that his remission was over the whole issue has been turned upside down for him and for him to be considering the trial at all absolutely threw me but at the end of the day it has to be his decision but it is so against all his previous beliefs that he is now going round and round in circles trying to make a decision.

I really don't want him to do the trials but don't know how to say this to him without appearing selfish. We have always talked things through before but this is just so difficult to talk about with family and friends as I just keep crying which doesn't help at all.

I'm very sorry to hear that you are having to face a decision like this. I'd definitely go for quality of life over quantity, but if your OH went on the trial and found the side effects intolerable, he could always stop the treatment. On the other hand if the side effects are not great he would then have a chance at remission. So I'd go for it.

I think you really need to keep those communication lines open no matter how difficult that seems.  Your family and friends will expect you to be upset but they love you and should be able to cope with that.  It is even more important that you and your OH talk fully as any misundertandings at this point could lead to regrets and loosing the knowledge that any decisions that were made were the right ones for both of you.

Harley I'm so sorry - I have absolutely no idea how best to answer you but want to let you know that I've said a prayer for your special intentions.  I don't know your creed, if any, but I believe we are guided by our Guardian Angel to best cope with difficult decisions.  May yours guide you.

God Bless, Teri xxx

I haven't a clue, I just can't imagine what I would do, how can anyone when they are not actually face to face with such an awful dilemma :(  Can the hospital put you in touch with any support groups or other patients who might have made these choices and perhaps you could learn something from them about the realities of the peaks and troughs that they personally passed through although, at the end of the day, the decision seems to me to be so hugely personal. 
Good luck and best wishes for whatever path you choose.

Sending you big {{{hugs}}} My father inlaw was diagonsed about 4 years ago with throat cancer but they could'nt operate as it was too dangerous. He went on a trial for some new drugs along with chemo. His side effects are numbess in his feet (although not all the time) and he tires easily although he is 66 years old now. Recently he has succumed to artheritus in his legs but were not sure if its connected. He was warned of side effects and much worse could of happened, at the time the chemo really took it out of him but hes happy he made that desicion - it gave him a another chance of happiness with his partner who he married once in remission :)
The drug trial - during and after his treatment he gave feedback on what he went through along with others on his ward/out patients at the time and they used this information to adapt their approach and infact altered dosages/timescales etc... he did wish that this had already been done and he was benifiting the new system however he does take comfort knowing he has helped others going through it now as their side effects hopefully will be mimimal.
Speak to a consultant about all the risks again and what could go wrong. Get them to write it all down for you to take away and read together. Quality of life must come first. It worked for us but it is not for everyone. Please be honest to each other, he might think he has to do it for your sake
Good luck and best wishes my thoughts are with you both

I really don't know the answer; it's so very personal between you, but I'm sure you'll talk it through and reach the right decision for both of you.    Hugs and all my thoughts going down the wires to you

God Bless

Jo

Bless you Harley.

{{{hugs}}} to you x

I'm so very sorry to hear that about this, I'd normally always go for quality over quantity too.

I know it's not always as easy as that. My mother had skin cancer and obviously once it was diagnosed, (after her going to the doctor 3 times in several months and him not even getting up out of his chair) we knew the prognosis was not good. Unfortunately she was advised to have a lymph node taken out from behind her knee and this was done, but her leg swelled up so badly it made her life so much poorer as she was not only embarrassed but found it very hard to enjoy getting about in the car with dad as her leg would not bend. She then went ahead with chemo etc but eventually it all got too much. Mum was a fighter but looking back I wish she had perhaps gone a tiny bit earlier with her leg and body "whole".

It's just my view and I have no idea what i'd do in your difficult circumstances. The decision is so very hard :(

Sending lots of kind thoughts your way,

Lindsay
x

Having been a nurse for 34yrs and at present nursing predominantly lung cancer patients I agree with quality over quantity. Having the quality to sort out anything that needs sorting,fulfilling any dreams or wishes,settle any arguments and put things in order for the ones you are leaving behind is much more important than being ill for weeks and that is what the family remembers in the years to come.

If there is no chance of a cure from this treatment and only days of feeling ill then personally I would give it a miss and enjoy your remaining time together and deal with the symptoms of the disease as and when they occur.

