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Proud Wife
Posts: 733
Joined: Sun Jan 17, 2016 9:28 am

Re: My Mum - stage IV

Postby Proud Wife » Thu Nov 24, 2016 6:33 pm

Thank you for updating us, I was wondering how your mum was getting on. I am pleased that your mum's been admitted, I'm presuming they will attempt to clear the obstruction with a stent so that your mum's made more comfortable. The jaundice would be making her feel rather poorly I suspect.

keep us posted when you can and don't forget to take good care of yourself too!

lots of love
PW xx

Veema
Posts: 503
Joined: Mon Feb 02, 2015 5:35 pm

Re: My Mum - stage IV

Postby Veema » Thu Nov 24, 2016 8:00 pm

It did sound like that...hope they can successfully stent it, because that will make a huge difference to how she is feeling.

Sorry to hear about your Dad too...its a bloody awful disease...its rife. I hope there is something that can be done for him.

Much love...

Vx

Ruthus
Posts: 177
Joined: Tue Nov 17, 2015 2:39 pm

Re: My Mum - stage IV

Postby Ruthus » Thu Nov 24, 2016 9:02 pm

Welcome Mymum

I'm very sorry to hear what you are going through. It is incredibly tough. I agree with what has been said about not beating yourself up regarding not getting an earlier diagnosis. This disease is known as the silent killer because it presents with very few early symptoms. It's also an aggressive cancer so can metasize quickly hence why so many are diagnosed at locally advanced stage 3 or stage 4. Only 8% will be eligible for the potentially curative whipple at diagnosis.

I know I felt very tired and not right for around 6 months prior to diagnosis. I put it down to work stress. I had other non specific symptoms but it's only when you put it all together that it makes sense. I could have given an easy explanation to all the symptoms I had. It's like taking part in a quiz when you know the answer it's obvious. Ive kicked myself a number of times about why I didn't get my bloods checked earlier. But I didn't and there's nothing I can do to change that.

There are so many stories regarding different chemotherapy reactions and outcomes. It's very difficult to say how each person will cope. I had 9 sessions of Folfirinox. I was 42 at diagnosis, stage 3 locally advanced and inoperable. I think I tolerated the Folfirinox well but did have a good baseline fitness as used to run marathons etc but as the chemo went on it really got difficult to tolerate. I found it a harsh regime and would be in bed wiped out for 3 days after the chemo before slowly recovering.

I'm now on Gemcap and finding this much easier. I'm glad your mum is hopefully having a stent placed to alleviate the jaundice. Most people feel much better once this has been done.

Wishing you the best
Ruth x

Dandygal76
Posts: 754
Joined: Sat Mar 12, 2016 9:49 am

Re: My Mum - stage IV

Postby Dandygal76 » Fri Nov 25, 2016 9:00 pm

Hey Mymum

That is great they identified what is causing the jaundice and hopefully they have come up with a resolution today to relieve this symptom. I hope your mum feels better soon and returns to her normal colour!

Regarding regrets, we feel the same. Dad was getting more and more tired and other niggle type symptoms. We just put it down to getting older but looking back that was stupid considering how fit he had always been. I remember spring last year seeing him ride his bike through the village whilst I was driving through and a really bad feeling came over me and I could not put my finger on it but in my head I actually said we are going to lose him. It may have just been one of those random thoughts totally unrelated but it spooks me now. Then towards the end of last year he started getting further vague issues culminating in a pain worsening in his back and he had pretty much self diagnosed himself by Sept (well that it was his pancreas - not necessarily PC). Could we get him to get an MRI (I pleaded with him), nope he had to wait on the NHS and trusted they would do right by him. They had already done the usual useless cheaper processes and ultrasound. So then it was wait on the CT, then wait for further diagnostic tests. It was early February before they had all managed to pull their fingers out and state it was now stage IV and this was still after I managed to get him to have a private MRI in the January to gee them along! I think it is one of his biggest regrets.

I regret so much not taking more notice but in all honesty, what was there to really take notice of? I know loads of people with similar symptoms and they all do not have cancer that is for sure. hindsight is such a wonderful thing as they say.

I also look at this now as a double edge sword with dad. I truly believe in my mind that if dad had got that MRI in October then the mets were probably already there in his body. We would have still had the 2 month run in to get to the operation and then months of no chemo and I think we would have been in a worse position.

