A forum for advanced pancreatic cancer issues

Moderator: volmod

Forum rules
Please see the messages in our "Rules" section

The posts on this discussion board are made by members of the General Public and are not intended to constitute medical advice
louisej
Posts: 9
Joined: Sun Jun 12, 2016 3:23 pm

How much time?

Postby louisej » Tue Jun 14, 2016 7:48 pm

I am new to the forum and after nursing my own mother with stage 4 cancer I am aware of the fact that knowledge is quite often power. I am now in a situation where my mother in law (who i care for so much) has just been tole she has stage 4 Pancreatic cancer with no option of an operation due it also being in the liver. I want to support my other half as best i can but feel unequipped to do this as I very little knowledge of this type of cancer.
The first doctor (a surgeon as opposed to an oncologist) has mentioned a time of 8 -12 months but i do wonder if this is optimistic. I would rather know the truth so i can prepare. They have suggested chemo and although I know things have moved on since my dear late mum had it, i cannot help relive the awful experience she had with it and the precious quality time it took from her and us.

How much time does chemo actually give you? She is 71 and has lost about 2.5 stone already..probably due to the jaundice and subsequent itching (hospital stays etc)

Linda G
Posts: 108
Joined: Fri Sep 11, 2015 2:06 pm

Re: How much time?

Postby Linda G » Tue Jun 14, 2016 8:35 pm

Hi Louise, welcome to the forum that nobody really wants to be a part of. I'm so sorry to hear your sad news. You will find a lot of support on the forum and you will also get the truth. It is a difficult time for you and your family. My husband (64yrs old) was diagnosed in June 2015 with the same prognosis. When it was discovered to be in the liver as well he was referred to an oncologist. My husband asked the oncologist outright what was a timescale. He was told 4-6 months without chemo and up to one year with chemo. He had two cycles of chemo which he did not tolerate well. It seems people react very differently to chemo. Some do very well, others not so well. It is a very individual decision for each person affected. After the two rounds of chemo my husband wished he had never had it and had better quality rather than more time. You and your family need to discuss the options with the oncologist and they will assess the situation and advise her as to what they think is best. Of course she will need all of the information before she is able to make a decision. I hope this information helps a little. I'm sure you will get a lot more replies in the next couple of days. Have you got an appointment for the oncologist yet? If not, don't wait too long before you get on the phone to them. Does your mother in law use creon tablets to help with the absorption of nutrition from her diet? If not you need to ask for them because she is not absorbing any calories and this is why she is losing weight. The medical staff on the forum are really very helpful and have so much experience, they will be able to answer any questions you have. Take care. Be strong.
x
Linda G

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

Re: How much time?

Postby Dandygal76 » Tue Jun 14, 2016 9:02 pm

Hey Louise. Sorry you are going through this. Do you know how big the tumour is and the mets to the liver? Do you have access to funds to assist you?

boa
Posts: 129
Joined: Thu Jul 09, 2015 1:13 pm

Re: How much time?

Postby boa » Wed Jun 15, 2016 7:34 am

Louise, I'm so sorry to hear that your mother in law has been diagnosed with pancreatic cancer. If you look at the stories on this forum you will see very different experiences with some people living a long time after diagnosis and others a shorter time. My husband was diagnosed in March 2015 and able to have the Whipple operation from which he recovered well and which seemed to have taken out all the cancer but by late June it was clear that the cancer had either returned or was not fully removed. He had been having gemcitabine as adjuvant chemo which he tolerated well but was put on Folfirinox from August which he tolerated less well. At the very end of November he was told that the tumour was being contained but the next day he was hospitalised and was in and out of hospital until he died on 12 January 2016,

As Linda G says above the decision on what to do is a very personal one. The problem is that no one can really assess how well a chemo regime will suit them and it depends on how aggressive the tumour is.

I'm sure your mother in law is grateful for your support.
Catherine

PCUK Nurse Dianne
Posts: 273
Joined: Tue Aug 14, 2012 3:29 pm

Re: How much time?

Postby PCUK Nurse Dianne » Wed Jun 15, 2016 12:47 pm

Hi Louise,

Welcome to the forum, and I am sorry to hear of your experience so far, and also your mother in law's diagnosis. I am sure as you have already found this is a very supportive place to be and some wonderful 'forum members' who will be there for you in the coming period. I will email you separate to the forum, however please do continue to use the support of others here.

Kind regards,

Dianne
Pancreatic Cancer Specialist Nurse,
Pancreatic Cancer UK
Free phone 0808 801 0707
Email: support@pancreaticcancer.org.uk

Marmalade

Re: How much time?