I hope I don't sound too harsh but I have seen patients who have gone down both roads and the ones who refused any treatment seem to cope better including their families left behind

Rhona

I think you have given some very good advice Rhona ;)

It is a very personal thing to decide but I think you have to let your OH decide but with you both being open and honest on how you feel as it is affecting you both and not just him :)

I do hope what ever you both decide that you have the strength to go through it and you have some happy times ahead :)

Lucy
xx

Can't say anything that others haven't, so I'll just echo what Lucy has said and wish you lots of sunshine :)

Daisy

Wonderful advice Rhodap........if i had cancer, this is the path I would chose. I have kids, and dread the thought of going before they are old enough to look after themselves, as in in full time work. I wouldnt want to miss those final months running backwards and forwards, I'd want to take anything tried and tested that could help me cope,but for as long as possible I would want to be home, sorting things out and spending quality time with my family. Its the hardest choice, as everyone says, this is something you have to talk about between each other, at the end of the day it is your choice. Stay close, trust each other, don't allow outside influences get between you both.

Sending you warm wishes and much love xxxx

Hi Harley

I suffer from a mild form of cystic fibrosis and up until approx. 10 years ago I had a relatively 'normal' life - I was always a sickly child but was not diagnosed with CF until a couple of years ago, I have a rare CF gene.

I am now attending a great hospital with a fantastic CF team and am on constant medication to try and keep my health stable.  The last time I visited  my consultant he asked me if I would be interested in taking part in a new drug trial next year.  This drug COULD stop the decline in my lung function but there is a chance it could accererate it.  I have no idea what I am going to do, but I have been offered counselling before I make my decision.  At the end of the day it will be my decision and I just hope that my OH backs me up 100% - I am sure he will do.

I know this isn't any help to you but I can understand how difficult this must be for you.  Listen to your OH and back him 110%.

Take care, feel free to e-mail me if you have any questions or want to chat.
Jax 

Harley,am so sorry to hear this,this is the stuff of nightmares,it doesnt even seem like a choice,but agree that perhaps to try this new treatment?if it doesn't help then you can stop cant you?I understand the quality over quantity,but it must take a brave person to reach that decision,I dont know what you believe,but reiki and faith healing does do something,I know this is not a cure,but Ive had it,my dogs have it and well, it helps,get some yourself its all good,
In my prayers,
Ash x

On the other hand, there is a chance that by taking part in these trials he could help someone else....

NOT saying he should do them PURELY because of that, absolutely not, but it is another factor i guess.

If we were talkinga bout one of my dogs (dont ahve kids cant use that as a comparison).... or my OH.... i would be wanting quality over quantity for the other person.

What a horrid nightmare to be in though for you both (((((((((((((hugs)))))))))))

Em

Harley i have an oracle book to which i often ask questions that i cant find the answers for.I know you are in a very serious quandry and you can take what i say with a huge pinch of salt if you want!

This is what i asked: Should they go for the new treatment. The answer: "Dont pursue it"

I asked again,the answer: "Is this what you really want"

I have asked many questions over the years and it has rarely steered me wrong.Ofcourse i havnt asked life or death questions like what you are going through and by asking for you i dont mean to trivialise your problems.Your question just really made want to see what the book came up with.

If your curious let me know if you want others questions asked and we will see what it comes up with.Some answers can only be understood by the actual questioner(you),so even if what comes up may make no sense to us it may make perfect sense to you.

All of this oracle stuff aside,if it were me in your position i would probably go with the treatment,only because i would want to spend as much time as i could with my kids.The thought of dying and leaving them behind,not seeing them grow up fills me with dread. And there's always the unknown that it may work :)

I am so sorry to read of your circumstances and my thoughts are with you at this very difficult time.

This is such a personal decision that really only your OH can make.  To be faced with the end of your life must be quite terrifying and this probably accounts for why your OH has changed his views. NO ONE can say with any certainty what decision they would make unless they have been faced with the same decision.

Quality of life?  Who is to say what is quality of life to another person? 

I think from your point of view, whatever your feelings you need to support him in whatever decision he makes (IMO).  Personally, I would not want to have to base my decision on how other people felt if it was my life in question and I would want to spend as much time as possible with my children.

What a tough decision that you both have to face. On the face of it I think most people would choose quality of life over quantity, but in cases like these, if you choose the trial, you have no way of knowing in advance whether you might be one of the lucky ones who respond well, hence the terrible dilemna.  I hope that with mutual support, you and your oh can reach a decision which you both feel comfortable with and once made you will both be able to look forwards.  Thinking of you xx