My Mum - stage IV

[Mymum68]

Hi all,

I'm new to the site, that no one would ever want to join.

My mum was diagnosed with pancreatic cancer end March 2016. CT did not show any disease progression, so surgery was scheduled. Unfortunatelly during the surgery mets were discovered and surgery was stopped.

As of end May she has been first on Gemcetabin alone, and as of end July abraxane was added. I should add that we do not live in UK (I saw some posts about insurance issues with abraxane in UK). Here oncologist believed that Folfirinox would be too toxic for my mum (68 at time of diagnosis, just turned 69). For the piece I would be happy to try out Folfirinox, as the only remission posts I have encountered in stage IV patients were of those on Folfirinox. But as said our doctor was not in favour and my mum was affraid that it would be too much for her to cope.

Her schedule is 3 weeks on, 1 week off, but due to low blood counts, she usually gets it every second week. She did not have any bigger issues until last session, when on day 4 she she vomited 5 times and her skin and eyes turned yellow. I have cancelled appointment for this week and we will see how she will recover.

The yellow skin and eyes freaks me out, did anyone experience it after the session? I'm affraid it is disease progression

Also would love to hear from anyone who is on gemcitabin + abraxane combo.

[Guest]

Hi Mymum68,

I am very sorry that your Mum has been diagnosed with this awful disease but you will find lots of people on here who will give you information and support if you need it and you can message the nurses who are really great.

I can't comment on the chemo drugs except to say that the decision must be with your Mum and her doctors. It's incredibly hard for those of us who care for our patients to stand by helpless and it is quite normal to hit the internet for help, reassurance and information, to seek more and other opinions and to try and understand what we can do to help those we care for. Sometimes we can suggest things to the medical staff and or in your case, your Mum. The big issues when commenting is that others do not have your Mums medical records or in most cases any medical training so they can only talk about their individual case. It sounds like your Mum has some other health issues which would make more a more aggressive palliative approach hard for her. It was also the case with my husband who was older and chose not to have chemo at all.

I am sure that in the next hours others who have been through this and been part of the decision making process will come on and comment on your specific question but in the meantime please know that you are now part of a very loving and supportive forum where you can share your story with confidence with those who understand what you are all going through.

Best wishes, Marmalade xx

[Mymum68]

Hi Marmalade,

thank you for sharing your thoughts. I'm sorry about your husband and that you had to go through this ordeal.

It is dispair talking out of me - I of course have no idea if folfirinox would made any difference. My mum did not have any othe medical issues - she was really healthy and strong till this devil hit us. She lost considerable weight before starting chemo and looked fragile, perhaps that was the reason for choosing less agressive treatment.

I just hoep that I can survive what is ahead without going nuts! I'm really close to my mother - i'm the only child and I do not have family of my own. Disease hit us by total surprise and shortly after my mum was diagnosed with pancreatic cancer my father was diagnosed with prostate cancer (hopefully he has some more time). We went from happy family to dispair in such short time, that I still struggle to accept the reality.

I just hope to be able to support her (and my father) as they have supported me. But is hurts beyond word.

[Dandygal76]

Hey Mymum68

I have not heard of Abraxane causing jaundice directly and cannot help with this (it doesn't mean it is not the chemo, just I have not heard of it). I have though seen very good results with Abraxane as well as Folfirinox, albeit keep this in context that only the really lucky ones get really good results. I think with PC it is mainly NED that is considered a good result still with both chemo types.

I think it is important your mum sees the doctor about the jaundice asap because this can make them very ill and weak if it is not sorted out and it can take a long time to recover from. Your mum may need a stent or something to help. If it was me, I would not wait for the next oncology appointment to deal with this.

I think that for all oncologists I have seen they will only give Folfirinox to those who are pretty fit, it is a brutal routine and can do more damage than good. Having said that, some people do not seem to suffer side effects so much and I would be the same as you in wanting to try it for your mum.

Marmalade is right though, all we can give is our experiences and what we are doing and know. Every case is different and it certainly is the patients choice first and foremost. We can only give them the options.

It is horrible, the whole thing is a nightmare but it is a path we must all tread now and we are here if you want to discuss anything around it all. Stay strong lovely.

DG x

[Mymum68]

Hi,

I'm trying to convince my mum that she has to go to GP like now. I still have some work to do around that... Hospital where mum receives chemo is two hour drive away, so we would first go to GP and/or if needed to local hospital.

