End stage and Ascites

[rosie050_0]

I am new to this forum and have been reading through some of the posts, that have touched me deeply.

I would like to share my story..... My husband was diagnosed with PC in July 2010 at the age of 33. I personally have not come across anyone yet who has had this cancer so young?

He had the whipple procedure in August 2010, followed by 6 months chemotherapy. He was diagnosed in July of this year with mets to the abdominal cavity wall, lymph nodes and bowel and given a couple of months to live. He is still with us, doing what he does best and fighting this awful cancer. He is currently undergoing Folfirinox chemotherapy and has already had 8 courses. The cancer has not spread further.

He was admitted to hospital on christmas eve and is still there. He has Ascites and has had 8 litres drained so far. Our children and I are hoping that he will be home with us in the next couple of days.

I have read that Ascites is something that occurs at the end stage...... But it seems to vary what I have read, some say a few days, to a month, or two. I'd really know what to expect, and what the future holds........

Thank you x

[louiepc]

Hi rosie, I am so sorry and sad to hear of your husband having this terrible disease at such a young age. There are a few people on here, lynbo, for one, who lost her husband at a young age.

My mum has ascites, she developed it in August, she had it drained, it does come back, and I must admit since Aug, she prob had it drained about 5 times. I expect everyone is different my mums cancer had spread to her stomach, and this was probably why she had to be drained so frequently.

Good luck andbest wishes to you and your family i hope and pray that you get a long time together.

Louie xxx

[rosie050_0]

Thank you Louie for your reply and kind wishes.

I guess because he has mets in the abdominal cavity wall, it is more than likely that he will have this drained quite a few times then.

I'm so sorry to hear about your mum.

I wish I had seen this website sooner, it would have been of some help to me over the last 18 months! At least I have found it now.....

Thank you Louie

Rosie xxx

[rachelqt]

Hi Rosie,

Im very sorry to hear about your Husband, I think its truly awful for anybody suffering from this disease but for somebody at a young age it is heartbreaking. I cant even imagine what you must be going through especially when you have your little ones to care for.

I hope the Chemo continues to keep his cancer from spreading any further and give you both more time with each other.

This forum has been a fantastic support to me since my dad was diagnosed in September. If you ever need a shoulder to cry on, there is a lot of us on here who will be here for you.

I hope your Husband gets home soon and look after yourself..

Rachel x

[PCUK Nurse Jeni]

Hi Rosie,

So very sorry to hear what your husband is going through.

I think Louie is right in saying that everyone is different, and therefore, it is difficult to give a time figure on exact times etc...But, you are correct in your acknowledgement that it does signify that the disease is causing other symptoms within the body. Again, once this begins to happen, it is an ongoing process, and fluid can re-accumulate at various times during the time remaining. It may be that the chemo has helped to prevent this so far, or even slow it down a bit, so, very possibly, if he were not on chemo, it may have reached a critical level already.

I think watching out for it re-accumulating again, be aware of distended abdomen, which can look very tight; abdominal discomfort or pain; pain in lying on a particular side, and shortness of breath. You will be able to let the doctors know that it has happened before, so hopefully, arranging to have it drained will be less of an issue.

Hope this helps?

Jeni.

[lynbo]

Hi Rosie

I lost my husband age 39, and although we had no children i kind of know what you are going through?

Another lady on here - Debbie, lost her beautiful daughter age 27.

Your husband sounds like he has had good treatment so far though, a lot more advanced than with mine, so keep fighting, read Nicki and Ted's story, they are fighting on no matter what PC throws at them.

and..... were all on here to help one another, so dont be a stranger

Keep Strong xxxxxxxxxxxxxxxxxxxx

Lynbo

[rosie050_0]

Thank you Rachel, Jeni and Lynbo for taking the time out to reply to my post. Sorry for not replying sooner, we have had a busy few days.

My husband came out of hospital on Friday after having 10 litres drained from him in the end. He has been doing very well considering the circumstances. He managed to spend some time with us on New years eve, evening. We held a NYE charity auction event on Saturday to raise money for PC UK. So far we have raised £2,800. I am so pleased to be able to help in a little way towards this. I feel so helpless sometimes, now I feel like I'm doing something! Including the half marathon in April.......

