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Judith16
Posts: 25
Joined: Sat Dec 19, 2015 7:09 pm

Re: Totally in awe of my wonderful Husband!

Postby Judith16 » Sun Jan 24, 2016 7:06 pm

My husband was diagnosed with stage 4 PC, 2 weeks before Christmas. 2 weeks prior to that we had been told that it was cancer, it was not until the biopsies we were told it was terminal. Our lives have been turned upside down by the news, my husband is on overdrive trying to sort out everything to make life easier for me when he is not longer with us. My husband has only had two cocktails of abraxane / gemcitabine. He then got a chest infection which has left him low. More blood tests tomorrow and seeing consultant on Tuesday evening. Hopefully Chemo will restart next Thursday. Creon has been helping up until this weekend, when lets just say the world is falling out of his bottom!! He feels he has gone back to before his diagnosis and is extremely worried as is I. We have 3 children and 2 grandchildren (grandkids are just 4 and 4 months). My husband was planning to retire around in a few years, so we could have some quality time. this was due to my nagging as my dad passed away at 64!! My mum never forgave my dad for leaving her before they had any retirement together. My husband is 53 and I have promised him that I will not be bitter. The ups and downs the roller coaster of not knowing is just driving me potty. One day at a time is my new mantra

Fifi

Re: Totally in awe of my wonderful Husband!

Postby Fifi » Sun Jan 24, 2016 7:43 pm

Hi Proud Wife,

They thought it was sciatica, as he suffered with it before. He was bending down to pick up his shopping out a taxi, and he felt them snap. He still made himself a roast dinner every day, and he still hugged me goodbye everytime he saw me. He was so brave. Passed away only 63, it's no age.

How is your husband? What are his symptoms at the moment? Does he get on with creon ok?

Leila xx

Proud Wife
Posts: 740
Joined: Sun Jan 17, 2016 9:28 am

Re: Totally in awe of my wonderful Husband!

Postby Proud Wife » Sun Jan 24, 2016 8:21 pm

Hi Leila

Hope you are having a good weekend. I've spent some time reading up on some stories over the weekend and am totally shocked at how some people either pass too young or have no quality of life after diagnosis, just like your dad. Also reading some of the battles, like Sue's mum - what a brave, strong lady she must have been to fight so hard.

Your Dad sounds as though he was incredibly brave. Wanting to and being able to make a roast dinner every day is amazing. Its so lovely that you have an affectionate dad, why wouldn't he have wanted to hug you - everyone needs a hug! My hubby, son and I tell each other we love each other every day. Was it the cancer that made his bones break? Sounds truly horrific.

My hubby is fine thank you very much for asking. He's actually better now then when he was working, I suppose early retirement suits him, rather than the stresses and strains of his job. If you saw him, you'd never know he was ill. I'm not sure if we are allowed to post details of medication on here so I won't name names but at one stage, he was so thin, the skin was hanging off him. We went to see his pain management specialist about 6 months ago now, who gave me excellent advice regarding anti sickness tablets and steroids and we've not looked back since. Those have given my husband his appetite back and he now eats more than me which is saying something! He has no need for creons. That's just it, he knows and I know what's going on but to the outside world, you'd never guess, other than perhaps a swollen face which is either due to the steroids or 4 stone weight gain! We've actually been told to cut down now on the steroids to avoid muscle wastage - we just wait and see now what the next 6 weeks have to bring, see what his bloods test results are and take it from there.

He always said when my dad died from cancer that if it happened to him, he'd never have chemotherapy or treatment but that changed on diagnosis because he says he's not ready to leave us yet so I'm really, so very proud of him that 10 months later, despite advanced stage 4, he's doing so well. I only hope and pray it carries on that way. With his positive attitude, I'm sure it will!

lots of love xx
Last edited by Proud Wife on Sun Jan 24, 2016 8:40 pm, edited 1 time in total.

Proud Wife
Posts: 740
Joined: Sun Jan 17, 2016 9:28 am

Re: Totally in awe of my wonderful Husband!

Postby Proud Wife » Sun Jan 24, 2016 8:35 pm

Hello Judith

Thank you so much for posting here. I know it took me a while to pluck up the courage - I was scared to post in case I tempted fate because it's so far so good with us after a rocky few months.

I'm so very sorry to hear about your husband, he's far too young too. I think it must be very hard not to be bitter but of course, he doesn't need to know that. I totally relate to you about the not knowing. I spent the first few months worrying about when it was going to happen, how it was going to happen and how I would cope without him but now realise I need to be enjoying every single day with him. Worrying about the future won't change things and I know I shouldn't spoil the time that we do have left today but sometimes that's easier said than done. I'm sure my son will fly the nest in the next few years and I don't relish growing old on my own. Like your story, we've not got to retirement age either so it's only natural that you feel cheated.