Sorry if my initial post was "strange" - I do know everyone is different, that abraxane is a good treatment as well, etc. I'm just so sad and many things go through my mind in the last days.

The biggest regret is late diagnosis - my mum did look sick for quite a while before going to GP, but none of us thought about cancer. I keep going to last siy months prior to diagnose, when she had many simptoms, but we did not act. I know there is nothing that can be done about it. Just one of those days, ehen my head is full.

[Veema]

I wouldn't have thought the chemo itself would cause jaundice, but I may be wrong. My husband was severely jaundiced just after diagnosis and it was his bile duct that was blocked by the tumour...at that time he didn't have any spread, so maybe her tumour is pressing on the bile duct and it needs stenting...you don't say where her mets are...are they in her liver?

My husband had folforinox and he was fine with it, few side effects, but he was a fit and otherwise healthy 52 year old when diagnosed...having said that, our oncologist said that she had given it to a 74 year old woman who had also tolerated it well. The folforinox stopped working for my husband and he was due to start gemcitibine but he became poorly and died.

Vx

[Mymum68]

Hi Veema,

yes, mets are in her liver. I too am affraid that her jaundice is not caused by the chemo. We'll see. For sure we need to have spme tests done.

I'm sorry to hear about your husband. Surviving this cancer looks equally rare as winning the lotto...

[Justamo]

Hello MM68

So sorry about your mum. I didn't sleep very well last night and noticed your post just after you made it.

My husband starts his chemo today. He's 84 and we're hoping that it'll give him more quality time - he seems quite well at the moment and is cheerful about having a Plan.

Don't have regrets about late diagnosis. The only sign that Peter was unwell was tiredness, and I didn't pay much attention to that and neither did his GP. It was only when he had some pain stretching into his chest that he started having tests and PC was suspected. You'll see lots of posts about people being diagnosed for the first time as stage 4. That's how it is and that's why it can have such a poor outcome. No point in beating yourself up because of a late diagnosis - that's normal with PC.

Take care of yourself too my dear, we're all thinking of you.

Love Mo

[Mymum68]

Hi Mo,

thank you very much for your comforting words - I really needed them

I would like to tell you that my mum had really good quality of life in the past months (since on chemo). Sometimes you questioned how come she is stage IV and doing so great. So I do hope that chemo will give your husband additional (quality) time as well. What kind of chemo will he be on?

I know that most patients are diagnosed in stage IV, but it still hurts. Looking back my mum did show something was way off, but unfortunatelly it did not cross our mind that it could be cancer. I try not to beat myself to hard, but accepting that symptoms were there and we did nothing can be brutal on some days. My mum is though very peaceful and has no regrets. She is increadibly strong mentally!

I wish all the best to you and your husband!

[Proud Wife]

Hello MM 68

I am so sorry to hear of your mums diagnosis. The first thing I have to echo is that hindsight is a wonderful thing. I'm 99% sure that your mum was probably stage 4 before there were any tell tale signs so DO NOT beat yourself up. It is of course only natural that you ask "what if" but you've just got to tell yourself it is what it is.

Firstly I do hope that you seek urgent advice regarding what seems to be jaundice, the symptoms can be relieved and that should hopefully make your mum feel better.

With regard to chemo, it is a very personal thing. What works for one may not work for someone else. My husband breezed through 12 cycles of folfirinox. He was then told to have a chemotherapy break which allowed disease to progress rapidly. He then had one cycle of gemcitibane and abraxane which just about finished him off. He was never the same after that and passed about 6 weeks later.

It's a very difficult one to advise on but I was told that if the first line chemo stops working a 2nd or 3rd line treatment for PC willl only add "long weeks " or short

[Proud Wife]

Proud Wife wrote:

> Hello MM 68

>

> I am so sorry to hear of your mums diagnosis. The first thing I have to

> echo is that hindsight is a wonderful thing. I'm 99% sure that your mum was

> probably stage 4 before there were any tell tale signs so DO NOT beat

> yourself up. It is of course only natural that you ask "what if"

> but you've just got to tell yourself it is what it is.

>

> Firstly I do hope that you seek urgent advice regarding what seems to be

> jaundice, the symptoms can be relieved and that should hopefully make your

> mum feel better.

