Abraxine, Germcitabine + MM-141 trial - worried wrong choice

[Dandygal76]

Hi

I am new to this forum.

Sorry for the long ramble... I feel the need to ramble in the context of the question.

My dad is 62 years old and was diagnosed with Pancreatic cancer at the beginning of January 2016. At first they said it looked operable and so he went for more scans that culminated into a PET scan where they said it had spread to his bones - tiniest amount. This was on the 5th February (please bear in mind we skipped a 2 week MRI queue by going private so this date would have been 2 weeks later). Then we had to wait on the referral from Oxford to Milton Keynes for chemo to start. This letter came 2 weeks later for urgent (their words) chemo to start at Milton Keynes and half way through the letter my dads name changed and was wrong - this was the letter stating he had 6 months to live, not just any old letter. I know in the scheme of life this is a small thing but it added to a growing view that my dad was just a number and not an individual in their assessment of him. To not have a quality control to check a letter via their secretaries was quite unprofessional (I know mistakes happen - we didn't make a fuss!). So, we waited for the urgent referral to see the Milton Keynes oncologist and chased that towards the end of February only to be told the oncologist is on holiday for 2 weeks and his secretary will not book in an urgent appointment without his permission. We were also reading there is a 4 week wait for chemo on the NHS.

I know I do not need to tell you but the waiting game around all this is painful to say the least but I was already desperate from the 5th February and looking for a way to fight back that was not the NHS's view of get your affairs in order, you are going to die.

My dad is extremely healthy. No weight loss, no other symptoms except a pain in his back. When Oxford said he would have 6 months to live without treatment it just did not compute with him. So, being the google queen that I am, I set about researching alternatives with the addition of also googling one day 'stage IV pancreatic cancer survival stories'. I am glad I did, I know the chances are remote but some people make it back and why should my dad not be the lucky one!

So (bear with me!), during my research I looked into trials and found and got my dad assessed and enlisted (fully funded and all expenses paid) into a new stage II trial. Their attitude was so different - their first words were literally 'right let's fight this thing and beat it'. I would have given up everything I own just for someone to say that and give us what remote hope there is. My dad wants to fight and until he says otherwise I will find every opportunity for him to do so. The trial is for MM-141 plus Nab-Paclitaxel (Abraxine)and Gemcitabine. He has a 66% chance of getting the new drug (mm-141) and a 33% of getting the placebo. Either way he gets the two chemo drugs and last Wednesday started his chemo at last. What a relief it was.

Around the same time though the NHS came through for us and he met with the oncologist last Thursday who said he is eligible for forfirinox. We have decided though to stay on the trial because it will be his only chance to get Abraxine and then the consultant said he can get Forfirinox on the NHS.

However, now I am beating myself up that this was the right decision. The Milton Keynes Oncologist is ordering in forfirinox for when the trial ends or if dad is told to leave it earlier because it is not working. I have read the forfirinox is more effective than the chemo my dad is having by a couple of months survival. However, there has been a paper published in January that stated having Abraxine and Gemcitabine followed by forfirinox has a greater survival rate than the other way round. However, you have to be strong enough to still have the forfirinox and so by that very indication surely, statistically, that group would have more success? Also, as there is a remote chance of beating this back enough for an operation should we have gone for forfirinox on that basis?

The other reason we chose the trial is because the quality of care is amazing. Dad calls a number and a doctor will call you back within 10 minutes (obviously because the MM-141 is unknown side effects the care is 24 hours) and just simple things like the care in Harley street (food, nice cups of tea) really do make the whole process more bearable. But, the other reason is I said to dad that the monitoring is better and he will get his next scan in 6 weeks. Therefore, we will know quicker if it is not working this way to enable us to fall back to forfirinox more quickly and he will be less eligible for a trial later if he goes to NHS now. I understand the NHS wait 3 months to scan and with our experiences with that so far we have lost confidence to trust that.

I am beating myself up constantly. I have waded in there and created these options and now I feel responsible if it is the wrong choice.

I think I already know there is not a right or wrong answer to this but - what would you have done?

Thanks you and sorry for all of you who are also dealing with this terrible cancer.

Edited July 27, 2016 by Dandygal76

[Didge]

Hi Dandygal. I think you've made a brilliant decision. Your dad has got on a trial where they are actually testing a drug which must have already shown promise and as you say, even if he gets the 'placebo' he will still be getting a good treatment. Plus if the scans show it isn't working he will still be eligible for folfirinox. My partner had folfirinox for a few months and it worked well for a while but when he got to the stage of trials he was too ill for any of them. We all beat ourselves up over decisions - should we have chased appointments more aggressively, should we have chosen a different path etc etc. Truth is this is not a 'sliding doors' movie - we can't go back and see what had happened with a different path. There is no cure with the current drugs so I see trials as the only hope of a breakthrough. Good luck to your and your dad! Didge x

[Dandygal76]

Thank you for your reply Didge, I really appreciate it. The whole thing is a minefield and overwhelming at times. I hope your partner is coping and not in pain. x

[Didge]

Sadly my partner said goodbye last summer. He chose not to go back on chemo at the end. But there are promising treatments in the pipeline so there is hope coming for those still in the game x

[MSH]

We can only really know the implications of our decisions by looking back on them, and even then it's not always clear. With that proviso I would go with the conventional treatment, at least in the first instance. Folfirinox doesn't suit everyone but it can give many months of good quality life. There's nothing to say that MM-141 won't be more effective, but it's a huge unknown. Also I would be very wary of anyone giving the impression that metastatic pancreatic cancer can be beaten.

