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

My Mum - stage IV

Postby Mymum68 » Tue Nov 22, 2016 5:29 pm

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.

Marmalade

Re: My Mum - stage IV

Postby Marmalade » Tue Nov 22, 2016 5:55 pm

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

Re: My Mum - stage IV

Postby Mymum68 » Tue Nov 22, 2016 6:07 pm

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
Posts: 746
Joined: Sat Mar 12, 2016 9:49 am

Re: My Mum - stage IV

Postby Dandygal76 » Tue Nov 22, 2016 6:25 pm

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

Re: My Mum - stage IV

Postby Mymum68 » Tue Nov 22, 2016 7:16 pm

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
Posts: 498
Joined: Mon Feb 02, 2015 5:35 pm

Re: My Mum - stage IV

Postby Veema » Tue Nov 22, 2016 10:12 pm

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

Re: My Mum - stage IV

Postby Mymum68 » Wed Nov 23, 2016 5:15 am

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
Posts: 465
Joined: Sun Sep 04, 2016 10:38 pm

Re: My Mum - stage IV

Postby Justamo » Wed Nov 23, 2016 9:07 am

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

Re: My Mum - stage IV

Postby Mymum68 » Wed Nov 23, 2016 10:46 am

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
Posts: 729
Joined: Sun Jan 17, 2016 9:28 am

Re: My Mum - stage IV

Postby Proud Wife » Wed Nov 23, 2016 11:20 am

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
Posts: 729
Joined: Sun Jan 17, 2016 9:28 am

Re: My Mum - stage IV

Postby Proud Wife » Wed Nov 23, 2016 11:34 am

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

Re: My Mum - stage IV

Postby Mymum68 » Wed Nov 23, 2016 5:25 pm

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).

Marmalade

Re: My Mum - stage IV

Postby Marmalade » Wed Nov 23, 2016 8:51 pm

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

Re: My Mum - stage IV

Postby Mymum68 » Thu Nov 24, 2016 4:30 pm

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

Re: My Mum - stage IV

Postby Mymum68 » Thu Nov 24, 2016 5:17 pm

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.