Mums diagnosis of pancreatic cancer, some guidance please.

[an_optom]

Hello, this is my first post. I have been reading the experiences of fellow PC patients and family members and have found support just by doing this.

My Mother was diagnosed 2 weeks ago, PC on the tail and some lung metastases. We have a couple of appointments with consultants and will find out whats going to happen. They want to do a biopsy and another endoscopy just to confirm. I find the waiting is most frustrating.

My heart is breaking and i fear for the worst. I have read of experiences of fellow patients who have been overseas for surgery. We are looking keenly at this, and was wondering if anybody would like to share some details or stories.

I appreciate all the help.

AU

[Justamo]

Hello AU, so sorry to hear about your Mum. I am a bit of a beginner at all this too, but several members will jump to your aid immediately with their experience of different treatment options. I just want you to know that you will get plenty of support of all kinds from forum members.

If you have a specific question, ring the support line. Our nurses are absolutely brilliant and will help you in any way they can. Don't hesitate to ask them for help.

Kind thoughts,

Take care

Love Mo

[Dandygal76]

Hey AU

I am so sorry to hear about your mum. We all understand on here how desperate it feels to you right now and I am sending you loads of cyber hugs.

I understand the need to send your mum's scans off abroad and you can request they look at your mums case via their website (I assume you are thinking Germany?) and then wack CD copies of your mum to them using tracked mail (well that is what I did). This cost about £15 by royal mail. The hospital came back to us within days. The biggest wait is getting the scan pictures out of the NHS and I would request copies of these asap whilst you decide what to do. If you decide to consider nanoknife etc later then getting more than one copy of the scans will be useful later (not essential but just a thought).

I would brace yourself though... I do not know of any hospital that I have come across yet that will operate if the disease has metastasized - whether here or abroad. My dad was rejected from these institutions for mets to his liver. I am a second opinion girl all the way though and you have nothing to lose in trying.

It is devastating news but you will all find strength that you never knew you had.

xxx

[Veema]

Hi...sorry to hear the diagnosis...I've no experience of PC in the tail...my husbands was in the head of the pancreas. I agree with Dandygal in that I'd be surprised if surgery is an option due to the spread, you can but try and I hope you get some positive feedback.

Vx

[WifeampMum]

Dear AU

Welcome to the forum but I'm so sorry that you find yourself here.

It's a very sad fact that metastatic PC is currently considered inoperable and I fear that you'd be wasting your time and energy sending copies of your Mum's scans to Heidelberg. Do double-check this with the PCUK support line in the morning, they are extremely knowledgeable and very friendly.

W&M xx

[an_optom]

Thanks for all the support. I feared as much, what other options do I have? I don't want to lose her.

She single handedly bought me up since my father's demise, and is my closest friend. My tears aren't stopping.

[Dandygal76]

How is your mums health otherwise and has she seen an oncologist yet? The main treatment is to get chemo as soon as possible. Even though things seem dire there is always hope, even with this cancer. Some lucky ones survive beyond 5 years at stage IV. With dad he is on a trial that has just finished but is continuing with the chemo (Abraxane and Gemzar) because he has stable disease (which means it is not spreading or growing and that is a good thing with this disease). If you are in England I would look to get her on a trial (if it is her wish to fight this) which uses Abraxane as the chemo if you can find one suitable. I say this because it may increase her options later because Abraxane is not available on the NHS in England. So, your only chance for this treatment is a trial or private treatment (it is v expensive). This will then leave you with other options like Folfirinox treatment as a second back up treatment.

Dad's plan is as follows and he is on number 2 (bear in mind some of it not proven and it is personal choice and also that nano, liver ablation etc is privately funded and costly):

1) Trial drug with Abraxane and Gemzar

2) Continue Abraxane and Gemzar until cancer grows

3) Genomic profiling (to get a tumour profile prior to Nanoknife - well at same time to save costs). This is because there are some rare mutations with PC that can respond to other drugs. I have read that up to 5% can be genetic PC that is more easily treated. It is a huge long shot but one we consider worth a try.

4) Folfirinox in conjunction with Liver Ablation and Nanoknife (PC nurse can give you the details). I know your mum has mets to the lung but I believe these can be ablated.

5) Continue will Folfirinox as as long as it works.

6) Hopefully can get Onivyde if NICE approve it (or we will look to self fund but this is 2k every 2 weeks).