>

> With regard to chemo, it is a very personal thing. What works for one may

> not work for someone else. My husband breezed through 12 cycles of

> folfirinox. He was then told to have a chemotherapy break which allowed

> disease to progress rapidly. He then had one cycle of gemcitibane and

> abraxane which just about finished him off. He was never the same after

> that and passed about 6 weeks later. He was 64 years young.

>

> It's a very difficult one to advise on because everyone is so different but I was told that if the first

> line chemo stops working a 2nd or 3rd line treatment for PC would only add "long weeks" or "short months" to my husbands life and that was sadly true.

It might be an idea to ask your mums performance status. I can't remember if folfirinox is given to someone who is a 0-1 or 1-2 on the scale but I'm sure our nurses may be able to advise further.

Good luck, there will always be someone here to support you and knows only too well what you are going through xx

[Mymum68]

Hi Proud Wife,

thank you for kind words. I read the story of your husband and I'am sorry that this devil hit your family too, but rest assure, your husband was very lucky man to have a wife like you.

I will see my mum back on Friday and in case she is showing signes of jaundice I will take her to GP. She denies that she is yellow now, but than she would say anything for me not to worry.

I stay with my parents from Friday afternoon till Monday evening, than I come with my mum to the city where she on Tuesdays has chemo. I tan take her home and go back to the city, as I work there (it is two hours drive from my parents home). My employer granted me the possibility to work from home on Mondays, so that makes quite a difference.

My mum was ranked as status 1, before staring chemo. I of course don't know if Folfirinox would be better for her, in fact I don't know if anything makes a significant difference once you are stage IV. Of course, there are lucky exceptions and hope is so important.

Right now I'm absolutely not thinking of going to Folfirinox. Last chemo was brutal on her. It took a lot of strenght from her. I'm more thinking if we would not do more harm than good by pursing chemo. One more reaction like this one and she might nit recover. Her oncologist said we would have a break after this round, so I don't think it would make big differrnce if we skip remaining three chemos out. This is now my main preocupation - not to harm her. I don't want to impose my opinion on my mother. So I think we will first go to her GP in case she shows any sign of jaundice. In this case I believe chemo is off in each case. If she does not show signs of jaundice, I will simply ask her what she wants - to continue or not. If we continue and she has one more reaction like this, we finish (for sure for good). But it would be such a pitty that chemo would do more harm than good. Till now she did very good, her markers droped significantly. Than after a shirt break first chemo was so brutal on her. I for sure did not see that comming!

In addition to that my father was recently diagnosed with prostate cancer. So he needs my support too. It looks no mets in his case, he is on hormone tablets. Since my mum's diagnosis he is rather depressed and I'm worried how ge will live without her. She took care of everything and if I can say, she turned house into home. Very happy home that is! I do hope she will be able to enjoy one more Christmas (in good shape).

[Guest]

Hi mymum68'

My heart goes out to you. It's a terrible time for the family. We have a wonderful daughter like you and it is such a comfort. It will take a while to get used to the diagnosis and no, there is not currently a cure but your Mum does not have to suffer. I suggest you speak to her GP and tell the doctor about your concerns. You might also like to speak to your local hospice. They have lots of practice at speaking to patients like your Mum about her options. My husband wasn't keen either but they really can help with speaking to your parents, working with the GP and might support you in getting this jaundice issue sorted.

Your poor Dad, it must feel like the world is caving in. The news is much more positive for him but still a worry. A huge number of people die with prostate cancer but not of it. I have a brother with it. He's had it for 16 years and is still very well and only just starting some radiotherapy. I am not making light of it but there is a lot that can be done for him, he can also have some help with his depression but first you need to have them in listening mode and you may need a specialist nurse or the hospice to help with that.

Much love M xx

[Mymum68]

Just a quick update: I spoke to my mum's GP today, she went in for lab test and was sent to local hospital. Don't know much at this point in time, as we are still waiting for test results.

Thank you everyone for your kind support!

[Mymum68]

Update: it looks my mum has bile duct obstruction. They are keeping her in the hospital and we expect that they will make the decision tomorrow.

[Proud Wife]

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]

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]

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]

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]

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.

Edited November 29, 2016 by Mymum68

[Mymum68]

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!

Edited November 29, 2016 by Mymum68

[Mymum68]

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]

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]

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 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]

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