I think my main answer to you is regrets won't help anything. If you wasn't overly concerned at the time it is because of just that, there was not enough to be overly concerned about. That is what makes this disease the nasty beast it is. x

Mymum68
Posts: 25
Joined: Mon Oct 31, 2016 9:48 am

Re: My Mum - stage IV

Postby Mymum68 » Tue Nov 29, 2016 2:13 pm

They sent mum home over the week-end and we had some nice time together. Yesterday I took her back to hospital and today they successfuly inserted the stent. Mum feels ok and will go home still this week.

I hope the stent will prevent similar occurences in the future and that my mum has still a lot of quality life ahead of her.

I'm really thankful for all the support and guidance - had it not been for you we might not push for immediate medical assistance.
Last edited by Mymum68 on Tue Nov 29, 2016 2:36 pm, edited 1 time in total.

Mymum68
Posts: 25
Joined: Mon Oct 31, 2016 9:48 am

Re: My Mum - stage IV

Postby Mymum68 » Tue Nov 29, 2016 2:20 pm

Hi Ruth,

sorry to hear about your diagnosis, but glad that you respond good to the tratment!

You are of course true - only once you get the diagnosis and you put all the symptomes together, than it makes sense. But they are too vague to prompt immediate action and any easy explanation is always available. When my mum started to wittness the feeling of fullness in her stomach, it was stomach flu season, and my dad was sick with it as well. So naturally she thought, oh, it is just a flu. And in 99% of the cases, that would be true.

I wish you all the best in your fight!
Last edited by Mymum68 on Tue Nov 29, 2016 2:37 pm, edited 1 time in total.

Mymum68
Posts: 25
Joined: Mon Oct 31, 2016 9:48 am

Re: My Mum - stage IV

Postby Mymum68 » Tue Nov 29, 2016 2:33 pm

Hi Dandygal76,

sorry to hear about your dad. And thank you for your kind words.

I also remember thinking - my mum got old "over the night". And she too was in good health and physical condition prior to disease, so it is ridiculous that we put it down to age. But unfortunatelly, so we did. But as you nicley put it: I know loads of people with similar symptoms and they all do not have cancer that is for sure.

Please do not bale yourself for not going for MRI sooner. As you say, the mets were probably there also in October. This was the case of my mum. On CT end of March they did not found any mets, but when they opened here up in first days of May, mets were present and nothing could be done. When I think back it makes sense - mum was rather poor when diagnosed (it all went downhill in two weeks) and I remember thinking - how strange that so little people are diagnosed when disease is limited if there is such pain. But deep down I felt this will not be good - she was way to sick to be stage I or II as it was originally thought. Mets were there, just not seen yet on CT.

So my point it - I do think that once person starts to show signs of disease (like loosing weight, having strong pain etc), it is probably too late for surgery. So don't beat yourself up.

Dandygal76
Posts: 754
Joined: Sat Mar 12, 2016 9:49 am

Re: My Mum - stage IV

Postby Dandygal76 » Wed Nov 30, 2016 11:37 pm

Hey My Mum,

I have just had a nosey on here and saw your response. I am glad your mum has had her treatment and will pop on tomorrow when it is not so late to respond some more. We have the odd days when it gets a bit quiet on here when we have all had enough of cancer talk for a day or two! Much love. x

Dandygal76
Posts: 754
Joined: Sat Mar 12, 2016 9:49 am

Re: My Mum - stage IV

Postby Dandygal76 » Thu Dec 01, 2016 10:02 pm

Mymum

How is your mum doing? My dad was the same... all the scans and things they did in January showed no mets and they were gearing up to give him the operation. They knew he had PC mid December time from their report to the GP. They then saw dad in early Jan and said it was operable. Everything was being pushed this way until he had one last scan (which was a PET this time) and it showed spread to the liver and the bone. Although I hate the aspect of 'we will never know' if the NHS pulled their finger out or dad got the MRI in december that he would have been operable but the non emotional part of my brain thinks that actually it was already there and any operation would have reduced the success of chemo because the whipple would have delayed chemo further. What we are fortunate of is that the measurable mets for dad are tiny to the extent Prof Nano thinks he can get rid of them totally from the liver. Now he has had treatment they are 'negligible' before we even take that step.