Had your husband been ill for long before diagnosis? I sincerely hope that once chemo restarts your husband will start to feel a little better, I would say it took a good 3-4 months for my husband to be on the up. When he was first diagnosed and I started to research PC, as I had no idea about it, I was absolutely convinced he was going to pass before the summer was over and couldn't ever see his health improving but it did and hopefully in a couple of months time, you'll be saying the same too.

Best of luck with the blood tests and consultant's appointment on Tuesday, let us know how you get on.

lots of love xx

Judith16
Posts: 25
Joined: Sat Dec 19, 2015 7:09 pm

Re: Totally in awe of my wonderful Husband!

Postby Judith16 » Sun Jan 24, 2016 9:03 pm

Hi
No he had not really been ill for long, tired, losing weight, discomfort. They thought it was gall stones, kidney stones or stomach ulcer. As we had private health insurance we were sent for a CT scan after the results for the above came back normal.

Its just been a bad weekend!!

Proud Wife
Posts: 740
Joined: Sun Jan 17, 2016 9:28 am

Re: Totally in awe of my wonderful Husband!

Postby Proud Wife » Sun Jan 24, 2016 11:01 pm

I know - don't forget, you are probably still reeling from the shock of your husband's diagnosis and the unfairness of it all. You said it yourself earlier, it's a roller coaster of emotions and you are going to have a bad weekend here and there. Tomorrow is a another day and hopefully in the morning if you've been able to have a good night's sleep, you will feel a little stronger to cope with what's being thrown at you. If you want to have a chat either by email or by phone I think you can ask for your details to be passed on to me somehow? Perhaps Leila, Sandra or Didge could advise further if that's something that would help you Judith?

You've taken the first step to come on here and chat which I hope will help you. I've only started posting in the past few days but suddenly, I don't feel quite so alone anymore!

Night night xx

PCUK Nurse Jeni
Posts: 1111
Joined: Mon Jun 14, 2010 1:30 pm

Re: Totally in awe of my wonderful Husband!

Postby PCUK Nurse Jeni » Mon Jan 25, 2016 12:59 pm

Hi Judith,

Although not nice to be saying this, but welcome to the forums.
So sorry to hear about your husbands diagnosis, and the shock you have all had from such a blow as this.

We hope that you find some help and comfort from the forums, and we know there is a very supportive community on here.

In the meantime, should you wish to contact us, please feel free on support@pancreaticcancer.org.uk or call the freephone number on the home screen.

Kind regards,

Jeni, on behalf of nursing team.

Didge
Posts: 826
Joined: Sun Dec 29, 2013 10:35 am

Re: Totally in awe of my wonderful Husband!

Postby Didge » Mon Jan 25, 2016 2:16 pm

Hello Judith, you can always ask the moderators if you want to be in contact privately and they will act as go betweens until both parties have given the ok. And if anyone ever emails me and does not get a reply, it's because I haven't received the email, which has happened before! Yes, one day at a time is the way to go - but as you say, easier said than done sometimes. Hopefully your husband will feel better soon and able to restart his treatment. It is definitely a roller coaster cancer and people can be in awful states and then recover to a great extent for longer periods. Seize the moment when things are good and have some good times when you can. x

Proud Wife
Posts: 740
Joined: Sun Jan 17, 2016 9:28 am

Re: Totally in awe of my wonderful Husband!

Postby Proud Wife » Wed Jan 27, 2016 9:02 am

Hello Didge, any news on the imminent arrival? Hope all is well with mum to be!

Not sure if I should be starting a new topic but I have a question regarding CA19-9 markers? Having read quite a few stories now on this forum, I have noticed that everyone seems to have had much higher markers than my husband.

Hubby's tumour marker was 109 when diagnosed at "advanced stage 4" which went as low as 22 at one stage during chemo and on last blood test was 33 which is still within normal range. I don't understand how his cancer could be so advanced with such a low marker, when other people have markers in the thousands. Does this mean his cancer is not so aggressive or am I clutching at straws?

He's never had a biopsy taken; he was quickly put on folfirinox as soon as he was diagnosed but again, I see that many people have had biopsies taken. These are 2 questions I keep meaning to ask his oncologist but keep forgetting!

Any comments gratefully received, thank you!

Fifi

Re: Totally in awe of my wonderful Husband!

Postby Fifi » Wed Jan 27, 2016 2:29 pm

Hi Proud Wife,

You don't need to start a new thread, unless you want to of course. This is YOUR thread. No one else's. When people are thinking of you, they will come to this thread. If you started on someone else's thread, then no one could find you, and you wouldn't get the support you deserve, as you wouldn't have your own 'story'. Does is make sense?

With regards to Ca-19 number, it is quite an individual number. For example, 100 could be really high for me, but for you, it could be a low number. I think what is probably best, is take the first reading and compare others to it when you get them. I have found that you have to ask for future results of these. I was only given the first results and I had to make a point of chasing the others.

I know when Dad was first diagnosed, his number was 1200. As the treatments went on, it came down, and was 200 something at ine point. After his break, it went to 25,654. So obviously that number was incredibly high for my Dad. Have I been clear? If you want it explaining a bit better maybe Didge will reply, she is better with words.

