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Newbie just searching for something or answers or support


deafy
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Hi all, the strange thing is I often don't know what I am looking for whether it is just for a discussion, actual support or answers to questions that there are none for.


I'll start with a brief synopsis. I was diagnosed in February this year after two years of various concerns which included removing the gall bladder and dramatic weight loss. It occurs to me that if I had been to the GP with all my symptoms at once it might have steered them towards a diagnosis sooner, e.g. the high sugar count I had actually got the GP to recommend loosing weight to ward of type 2 diabetes ( if only they knew then 90kg down to 66kgs). I have just had cycle 11 of a 12 cycle folfinox, 1 more to go before a break, and the cancer has shrunk and the markers are down.


I am concerned/anxious about what may happen next, I've got a check scan next week so fingers crossed. Creon helped the weight loss, back to 78kgs, but the treatment itself gives me a good kicking at times. The dose had to be reduced and I've ended with 45% if the initial dose.


So whilst I consider myself fortunate to have responded I'm still worried how the future pans out. I do have lots of positives to look forwards to and I think my care has been wonderful from both the cancer centre and my pallative worker.


So without a definite question or other enquiry I'm ending this first post, however if anyone wants to point me in any particular direction I would not mind the response. Good luck to ALL

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Hi Deafy,

Welcome to the forum the place no one wants to be but where you will gets lots of support and if you should need it help.

Its great to hear the cancer has shrunk and that the Ca19 markers are down, good old furry fox as someone nicknamed it on here as Folfirinox is a bit of a mouthful.

As for what comes next who knows, hopefully you will have a break from chemo when you can build up your strength, and continue to put on weight, if that's what you want of course. and get your life back.

I hope the scan results are good, and please keep in touch and let us know how you are doing, we all just offer support because we all understand just how scary all this is, take care sandrax x

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I would say just don't give up...keep taking whatever treatment is offered as long as you can tolerate it...my husband has tolerated 24 cycles of folforinox at full dose, but it now seems to have stopped working for him, so we're trying something else...I hope he tolerates this as well.


No one knows what the future holds...and everyone is different. Someone has to be the positive statistic.


Lots of luck


Vx

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Hi

thank you Sandra And V for your replies it is encouraging to receive some nice positive answers and for you to read a bit between the lines.


I suppose it's sometime worrying to ask peoples views and experiences just in case they touch on an individual nerve. I certainly don't intend to give up at this time although after my "journey" I can understand why some people would prefer to not take excessive steps.


I'll keep some information coming about my progress and if all goes to the normal routine I expect to go chemo downhill from Sunday until Wednesday when I'm normally able to do some bits again.


Thanks again for your replies and continued good fortune to everybody be they patient, family or professional.

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Hello Deafy and welcome. I'm so very sorry to hear of your diagnosis.


Your next scan is going to be very telling and it might help you decide on next steps. The only thing I would say is and I speak from the heart through personal experience....if the scan results show any type of change - no matter how small, discuss carefully the option of not having a chemo break. If I could turn the clock back I would. The signs were there but my husband chose to ignore them and the cancer quickly took over. His oncologist saw them too but felt a chemo break was right. I disagreed but had to respect hubby's wishes and now it's too late.


Please let us know how you get on, we will all be routing for you. We are due a success story and there's no reason why it can't be yours.


Take care

PW xx

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Hi Proud Wife

thanks for your reply, I have seen some of your other posts and understand some of your story.


I will discuss the ongoing treatment options with my consultant who is also part of the research team at my cancer centre so they have a broad outlook over possible treatments.


The down side of continuing straight on with the chemo is the cumulative effect ist is having on me. But I promise to discuss carefully my options.


Thanks again for your kind words and please keep your spirits up

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Hi Deafy


Welcome to our little community where there really is so much support and understanding. So many personalities (all nice) and perspectives and it has really helped me deal with things and to help my dad on this perilous journey. I am so sorry you have got PC but it is great that you have had a response and tumour reduction. As you may have read, my dad is on a trial and then going on to have Nanoknife and so he is pushing back against this bloody thing and fighting the good fight alongside you.


It is nerve racking heading to scan time isn't it? I find it the worse time but hopefully you will be back on here and giving us yet more positive news that you have more reduction and then you can breathe with relief and carry on living. That is what we seem to do now... we are living between the scans.


This forum really is great, we celebrate the wins together and hold each other up when things are not so great. I have been gently guided back from the brink of madness and distress to a more even path on many occasions by my fellow members on here.


I am wishing you the very best of luck for your scam. xx

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Hi Dandygal

thanks for you reply I have read some of your other posts but will endeavour to catch up on your story.


It is my anxious time even more so as I'm likely to start a new direction following the planned break.


I've jumped around the forums and threads and this has given me some great perspectives on things especially as I have no local PC contacts (excluding professional).


If I'm up to it I'll attempt to ask some more direct questions regarding options on chemo breaks, its Sunday after chemo Thursday so I'm pretty fuzzy and typing more backspaces than normal so that's it 4 now,


Thanks again - keep on keeping on

D

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Hi Deafy,


I think you would have to be odd not to be anxious especially when scans or other indicators are looming and of course you also think about the future sometimes, it's only natural. The right now is that you are still here, you have managed the treatment despite having some low times and you still have options in the armoury as time goes on and everyone (including me) will support you in that and will be willing you on and praying for the treatment breakthroughs that we are sure are there and, if you ever decide that fighting is not what you want then you will get lots of support with that too.