Postby Marmalade » Wed Jun 15, 2016 5:05 pm

Hi Louise,

So sorry that you are facing this again with your mother in law. My husband has inoperable PC diagnosed in March 2016 and a host of heart problems. He has elected not to have palliative chemo. Our prognosis was 3 to 6 months without chemo and 8 to 10 months with chemo although the oncologist agreed that he was unlikely to tolerate the chemo very well.

There is no accurate answer and nor is it possible to predict who will do well with chemo and who won't. I've spoken to lots of oncologists and they say it is impossible to tell until they start.

I wish you and the family all the best for this journey and welcome you to the forum

Sueoliver
Posts: 519
Joined: Thu May 22, 2014 8:22 pm

Re: How much time?

Postby Sueoliver » Wed Jun 15, 2016 10:29 pm

Hi Louise,
I am so sorry your Mother in Law has been diagnosed. I don't think anyone knows the answer to that question. My mother was told 8-12 months and lived for 21 months. She made it to her granddaughter wedding which she was determined to do. She didn't have chemo for a year before she died. My Mum was always positive and determined.
This disease has many twists and turns and I don't think anyone knows what will happen to each individual person.
This is a great forum and you will find everyone kind and helpful. Please keep posting if you need support.
Take care and look after yourself as well.
Love Sue X

louisej
Posts: 9
Joined: Sun Jun 12, 2016 3:23 pm

Re: How much time?

Postby louisej » Fri Jun 17, 2016 9:55 am

Thanks for your supportive messages and advice.

We are still awaiting the call from {name removed - moderator} so until then no decisions can be made i guess. I remember reading so much on the internet about my own mums cancer (Vaginal) but to be honest its very rare so little info was really helpful. Pancreatic cancer seems to be unrelenting and as there is so much more information out there, its making hard reading. i'm keeping information I have read from my other half as it will tear him up. I cant help but think that the 6-12 month prognosis is generous. I really don't think he can handle seeing her struggle with chemo and would prefer her to live out what time she has enjoying her family.

The areas in the liver are in 3 places as well as the head of the Pancreas. Does this make a difference as to levels of pain and the type of chemo? Do they target both at the same time or concentrate on one then the other?

She is taking the Creon tablets to help with digestion (as you suggested).

I need to know the truth so i can prepare how best to support the rest of the family. My father in law has dementia so we have to take this into consideration and look at the future options for his care which is making things even harder.

My mother in law has become my second mum..... although she will never replace my own dear mother, she has been that anchor in my life that i have missed for 10 years. Its so hard having to go through this again and has brought up a lot of memories and opened up boxes which i had locked shit in my head. I feel i have to stay strong for my other half but inside its tearing me up.

Marmalade

Re: How much time?

Postby Marmalade » Fri Jun 17, 2016 1:41 pm

Hi Louise,

Sorry that you are still waiting. Does your MIL also has Ometprozole or similar as well as the creon, it helps control with stomach acid? Might be worth asking about whether it is appropriate.

In the end the decision about chemo will be up to your MIL and her consultant. Age and condition has a lot to do with it as does the patients desire to fight.

Thinking of you all M x

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

Re: How much time?

Postby sandraW » Fri Jun 17, 2016 10:34 pm

Hi Louise,
Welcome to the forum. The cancer in the pancreas and the liver will be the same, your mum in law has pancreatic cancer in her liver, so the treatment will hopefully attack both sites at the same time.
As for time scales, everyone is so different, and the way the cancer attacks is different too, we were told after my husbands operation that his cancer was very aggressive, and this proved to be the case, but others have done really well with treatment and no surgery.
I am sorry to her you lost your own mum to cancer too, and it obvious that you care deeply for your mum in law, so it must be doubly hard for you as well as worrying about your "other half" too.
Please let us know how she is doing and remember we are always here to listen, when you need us to,
take care sandrax xx

louisej
Posts: 9
Joined: Sun Jun 12, 2016 3:23 pm

Re: How much time?

Postby louisej » Mon Jun 20, 2016 9:57 am

We have an appointment with Dr {name removed - moderator} at {name removed - moderator} a week tomorrow. I called them to see if they could update us and the next day the appointment came through. It seems that no one in the family is talking about it at the moment and I understand this as until they are face to face with the oncologist there perhaps is no need. We have no understanding though of where my mother in laws head is at in terms of whether she wishes to progress with chemo yet. I suppose this decision can only be made once the meeting takes place.

I am concerned as she is starting to get pain in her right side and am wondering if this is a result of the liver enlarging. No other medications have been prescribed apart from Tramadol.

