Any advice will be greatly appreciated

[Levi1]

Hello,

My mums (54 years old) been diagnosed with this awful condition and would love any advice on the road ahead. I've spoken with a great lady 'Jeni' on the phone already and she gave me some great advice about sorting the creons out now before my mum loses anymore weight/strength etc. Which within 2 days now she feels much better eating which is great news-the GP was reluctant to give it this soon but after reading the emails that I took from Jeni he soon listened and prescribed them.

So now it's the horrid wait for the first meeting with the consultant.... What we know so far is that it's inoperable as its around the celiac artery and Chemo has been mentioned so far.

I've looked at types of chemo and Folfirinox seems to be the best option??? Is this something we could ask/request for?

Basically I've googled everything and anything and now I don't know what way to turn so any help would be so much appreciated.

Thanks

Levi

[jacqui01]

Hi Levi

Like your mother my husband who is also 54 years old has recently been diagnosed, I am sure like for you it was a complete shock, I won't bore you with the details but I do hope your mothers diagnosis was easier than my husbands, he was told by the GP he was an alcoholic In fact he was jaundice due to a blocked bile duct, then to be told it was nothing sinister, I could go on and on. My husbands tumour is also inoperable as it has spread too much along with it being too close to the main blood vessel, John has just finished his second cycle of Folfirinox so it's too early to say if it's doing any good.

Just wanted to respond to your post as its my first one too, if I could just give you one piece of advise do not sit back and wait for appointments keep phoning it drove me up the wall when everything was a two week waiting game.

Things should run a lot more smoothly once you get to Onconolgy

Good luck and stay positive

Jacqui

[Levi1]

Hi Jacqui,

Thanks for your reply and so sorry to hear about your husband.

I know what you mean about waiting, it's so frustrating. As I know what my mums like I went to the GP with her to ask for the creons to help her digest food, the doctor was reluctant to give them and mum being my mum said she didn't want to upset anybody and step on anyone's toes. That's why I went to give her the push and fight for what she needs.

I think it's going to be a long road ahead but now once over the initial shock of it all, hopefully my family can stay strong as it always has been and stay positive.

Good luck to you and anyone else reading

Levi

[Marieb]

Hi Levi

I too have very recently been diagnosed with Pancreatic Cancer (I am 45) and have found this forum invaluable already. The support and knowledge on here is amazing and I am sure you will find it a life line as things progress.

I too had lost a lot of weight (3 stone in 8 weeks) and with the advice on here got myself on Creon, I was also prescribed a short course of steroids by my Specialist Nurse. The combination of the two (steroids I understand stimulate the appetite) have quickly meant that I am able to eat and drink again. I was also given anti sickness drugs to combat nausea when needed. My weight is now stable which is really important in preparation for chemo.

The thing I have learned very quickly is that it's of utmost importance that your mum is proactive in her own care, knowledge at a GP level of PC does not appear to be good. I am lucky that my local hospital (which is rural) have been on the ball in terms of information and support from the initial diagnosis 2 weeks ago. I have an Upper GI specialist nurse who I can call during the day for advice. I wonder if your mum has the same...there do seem to be different approaches depending on where you live.

I have my a procedure tomorrow to get a biopsy which will then allow them to provide treatment options, the nurse has given me information on the different cancers and different types of chemo etc. this site also has some really good information on the home page.

Keep in touch with us all and hopefully we can support each other through this, sharing our experiences will provide us all with the knowledge we need.

Your mum is very lucky to have you supporting her and perhaps providing the courage to challenge the clinicians when required.

Take care and keep strong. Marie x

[LMD]

Hello Levi

Sorry to hear of your mum's diagnosis and well done to you for finding this site and for getting in touch with the nurses. The information on this forum is so helpful. The nurses and everyone here are a great support. Once you've had the meeting with your Mum's Oncologist hopefully you'll have more answers regarding the treatment options and you'll know what the plan is.

Try and stay positive and strong for your mum.

Thinking of you x

[Levi1]

Hi Marie,

Thanks for your story, I find hearing people's stories and any information so helpful and I'm finding strength with it all. My thoughts are with you tomorrow and I hope all goes well!!

After reading these we 'bugged' the doctors and specialist for the appointment. Which we've now found out we have been referred so at the 'top of the list' we should know more tomorrow on dates.

Again I hope all goes well tomorrow.

Levi x

[Sueoliver]

Hi Levi I am sorry to hear about your Mum. You will find this forum helpful I know I certainly did. This is an awful cancer and your Mum is lucky to have you fighting for her. My Mum was 76 when diagnosed and coped with folfirinox well although it was at a reduced dose. Once you have seen the oncologist you will have a better picture of treatments. Ask as many questions as you can and don't be afraid too.

I have supported my Mum every step of the way and I know you will too. Stay strong and look after yourself as well that is important!