I am a bit confused though as to why your husband hasn't had a biopsy. How do they know what they are dealing with? I would most definitely give the oncologist a call and ask him why one hasn't been taken. Sorry I can't help you more wih that, I really don't know why he hasn't had one.

Leila xx

PCUK Nurse Jeni
Posts: 1111
Joined: Mon Jun 14, 2010 1:30 pm

Re: Totally in awe of my wonderful Husband!

Postby PCUK Nurse Jeni » Wed Jan 27, 2016 3:53 pm

HI Proud wife,

The case of this being an "individual" number is true, but feel needs a little more explaining.

Ca 19.9 (Carbohydrate Antigen) can be raised in several cancers - such as pancreatic, gastric, oesophageal, bile duct and gall bladder cancer. This is a protein secreted by highly active cancer cells. Anything below 37 is a normal reading, and anything above this, is abnormal. Of course, there are degrees of abnormality!

For some, their markers will never go any higher than the hundreds, for others, they go into the thousands, and tens of thousands. Having high tumour markers on their own does not constitute what makes an "advanced" cancer.

Advanced cancer is cancer which has spread to other organs, and this can be the case even with low tumour markers. This is why they are not taken as a "stand alone" to diagnose, or predict outcomes, but with the bigger picture - CT scans and how the patient is.
There has been some research into prognosis and very high ca 19.9, and this has shown that a very raised ca 19.9 can indicate a poorer prognosis.

The biopsy question is a more complex case. Gold standard for inoperable pancreatic cancer is to have tissue diagnosis to ensure the right chemo is given. Occasionally, you will get an oncologist who has enough "evidence" from scans etc...to get on with the chemo, and not wait for a biopsy.

In many cases, a biopsy or even several biopsies can be taken and results "inconclusive", meaning that they did not see cancer cells in the sample, even though they know this is a tumour, looks like a tumour, behaves like a tumour etc.... Clearly, the chemo worked, so was the right one, so the matter of the biopsy is less relevant at this stage, but you can ask the oncologist should you wish. Its unlikely they would do a biopsy at this stage, unless hubby was going into a clinical trial at some stage.

Kind regards,
Jeni, Support Team.

Didge
Posts: 826
Joined: Sun Dec 29, 2013 10:35 am

Re: Totally in awe of my wonderful Husband!

Postby Didge » Wed Jan 27, 2016 5:51 pm

Hi Pw
CA19-9 levels are specific to a person and are a good indicator, taken along with everything else like how the person is feeling, blood tests etc. as to whether the chemo is working. So you may have a fairly low marker at the beginning or a much higher one but that is what will be watched, whether it is increasing or decreasing. Around 80-85% of adenocarcinomas of the pancreas will cause a raised CA19-9 level as far as I am aware but decreasing with treatment is a good sign that the treatment is working. Other things can cause the level to be raised though and there are frequent blips of up and down, but a sudden significant increase would be cause for the doctors to look at what might be happening. As for a biopsy, radiologists, so I am told, can take a good guess at what they are looking at from the scan and to treat your husband with folfirinox, which is pretty heavy duty, without a biopsy, shows they must have been pretty confident as to what they are looking at. One bonus in not having a biopsy is that you do not get the results of what it looked like under the microscope. Poorly differentiated tumours are more aggressive than well defined tumours so if you don't know, assume you are in the latter camp!
No news of the baby yet...
xxx

Proud Wife
Posts: 740
Joined: Sun Jan 17, 2016 9:28 am

Re: Totally in awe of my wonderful Husband!

Postby Proud Wife » Wed Jan 27, 2016 7:41 pm

Oh thank Leila, Jeni and Didge so much for your detailed replies. I really appreciate it! What you all say makes perfect sense now. And I agree Didge, sometimes too much information is not good! We know what we are up against and have complete faith in the oncologist but sometimes it doesn't hurt to make sure that nothing has been overlooked.

Looking forward to hearing some happy baby news soon!

Have a good evening xx

Fifi

Re: Totally in awe of my wonderful Husband!

Postby Fifi » Fri Jan 29, 2016 6:41 pm

You are welcome.

Hope your husband is ok at the moment.

Don't be scared to ask questions PW, that's what we are here for. We all want ti help in any way we can.

Leila xx

Proud Wife
Posts: 740
Joined: Sun Jan 17, 2016 9:28 am

Re: Totally in awe of my wonderful Husband!

Postby Proud Wife » Sat Jan 30, 2016 5:52 pm

Thank you so much Leila. Your words are so kind and very much appreciated. I'd thought I'd be chatting more to people who are currently going through this ordeal, rather than those who have lost their loved ones and it's just so lovely that you all take the time to come on here.

I hope also, that my sharing hubby's story, I can try to help others who have only just been diagnosed.

Didge, presume no baby news yet?!! xxxxx