Jeni thank you for the information. I have also been in contact with our local hospice, and the nurse will be attending every two weeks now to keep an eye on things. My husband has a habit of doing things himself with little help from everyone else! Although he is still with us 18 months later, so must be doing something right! We have had such terrible treatment along the way, with misdiagnosis and other things...... which is a whole new story!

Lynbo, it is also so sad that your husband was so young. I'm so sorry to read your story.

I really don't understand why it happened to my husband as he doesn't smoke, rarely drinks and was an avid gym goer........... It just did. I guess one thing that has probably helped him is that he was so fit to start with. There has been a few occasions in the last year and a half that I thought that the end was near, last week being one of them, but he bounces back..... truly amazing!

Our children are amazing too and have coped remarkably well. One is 14 the other 4. There have been a few issues with the 4 year old, but on the whole he has coped very well.

I will definitely keep in touch with you guys on here, as I'm finding that it does help with all the emotions going on.

It is a very sad story indeed that there are so many people in the same boat......wish I had a magic wand!

Lots of love and wishes to you all xxxxx

[lynbo]

Hi Rosie

Well it sounds like your husband is doing well, and you have raised money for PCUK too, excellent!

It's all you can do, battle on, my Andy never smoked either, drank occasionally and was a keen footballer and runner, our local football club have donated loads for my charity work, and have featured Andy in the footy programme.

Keep us updated on how things are going!

Upwards and onwards!

Xxxx

[rosie050_0]

Hey Lynbo.....

That is fantastic that the football club have added Andy to their programme. It must make you very proud!

I know that there is no rhyme or reason for it, and obviously the same situation with your Andy...... fit and healthy. Sometimes I don't get it.

Thats absolutely brilliant you are doing loads of charity work! We can conquer the world at this rate!.... Well a little at least

Like you say battle on...... I'll keep you all updated.

Lots of love xxxx

[deb68]

Hello Rosie

I have read your story with much sadness and my heart goes out to you and your family. I lost my beautiful daughter Gemma to pancreatic cancer at the age of only 27 and since then have only come across one other person the same age. There are really no words when someone is diagnosed so young and I can well understand the journey you are on.

It does sound as though you have good support from the hospice and the advice and support from Jeni at PCUK and from others on this forum is invaluable.

With regard to the ascites, my daughter had to have hers drained a number of times and although it was not a pleasant procedure it certainly brought some relief to her once it was done.

Sending lots of love and strength to you all

Debbie.xx

[rosie050_0]

Hi Debbie

Thank you so much for taking the time to post on my board.

I am very sorry to hear that you lost your daughter Gemma, at a very young age. Like you, I haven't really come across anyone of this age group. There really isn't enough awareness about this type of cancer, with a lot of unnecessary misdiagnosis..........

Thank you so much for your wishes. I will certainly keep you all update on the progress of my husband.

Lots of love xxxx

[rosie050_0]

Hi.....

Just a quick question for anyone that can help regarding Ascites again. 

My husband only had the 10 litres drained from him a few days ago. I've noticed his stomach has swollen again, definitely Ascites. 

Is this quite common for it to accumulate so quickly in a few days? 

Many thanks

Xxxxx

[PCUK Nurse Jeni]

Hi Rosie,

It is not that common for the fluid to build up again so quickly after draining. Usually, it is a couple of weeks or maybe more, depends. Especially after he had so much drained, then this is a worry. Is it possible that it is bloating from wind? This can cause the swollen abdomen.

Either way, if you can get hold of your GP, he should be able to tell by doing an abdominal examination, and listening to it to see if there is fluid building up again. Failing that, try the chemo unit, or the ward where he has just been, and let them know what you can see going on with his abdomen. They should be able to advise you. It may be that there is a small amount there, which might not need draining just yet?

Hope you get an answer.

Jeni.

[rosie050_0]

Hi Jeni

Thank you for your reply. I called the hospice this morning and they asked me to bring him in, which I did. The consultant did an ultrasound which confirmed the fluid build up again. He's had another drain fitted today and already drained 4 and a half litres from him. The drain will stay in until tomorrow I think. Obviously I'll know more tomorrow when I visit him again.