Keep posting we are all here to help each other.

Love Sue x

[Levi1]

Thanks for your support lmd and Sue. To be honest I'm not usually one to come on to forums etc but just the little I've done so far has defiantly given me strength and appreciate all your help.

We have just heard we have an appointment tomorrow to see the consultant after my sister ringing the consultants secretary God knows how many times-but all worth it!!!

Also with my mum being petite (7.5 stone) after losing 16lbs we've purchased some supplement shakes (ensure plus) to hopefully build her back up again. Has anybody tried these or similar and how's the outcome been??

Thanks again for your support

Love to all and thinking of you Marie today!

Levi

X

[sandraW]

Hi Levi,

Sorry to hear about your Mum,

You shouldn't have to buy the supplement shakes, when you go to the hospital tomorrow, ask for an appointment with a dietician, if they don't offer one automatically, and she will prescribe some for you and then you will be able to get them from your GP.

My husband found he liked the Fortesip extra ones, they are smaller and he found that as they were smaller, he could manage a couple a day between his meals. Your Mum will need to take Creon with them too to get the benefit.

Good on your sister for her persistance, that's what this journey takes, and lots of it, I used to say when ever I rang to chase up appointments, I know you have lots of patients, but I only have one husband and so he IS a priority.

I am not a forum person either but I have found this place a godsend, it has helped me so much, as we are all in the same boat, its just some manage to stay afloat longer than others.

take care sandrax

[Levi1]

Thanks for the tips Sandra! We will definitely mention this tomorrow if nothing is said before hand! All these points really do help and anything anybody else can think of them please share them this way.

I'll let you know the outcome tomorrow ASAP. Take care everyone and thanks again for all of your support! X

[Marieb]

Hi Levi

Great to hear that things are now moving for your mum. The waiting and not knowing what you should be doing for the best really is awful. Thanks for thinking of me yesterday, unfortunately it did not go to plan and they had to abandon the procedure for my safety. So I am no further forward and await them discussing and deciding on the best way to proceed to get the biopsy.

I hope the appt today goes well for your mum, she is lucky to have the support of you and your sister. Take care of yourselves as well as her. I know all this can be really hard on family and friends who a lot of the time feel helpless, but in my experience, just by being there for her you are providing emotional and practical help that is invaluable and will her her fight this. Take care x

[Levi1]

Sorry to hear that Marie, i hope they can sort out the next step for you as soon as possible to get things moving!!

I've had bad news today as well (just seems like no rest for anybody) the consultant has told us it's T4. I believe it's on the pancreas and the surrounding blood vessels. He said it's about palliative care now, mum has to have a biopsy which will be within 3 weeks (which seems like bl*#dy ages)

To me and the family it seems too soon just to seem to 'give up' trying to kill the cancer?? I don't really know if when we are on palliative care there is a chance of it shrinking with the chemo enough still. Or should we contest this and ask for a second opinion. Or if we go private would they opt for the full treatment before going with the pallative care?

I'm just so lost now with it all and don't know where to turn as my mums is still 'normal' with next to no symptoms and her back pain can easily be controlled with basic pain killers.

If anybody has got any thoughts, no matter how small, then please share it this way as I would take any help at the moment.

Levi x

[Sueoliver]

Hi Levi my Mum also had involvement with the blood vessels and at her very first oncology appointment the oncologist said we were looking at 8-12 months as it wasn't curable. He offered folfirinox as she was healthy even being 76 years of age! I think you should ask for treatment as it can keep the cancer at bay! My mum tolerated it well and the tumour didn't grow for quite a while. She also had 2 stents fitted. This certainly hasn't been easy but we have had some good times and I do believe the folfirinox helped with this.

Things aren't so good at present but all I can say is fight her corner and be persistent! I have been and have had good responses from the health service. I've even written to my GP and he has helped as well. Make sure she takes her creon as it will help and ask for fortijuice or fortisip to be prescribed.

Do you have a local hospice as they are really helpful. If you can talk to a community pallative nurse you will find them a great help.

You should also ask to see a dietician when you are at the hospital if it hasn't already been offered. They will advise your Mum on foods to keep her weight up.

I have found this forum a godsend so please keep posting. I wish I could help you more but please just keep up the support for your Mum and never give up! It's not easy but it's worth it.

Take care , love Sue x

[Levi1]

Thanks for all the info Sue, I will most defiantly pursue these points and will do anything I can to make things better for my mum.

Have you or anybody else reading know anything about nanoknife? What is it? Does it cure cancer? Can it be used near the blood vessels? Prolong long life in a dignified way? Where and cost? Etc

Thanks again everyone commenting on your support, it really does help! I hope you all are well

Levi x

[Sueoliver]

Hi Levi,

Steve who is on the forum recently had nanoknife you can read his story "so far so good" on here.