We are all here to support each other on this journey and everyone's journey is different


Much love


Marmalade xx

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  • 2 weeks later...

Hi all,

just to let you know. Scan results have shown NO new sites and NO increase in size of the blighter. I had to wait until Wednesday to see my consultant (scan results were on Monday).


He has proposed a course of radiotherapy with a view to operating and the follow up chemo.


This is amazing news to me as I was initially told the LAPC was inoperable. So more hope has come my way for which I am very grateful.


Even more short term relief was given when it was decided to forgo the last cycle of fuzzy fox (love that label) as I had got to the stage where it was difficult to get my legs to work properly and the fatigue was hard to cope with.


So a PET Scan then my holiday with family then radio therapy, another scan and see about chopping the git out.


Obviously a long way to go still but everything crossed and it shows hope often appears when least expected.


All of my very best wishes to everybody

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PCUK Nurse Jeni

Hello Deafy,


Thanks for your update, with such really good news! Congratulations, and lets hope this good news continues for a long time.


Its really encouraging to hear your CT scan results. And even better that they are hoping that this can become operable after radiotherapy! As you say, hope has been offered. Its just great to know that options are being considered and worked towards. It does make a difference.


Sounds exactly the right decision to forego the last dose of chemo - I hope that your legs begin to improve as you have more and more time off the oxaliplatin. If you find they are not improving, do mention it to your oncologist, as there may be things they can do.


I hope that you have a wonderful holiday with your family, and come back refreshed to face the next leg of your treatment.


Kind regards,


Jeni Jones

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: support@pancreaticcancer.org.uk

support line: 0808 801 0707

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That is fantastic news! I am so pleased for you... you are inspiring and provide every hope to those fighting this pesky battle at an initial inoperable level. I really hope you become a great success story on this forum. Not sure of your finances but have you thought of nano knife with the radiotherapy... in for a penny in for a pound so to speak and when you are so so close. x

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Hi Dandygal


I've not researched nano knife or spoken with the docs re this. It is something that I will mention when we get around to actually discussing the potential op.


Regardless the radiotherapy is really likely to do some good. I am fortunate in that the "sub type" of my cancer is one that seems to respond to treatments and that I'm being treated at a cancer centre that also does research. I believe that this gives the consultant more options to consider and in general keeps them more optimistic which of course effects the way their patients feel.


Well I'll certainly let you all know what happens and that hope can always be found to help others through their own experience.


Many kind regards and good fortune to all (oooooo)- that's lots of cuddles if you were wondering lol.

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Have you had your tumour profiled? I would be very selfishly interested if you have... we are doing this for my dad now. There is also a blood profiling I saw online that was promising. You know I wish you the absolute best but I would not mind some more detail of your treatment... if you can manage it of course. I would take no offence if you could not. x

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Howdy DG


I fully understand your desire to gain as much information as possible to put you in the best position to help with decision making. I have not had my git (affection abusive term for PC) profiled.


Where I'm treated they can carry out profiling but also have experience of how tumour sub types react to treatments, they use this knowledge to determine the likely hood of effective treatments. I discussed getting a full profile done but my consultant (who himself carries out research) advised that in my case it would not be likely to add any useful information, it was a reasonably in depth conversation which let me have to confidence to agree.


I did contact the Glasgow research people as well so that I could understand their viewpoint and my potential suitability.


Sorry if this is not useful but as we all know each persons case is different. I wish you and your dad well, you so remind me of my daughter who has been so supportive to me and is even jumping out of a plane in September to raise funds for PCUK


If there is anything else I can help with don't be afraid to ask.

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Hi Deafy


I'm another one who wants to know as much about PC as possible and I'm curious about how your tumour was sub-typed if you didn't have it profiled. I was under the impression that the sub-typing could only be done by molecular profiling. Would you mind sharing this with the forum? (No worries if you'd rather not.)


Thanks and I hope you have a super holiday.


W&M (ooo)

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HiW&M

As I wrote earlier I have not had molecular profiling done. Because of the work my consultant has done and my enquiry to him we had a discussion about profiling and sub types of tumour and the differences in the ability to react to treatment.


So to make it clear I do not know what sub type I have only that it is likely to be one which reacts positively to treatment.


Sorry if I gave any other impression, often it is difficult to get the whole story across without quoting the complete situation.


Keep asking the questions though as other answers may be more helpful


Many regards

D

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Absolutely no need to apologise D, I understand. In my hubby's case there was no way to tell how he would respond to treatment apart from 'wait and see'. Very fortunately he had an excellent response....chemo followed by chemoradiotherapy made him operable and he had a Whipple in Feb 2016.

I hope that you follow the same path and become operable too.

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D, I really appreciate your reply and all that matters in this fight is knowledge and knowing what your consultant said is helpful. So many different perspectives and I want everyone of them!


Thank you for your kind words, I would be interested in sponsoring your daughter if she has a Just Giving page. Anything to help the good cause! I know it sounds silly but it meant the world to me when people from this forum sponsored my sister. Don't feel obliged to post the link though.


xxx

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