This is such a large amount?..... 14 litres so far in 6 days? The consultant mentioned having a permanent drain fitted, I'll ask more about that tomorrow.

From your personal experience, I know that's this obviously is not a good sign, but am wondering how much time this is likely to give us?

Many thanks

Xxxx

[JST]

Hi

I haven't posted much either, but your question about 'how long' and 'end stage' stikes a chord with me, as I never really felt I got straight answers from the medical team looking after my husband. My husband developed ascites and went into hospital in between Christmas and the New Year to have it drained. They drained off a similar amount, about 8 to 9 litres. He came out on the Friday and we had a fantastic New Year with friends, it was all so 'normal'. Really lovely. Whilst my husband didn't have any spread of disease to other organs, there was a lot of disease within the surrounding area and around the portal vein. My news isn't good I'm afraid, as he was discharged from hosptial having been told that we probably had weeks - maybe as long as 10-12 weeks but in the event he went downhill rapidy from Monday night, the 2nd January and died on Thursday evening. I think we knew things were not heading in the right direction on Wednesday, but even the medical staff at the hospice did not expect things to happen as quickly as they did. Having said that, I have recently spoken to one of the nurses on the chemo ward, who was not surprised by how quickly things happened. I know that not everyone wants to have all the information about end of life/or how long - but for those of us left behind (and I too have two boys to look after), preparing them for what lies ahead was important to me, to us. Fortunately, we spoke to our boys on New Year's Eve, telling them that there was no further treatment and that we were not going to have as long as we might have hoped. We had just 5 days after that conversation. My husband was diagnosed in August '09. He was 50.

[Drew]

I have never heard of ascites but I have noticed Heathers stomach swollen over the last day or so. I have asked her did she think it was , but she said no.

I don't want to worry her about it but it us bigger than normal.

She is due at cancer centre on Monday for bloods and possible transfusion so I'll mention about it then.

Drew

[laura]

hello jst, so very sorry to read your post, what an awful rollercoaster for you all over christmas and new year, am so pleased for you that you had a lovely new year, what can i say, but am thinking of you and your children at this sad time. there seems so much sad news on here at the moment [my love to all of you who post on this site] im in the middle of a bout of fibromyalgia and was feeling sorry for myself, this gives one a reality check, doesnt it?

take care of yourself jst and rest when you can, love laura xxx

[PCUK Nurse Jeni]

Dear JST,

So very sorry to hear about the death of your husband.

It was very quick, as it often is with this cruel cancer.

Please accept our sympathies at this difficult time.

Jeni.

[rosie050_0]

Hi JST

Thank you for your reply. I wish I had read that sooner, as have only just come on now.

My husband passed away on January 27th 2012, around a month after the ascites was first drained. He died aged 34.

Such a terrible disease. He fought to the end and never once gave up! That was him all over!

I will do my upmost to fund raise for this cause to help other families in the future.

My thoughts go out to you all.

xxx

[PCUK Nurse Jeni]

Hi Rosie,

So very sorry to hear about the death of your husband.

Please be assured that you can continue to post on here for as long as you like.

We offer our sympathies to you and your family during this difficult time. There are a few similar stories on here at the moment, so it is a sad time for many of the users of this forum.

Kind regards,

Jeni.

[louiepc]

Dear rosie and jst

I am so very sorry to hear of your husbands deaths. such a. sad time. My thoughts, prayers and love are with you both. X louie x

[rosie050_0]

Thank you Jeni and Louie xxxx

[rachelqt]

Dear Rosie and JST

I am so very sorry to hear about your Husbands. My thoughts and prayers are with you and your family...Rachel xx

[rosie050_0]

Thank you Rachel xxx

[AnthonysDaughter]

My heart goes out to you, your story has similarities with my dad, he passed away on Jan 24th 2012 about a month after having his stomach drained of 7.5 litres, he came home on Christmas eve. His funneral was last tuesday, the 7th Feb. Such a sad time for lots of people at the minute. The start of one of the poems the vicar read was 'we can cry because he has gone. Or we can rejoice that he has lived..' I really think it has had a profound effect on me, it gives me some comfort. Love to all xxx