My partner is really struggling and I feel he has gone into himself which is concerning. He wont talk at the moment and is very low. The reason i suppose it is worrying me is that both my brother and I had very bad relationship break ups following our mums passing from Cancer 10 years ago. I've seen how tough this journey can be on otherwise solid relationships and I am scared. We have 2 young boys (3 and 1) and want to protect them from any upset and outpourings of emotions as i don't think the 3 year old will handle it very well as he is very sensitive. He loves his grandma so much and i think this is what is breaking my partners heart.

L x

Didge
Posts: 825
Joined: Sun Dec 29, 2013 10:35 am

Re: How much time?

Postby Didge » Mon Jun 20, 2016 1:08 pm

Hi Louise, sorry you are going through so many worries at an already difficult time. You might like to look at the Winston's Wish website. Although primarily a bereavement service for children they also have a section called Dealing with serious illness' which has lots of helpful information. Sometimes it is helpful if you feel you are doing something even if just focusing on your worries about the children. It can allay the feeling of helplessness! The time question is impossible to answer as others have said. I don't know if you saw the programme on people living with cancer? I think programme 2 (Last week?) featured a lady with pancreatic cancer who chose not to have treatment and did quite well. Of course all cases are different but worth watching for anyone whose loved one has chosen not to have treatment or perhaps advised not to have any x

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

Re: How much time?

Postby Dandygal76 » Tue Jun 21, 2016 12:10 am

Hi Louise. We all totally understand how hard it is to support your family through this awful time. The diagnosis of cancer is such a shock in itself and then when you get on google and read about pancreatic cancer it is more than devastating. Those initial raw emotions will settle as I am sure you know after going through this with your mum. What I would say to you is that if mum in law decides she wants to have chemo then I would advise a couple of things on a practical level to save you research of options. Sorry if this is too much at this time but there is only a small window for some options - and some may work but for others not so well so I can only give you options I found available without any recommendations because it will depend on what mum in law wants (if anything) and different things suit different people.

Firstly, you may want to look at trials available before any chemo on the NHS because a lot of trials can exclude you once you have already chemo (not all but some options will close). There are a list of trials on PCUK website. A trial (depending on where you live) may be the only chance for her to get Abraxine that is not available on the NHS in England but can be an effective treatment alongside the trial drug hopefully. It is worth a look and there are not many trials to compare to but may give a few more choices to you.

Secondly, you may want to look into Nanoknife which is a technique at a hospital in London. If you look on the PCUK website they tell you the only place you can get it privately at around £13000 for pancreas and £8k for liver. If the tumour is not too big and the Liver mets not too big then he will treat stage IV and some people have had good results with this. This could not be done alongside a trial but can be done alongside NHS chemo.

Thirdly, go with the NHS and if she is strong enough she may have the choice of Forfirinox but if not then there are other options available.

These are very personal choices, as is a decision not to have any treatment.

It is so hard with the grandchildren in the picture as well. I look at my dad watch his grandchildren and it saddens me that they may have to go through losing him in such a terrible way and that he may not see them thrive. He thought he would really enjoy his 60's. We understand the pain that your family is going through and you will find this forum a great source of support. x

louisej
Posts: 9
Joined: Sun Jun 12, 2016 3:23 pm

Re: How much time?

Postby louisej » Tue Jun 21, 2016 2:05 pm

dandygal176 such great and simply put advice. Being new to the PC treatments I am not very converse with all the terminology. I will certainly look at these three options.

Her doctor called this morning which has perked her up as he said 'there is so much they can do nowadays.' I know he is trying to be positive bless him but worried he is giving her false hope. She has not wished to know the time scale ... only my partner and his sister were in the room when the 6 -12 months was discussed. I have a concern that next Tuesdays meeting at (name removed-moderator) will reveal this prognosis and throw her for six.

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

Re: How much time?

Postby Dandygal76 » Tue Jun 21, 2016 2:43 pm

I am hopeful that we have extended my dad's life by far more than the 6 months we were given on Feb 5th. The professor that does the nanoknife in London says that there is more hope now and not to give up too soon. My aim is to just try and keep dad going to see what new treatments are around in 2 years rather than look into the abyss beyond that. Now we just keep fighting one day at the time. The biggest risk to my dad is either infection taking him (Prof Nanoknife stated this) or that he just cannot tolerate the side effects of chemo and he jacks it in (He is very poorly with it). The risk of the actual cancer taking over right now is 3rd on our list! There is hope... there is always hope... just take a bit time to look around at what is out there. x