Here's hoping your father responds well to his treatment.

Mark

[Dandygal76]

Oh I am so sorry for your loss Didge, thank you for still taking the time to reply - I really appreciate it.

MSH, I understood that the treatment my dad is getting in terms of chemo is a conventional treatment plus the potential for MM-141. We would never had gone for just MM-141 on its own. I understood that the Nab-Paclitaxel (Abraxine) and Gemcitabine that he is getting as well is the standard starting point in most European countries (but the NHS won't fund Abraxine because it is too expensive) but the information out there is just so conflicting. I am torn and it was quite interesting that the two responses had such different views. It reinforces to me perhaps there is no right or wrong in this.

Also, it is probably my wording - we are under no illusion that this is terminal but the trial staff treat it mentally like it isn't - like dad could be the rare lucky one that gets a cure or shrinks enough to be able to be operated or one of those that live 4 years. It is a mentality thing and my family and my dad need that more positive attitude right now, especially as he is so well in himself - it is part of what I searched for. My 16 year old does not have his own father and my dad brought him up with me since he was a baby and they are extremely close. It is such an awful age for this to happen. I am sure there will be many more dismal months when everyone's hope is crushed again but for now everyone is where they need to be mentally on this journey and that only helps my dad not having to deal with absolute family meltdown that did occur. Things are normalish again now and I will take a few more months of that with them all. My dad went to see one of the top international consultants on this who referred him to the trial (my mum works for the NHS and we were told by doctors to run to the consultant) and the trial is run by a very professional institute and it is funded by Merrimack who are at the leading edge of cancer research.

I suppose with every decision on this we are all between the devil and the deep blue sea.

Thanks so much for your input. I think just having the chance to put it in writing and hear what you both have to say seems to help me make sense of things more - if you get what I mean.

L

[Guest]

Hi L,

Just wanted to welcome you to the forum. I hope you will get the support you deserve here.

Having read your post, I think you are amazing for what you have done for your Dad. I am sure he is very proud of you. My Dad too was diagnosed with this and stage 4, he was 61 when diagnosed. He took it very hard and he too desperately wanted to live.

I researched comstantly, like you for anything that can help.

My Dad tried Folfox, it did absolutely nothing whatsoever for him, didn't work in the slightest. Everything is different for each individual.

Dad also had Gemcitibine with a Maestro Th302 trial. Every scan showed shrinkage, both on his liver and pancreas. Whether he really jad the trial, or if it was a placebo, it worked for him, and for his state of mind.

How your Dad feels in himself is what is important. Keep researching, keep doing all you possibly can. Keep loving your lovely Dad. I think you are wonderful.

Leila xx

[Dandygal76]

Thank you so much Leila, I really appreciate your kind words. It has been such a blow. My dad is sporty, never smoked, no alcohol - he doesn't even drink caffeine. It is a bitter pill for him to have been diagnosed with this. He kept himself healthy to make sure he would be around for my son. I think I will follow what you say... whatever is mentally right for my dad right now is the right choice and just stop beating myself up over it. Thank you. x

[Proud Wife]

Hi Dandygal, I've said before on this forum I wonder what the trigger was for my hubby, I thought perhaps smoking or diet but then you hear stories like your dad who has led a healthy life yet he couldn't escape PC either.

My hubby is only a few weeks away now from first anniversary of stage 4 diagnosis and did very well on Folfirinox and will in due course, when needed, start on Gemcitibine and Abraxane. His oncologist has said he can always go back on Folfirinox if he needs to so the moral of the story is, there is no right or wrong as others have said and everybody responds differently to treatment. We are very fortunate enough to have taken out private medical insurance before he was diagnosed and as much as I am in awe of the NHS and the service it continues to provide with budget cuts, you don't get that immediate help as you do with either private insurance or trials.

So to try and put your mind at rest, I do happen to think you are doing the "right" thing and remember hindsight is a wonderful thing. If we were faced with the choice you have, it would be the trial every single time because your dad is getting 2 good drugs and the possiblity of a trial drug and if he doesn't respond, he can always quickly change to folfrinox.

It has taken me 11 and a half months to realise that if hubby is feeling well, eating well and not losing weight, that in itself is a result given that he's a member of the club that no-one wants to join, so try to think the same about your dad. My hubby too only had back ache but it had spread to his liver and was told without treatment he wouldn't have seen the end of last year which was the most awful shock I've ever had in my life.

Hope this helps. For the record, I happen to think you are a wonderful caring daughter and I am sure your Dad must be very proud of you. Just keep telling yourself you are doing all that you can and more than that, you just can't do! Good luck xxx

[Guest]

My Dad was diagnosed aged 61. He did not want to die. He fought with everything he had. He had always had a healthy lifestyle too, and then bang, a death sentence. Pancreatic cancer is cruel.

Your Dad didn't have to accept this trial, he chose to. Don't beat yourself up over it. From what I have seen, you are doing the absolute best your can. I remember when they offered my Dad the trial, I wasn't too keen, I was scared it would minimise his chances. I wanted him to have folfrinox from the start, as that is what most be here have done. If Dad didn't chose to take the trial, he would have passed away a lot earlier than he did.

Your Dad loves you, and he must really knkw how much you love him, especially now.

My advice to you, keep fighting for him. Go to important appointments with him. Question everything. Don't feel shy in asking, ask away, it is your right. Keep researching for your Dad. I believe so much in state of mind for the patient. It doesn't just affect the mind, it will affect the way his body works as well.

Leila xx