Having said all that it is horrible to think if we acted sooner it would have been better. We did pay to get a private MRI in January because I had an argument with him over not spending his money and said to him... 'dad for every person there is a tipping point in this'. I think what Ruth has before is so true.. this should be treated as a clinical emergency. Not only for the treatment of the physical disease but for the mental well being of everyone involved. It is just inefficiency that drives the delays. If everyone seems to be able to be seen within 1 - 2 months then (as for anything in the NHS) why can they not drag all this stuff forwards and keep it there (same for anything on the NHS).

I hope your mum is okay and that you are getting to have some good quality time with her.

Please let us know how you are getting on.

xx

Mymum68
Posts: 25
Joined: Mon Oct 31, 2016 9:48 am

Re: My Mum - stage IV

Postby Mymum68 » Sat Dec 03, 2016 5:52 pm

Hi Dandygal76,

delays in diagnosis and even more in treatment are so hard to accept. For me too. I just don't know how they can not treat pancreatic cancer with sense of urgency. After getting the diagnosis, waiting for surgery almost "killed" us mentally. Waiting for the call to be admitted for surgery... worst weeks so far. You feel abandoned. Than getting the news it was to late and surgery was for nothing... you can't help but thinking, why on earth don't they treat this patients as urgency. We waited 6 weeks for surgery... And they dd not care to repeat not even a CT scan before going for surgery, let alone doing PET scan. Pure negligence. They could at least spare my mum the pain that comes with procedure like this.

I'm glad to hear your dad is doing so god!

My mum came home already one day after stent was inserted, but I'm worried. She has problems with burping and every day in the evening she throws up. She was not throwing up on a regular basis since May. So she avoids eating. Before this jaundice event, she eate normally, I would even say a lot. Now she feels full, has problems with burping and eats very little (and than in the evening she throws it out). I'm so worried. Will talk to her GP on Monday and we have appointment with oncologist on 20th of December.

Did anyone of you/your loved ones experience problems after stent was inserted? She has no pain, but as said, feeling of being full and burps frequently. Situations gets worse in the afternoon. After throwing up she feels "ok" (in her own words). We have a CT scan latter this month, but ultrasound showed basically no important change since diagnosis in March. So they called it "stable" disease. But i don't like, what I see. She is getting weaker :-(

Mymum68
Posts: 25
Joined: Mon Oct 31, 2016 9:48 am

Re: My Mum - stage IV

Postby Mymum68 » Sun Dec 11, 2016 12:38 pm

My mum is dying. According to doctor, who made house call today, she is very near the end. Yesterday the pain increased, we had a terrible night. We could not control the pain, she keept saying she feels like vomitting, but there was nothing left to vomit. Today we received new pain medication, she is now sleeping and seems she is not in pain.

I have just one wish left when it comes to my mum's time on earth: that she would not suffer like she did this night. Please spare us at least this. And please leave her some dignity. We don't ask for too much, do we?

Please keep us in your thoughts and prayers.

Veema
Posts: 503
Joined: Mon Feb 02, 2015 5:35 pm

Re: My Mum - stage IV

Postby Veema » Sun Dec 11, 2016 3:08 pm

Lots of prayers and positive thoughts. There is no need for her to be in pain, that should be kept under control.

Lots of love and strength...it's a tough time and we are thinking of you.

Vx

sandraW
Posts: 1033
Joined: Thu Oct 31, 2013 5:38 pm

Re: My Mum - stage IV

Postby sandraW » Sun Dec 11, 2016 4:21 pm

Sending you a big cyber ((Hug)) its just all so scary, and we feel so helpless, I hope the drs and nurses now have a treatment plan to keep your lovely mum pain free.
It is worth it, if you do have the time, to speak to the nurses on here, they have so much knowledge about this horrendous disease, and they are so lovely. They might be able to give you some help just in case mum does suffer any more pain. Take care, thinking of you all love sandrax xx

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: My Mum - stage IV

Postby Wife&Mum » Sun Dec 11, 2016 5:12 pm

Thinking of you and your dear Mum, and sending my very best wishes for strength and comfort at this ghastly time.

W&M xx

Proud Wife
Posts: 733
Joined: Sun Jan 17, 2016 9:28 am

Re: My Mum - stage IV

Postby Proud Wife » Sun Dec 11, 2016 5:18 pm

My heart goes out to you, it really, really does. I was very lucky, my hubby passed quickly at the end and without suffering. You are absolutely right, if it's your mum's time, then please let her pass peacefully and without any pain. Hopefully the new medication works and if it doesn't, insist on something else. In this day and age, no-one needs to suffer.

You will be in my thoughts and prayers I promise x