Sue x

[WilliamS]

My Dad's Consultant told us that Nanoknife is available on the NHS but the protocol is that the patient has to be stable on chemotherapy first. There is some info on it here -

https://www.kch.nhs.uk/news/public/news/view/16891

It is also available privately in some hospitals

[Levi1]

Thanks very much for the information William, this is something we will defiantly pursue.

This nanoknife treatment seems like such a life line and can give us that extra bit of hope what we need. Of course it's not guaranteed but it's much better than the dull statistics without it.

We spoke to the palliative nurse, she seems to think we should get a date for the biopsy within 10 days (much better than the 3 weeks the consultant said) I'm hoping we can get the wheels turning for chemo too just in preparation for after the biopsy.

Again I'm so thankful for this forum and the nurses for all your help.

Levi x

[kittycat]

Hi levi, my husband has arranged to have nanoknife at the Hospital next month, it was previously arranged for 1st July but he was hospitalised and we had to rearrange. We feel that this treatment is the way forward and that we have to go for it as we are pretty desperate with the outlook so bleak for this dreadful disease. We did quite a lot of research and read others experiences on this site which was encouraging and the consultant at the Hospital was excellent. Our oncologist has also been very helpful which has made things easier. I see that this is now available on the nhs but we are already booked in privately so will go with that.

Good luck.

Sue

[Levi1]

Thanks Sue,

Us as a family feel that nanoknife is the way forward as well. I feel that I've read that much about it now that I could do the operation!

We are going to pursue the nhs route as hopefully as it hasn't spread to the liver we hopefully would be excepted for it. If not then our family will pull together as always and make the private route happen.

Good luck to your husband Sue and please keep me updated on his route on beating this horrid cancer!

Levi x

[Marieb]

Hi Levi

Just catching up on your posts today as there has been a lot happening on my side of thing.

The last time I posted my EUS had been abandoned as the doc felt continuing was unsafe. Hearing that no biopsies had been taken was hard. However they turned it around very quickly and tried again, 2nd time round with more information and involving the full MDT. Thank fully it was successful and I met with my Oncologist for the first time last week.

I get a Hickman Line fitted and start on Folfirinox on 3rd August (they are saying it inoperable and I have a year) as palliative care. I am determined to prove them wrong and beat this awful disease. I too am looking into Nano Knife and plan to discuss it with my Specialist Nurse on Wednesday.

I hope your mum is making progress and you are keeping strong. I know it's difficult for family and friends. it would be good to hear from you as her case sounds very like mine.

Marie x

[Didge]

Marie, we were told that on folfirinox the average prognosis was 11 months but that includes the stats of people who have to stop soon after or have no response. I know you're not anyway, but please see this as an average not a limit. Many people do much better! X

[Levi1]

Hello all,

Just to update you guys, mums had her biopsy and has confirmed its the adenocarcinoma. She's having a second cat scan today and meeting the oncologist (finally) on Tuesday. They have mentioned chemo radiotherapy but I'm sure we will have a definitive answer on Tuesday. We have been referred for nhs nano treatment and that's going through the system-hopefully we here back very soon about that too.

Mum herself is struggling, finding it hard to eat and in pain (back and stomach) and constantly tired. Being such a strong lady she has been going work when she can and fighting between through it. Thankfully for the first time in 6 months she managed to put weight on (2lb) this week, it's only small but I feel it's a step in the right direction. Hopefully her diet/enzymes etc are working and this can carry on.

We are trying to stay strong and positive but there are most certainly times you just can't help but to cry.

I hope you all are well and I will update as soon I can.

Levi x

[WilliamS]

Hi Levi,

How is your Mum? Did she get a date for Nanoknife? I hope her chemo/radiotherapy is going well. Best wishes.

[Marieb]

Hi Levi, how is your mum getting on? Would be good to hear how she is progressing and any news of Nanoknife.

[Levi1]

Hello all,

A quick update on what's going on my end. We have been referred for chemo radiotherapy-this means mum has chemo for 3 months the radio for a month afterwards. So far on chemo it's not been great as by the third week on both cycles her bloods have came back too low to have it. She's been up and down on it but always staying strong willed.

We had a letter a few week ago from the MDT and they stated a 'C' word we all would like to hear which is 'cure'- to explain the reason for the radiotherapy is to try and cure the cancer where as chemo alone usually means palliative. So we are holding on to everything we can at the moment.

With regards to nanoknife we didn't qualify on the nhs as they said it was too big- even though the size Guide we have seen we are sure it's small enough. We've contested it but nothing has come from it as of yet. Mum doesn't want us to pay for it as she is hopefully about the radiotherapy.

All the family are trying to keep positive even though it's obviously hard when she has a down day, to me it still doesn't feel like it's real and it's all going to go away.

I hope you all are as well as you can be

Levi x .