Dad was diagnosed in January and is still going strong (touch wood!) but it is a precarious situation that we know can turn quickly. Just because we have set this path does not mean it is going to work but we do see people do pretty well anecdotally and that is good enough for us right now. If your mum wants to fight back then hope is everything.

All of my saying that.. it is a delicate balance with all of this and my dad wants to fight back but everyone's path is different. The disease is different in everyone, the speed it grows, how it responds to treatment and how the patient tolerates treatment. I can say all the above and tell you my dads planned path in this but it does not mean it is right for your mum. Only your mum can decide that once you put the options to her.

I did write a thread for dad and so you will be able to see what he has done if you search my posts. If you want a more personal response then a few of us are on this FB page... https://www.facebook.com/groups/495134694006085/

Whilst we can help support you on this horrible path you need to bear in mind that things like nanoknife and ablation for stage IV cancer is not proven and therefore not approved by NICE. I always state it is because of a lack of data rather than it being 'disproven' but that is purely my opinion. I would run any plans by the PCUK nurses if you want qualified medical advice.

My response to you is just a steer towards the options you can look into but you need to do your own due diligence and research.

I hope that helps... it was a bit of a ramble but I know I would have appreciated it when I first started looking what to do for dad. x

[an_optom]

Thanks for all the advice. Im eternally indebted. Cant sleep.... read your reply Dandygal 5 in morn.

Ill do some research on forms of treatments and get second opinions. We have an initial appointment today, will report back.

thanks once again

[PCUK Nurse Jeni]

Hello AU,

Thank you for your post on the forums, and as others have said, not a place anybody wants to find themselves, but we are sure that you will get some very good support on here.

We are sorry to hear of your mum's diagnosis, and understand that waiting is a difficult time for you all. If you are waiting for more investigations which will tell you more about this, and you would like to speak with a nurse once these are confirmed, then please do not hesitate to get in touch on the contact details below. You can contact us at any stage.

Kind regards,

Jeni.

Jeni Jones

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: support@pancreaticcancer.org.uk

support line: 0808 801 0707

[Dandygal76]

AU, we know exactly how you are feeling and we remember those sleepness nights and utter devastation so well. It is very raw at the start but a new normal does emerge so hang in there. One of the worst things is this initial waiting for treatment / deciding on the best course of action. I never thought we would have an okay day again in our family but we have and we do. So hang in there and take one day at a time. x

[an_optom]

Thanks for the kind words dandygal and jeni. We have had an initial meeting And it's not good. She's been given palliative care. Absolutely shattered.

[Guest]

Dear Au,

I am so sorry to hear about your Mum and about you. The patient gets lots of care from the medical staff but there is very little out there for those who have to learn to live with the diagnosis. We all understand that you want to save your Mum and it is normal to be glued to the internet looking for any slim hope of treatment. We do this for the patient and, in as many cases for ourselves. There is absolutely nothing wrong in this and we all do it, none of us want to accept that this is a life limiting disease, it is something we come to terms with in time because the evidence is before our eyes BUT, there is a great deal that can be done to make the patient comfortable, give them some time, sometimes weeks sometimes years, and or give them quality of life. Whatever path is chosen by the patient, our job as carers and family is to support them in their choice to the best of our ability. I don't underestimate how you must be feeling or how hard it is to accept the diagnosis and neither does anyone else on here.

The waiting is hell. I don't know why they don't do the biopsy much earlier as it is the only guaranteed way of diagnosing the exact cancer, scans and poking and prodding are more about where, what size etc. PCUK and some of us who have lost loved ones are campaigning for swifter testing and feedback. I have a meeting with the hospital where my husband was diagnosed coming up in December to discuss just this. You do need to keep on top of the appointments, feedback and schedules because you have one patient and they have thousands.

I hope you will find the support and outlet for your feelings here, please know that we understand and are here when you need us, whatever the reason. You will know from reading the threads that although each case is pancreatic cancer there are many manifestations of symptoms and treatments and coping mechanisms so don't be shy to join us and share your story day or night if it helps.

Much love to you and your Mum, Marmalade xxx

[an_optom]

Such beautiful words marmalade. If only I had the like to reply with. Nonetheless, I'm not going to lose easily. I'll make sure my family and my mother fights this thing tooth and nail. I'm going to try and follow some pointers dandygal mentioned and push for the best my mother can have and cope with.

Will keep you posted.

Lots of love

AU

[Proud Wife]

The very best of luck to you AU. Very wise words from our fellow forum family members. Thinking of you xx