Patrick Swayze

[Ellie]

Hi all

Just seen the sad news that Patrick Sayze has lost his battle with pancreatic cancer. It's upset me because, in a way, I was using his progress to stay positive. He seemed to have fought his way back to health and I thought he would make it.

Update on my husband is that he is doing well at the moment. He's had a scan, after 3 months of Gemcetabine, which we are hoping will have either shrunk the tumour in his liver, or at least slowed it down. For those who don't know his back ground, he had a whipple in July 2008, coped with pneumonia, a pulmonary embolism and a bowel resection in the months after his op. He'd just about finished his course of chemo when a secondary tumour was found in his liver, in April this year.

His chemo was cancelled last week as, for the first time, his blood levels were too low. We have been out and about a lot, taking breaks away in our caravan when we could, so perhaps he's overdone things. I'm now making sure he gets more rest and takes it easy, so hope that helps.

I know it sounds silly, but I was using Patrick Swayze as a marker for us - he was doing well, so my husband would do too! The straws you grasp at....

Anyway, my best wishes go to everyone who is still fighting their own battle with pc.

Ellie

x

[Nardobd]

Hi Ellie

Patrick Swayze's death is indeed sad, particularly since he seemed to be doing so well only a few weeks ago. He was a huge inspiration to everyone affected by pancreatic cancer. One of his gifts to us and our families is that he has raised the profile of the disease significantly and that will hopefully ensure that more research is carried out.

I'm glad to hear that your husband is doing well at the moment and I hope that the scan shows that the chemotherapy is working. Do let us know when you've seen the consultant. With Gemcetabine, we were told it's fairly common for blood levels to be affected and that some people never get to have their "day 15" treatment (ie the last of the three treatments in any cycle).

Nicki xx

[Juliana]

Hello all....

News of Patrick Swayzee broke a couple of weeks after I was diagnosed with Pancreatic Cancer, Feb 2008. It's sad to see him lose the fight, and yes - you do use him as a marker - even though he is 20yrs older than me, a smoker and a ex-drinker. I often tried to find out what type of Pancreatic Cancer he had so I could compare our progress etc, but could never find that type of info.

I am sure with his fitness background he would have been into 'juicing' etc - which is something I have recently started doing, and I know he was on chemotherapy, and that he'd had cyberknife initially. Atleast he was man enough to say how scared he was and that he was going through hell - not many men especially in the public eye would confess to such emotions.

I often wonder if I had limitless funds - could I beat this thing - but it just goes to show that money can't buy you everything. However, his name/fame has brought Pancreatic Cancer to the world media and I think his films won't be his only legacy.

To Ellie and Nicki, well done to you both for being pro-active and supportive to your hubbys during all of this, my husband is great - but doesn't read/research or often talk about cancer which makes it difficult for me sometimes when I need to off-load etc. He still believes I will beat this, I guess that's his way of coping with it all

Kind regards,

Juliana

[Ellie]

Dear Juliana

Learning of Patrick Swayze's death must have affected you more than most, because of the timescale with your diagnosis. You are so young to have this awful disease. My husband is 58 and I still think he is too young to have it , knowing he may never see our daughter get married or have kids, but he is still 20 years older than you.

How ae you coping? Do you have children? I think Nicki & I are the same, in that reading and researching (Nicki far more than me), is what keeps us going and I feel I have to be doing something. I expect your husband feels helpless, like the rest of us carers, and men generally find it harder to talk about their emotions, don't they. I, too, tried to find out exactly which PC Patrick had, but I could never find any detailed info, either.

Don't forget, if you ever need to talk about your worries and feelings, you can post a message on here and you will have the support of everyone. It helps to get things out of your system and compare notes.

Please keep in touch and let us know how you are doing.

Best wishes

Ellie

x

[Juliana]

Hi Ellie,

I learned that whatever type of Pancreatic Cancer he had, it had spread to his liver and he was too ill to complete the series he was filming so they put a halt to it in June, saw some interviews on Youtube....he was positive about the fight, but also realistic about the possible outcome.

Yes, I have 3 children, Joseph is 6.5yrs - Summer is 4.5yrs and Raphael is 21months.

I was diagnosed during my Whipples in Feb 2008.....2 months after having my baby.....it was not a good time.

Originally the tumor was found after my 2nd child, by accident. That was in 2005 and a needle biopsy result pointed to it being a 'serous cyst'. I remember to this day my specialist saying "There are two types of cyst, one that turns into cancer if left - in about 10/20 yrs.....and one that will never turn to cancer - you have the one that doesn't turn".

If only I had read more about it then - but like most people, you trust the experts with your life.

Kind regards,

Juliana

[Ellie]

Dear Juliana

My heart goes out to you. To have 3, such young children, and be going through all this. What an awful shock it must have been for you too, after being told your cyst wasn't cancerous, to have to then undergo a whipple and then learn it was cancer after all. How on earth have you coped with it all?? A new baby, a whipple and then the worst is confirmed. Yours is one of the saddest stories I've heard about PC. To say it was a bad time must be such an understatement!!

Where are you now with treatment? You must have had chemo? Is everything stable now? Sorry - I don't know if you've posted anything in another section which I've missed reading.

The one thing that strikes me is that there isn't a hint of self-pity in your posts. You must be a very strong person to have coped with everything and I sincerely hope you stay strong and well and enjoy every single minute of every day with your family.

Keep in touch.

Love

Ellie

x

[Nardobd]

Hi Juliana and Ellie

Ellie is right in what she says, carers do feel helpless. I know that Ellie and her husband feel the same as Ted and me - we have to believe that a miracle will happen because we can't imagine being parted and I suspect this is why your husband is so convinced that you will beat PC.

Part of the reason I research is that it means I'm doing something. The other factor is that I'm determined that if clinical trials show that there is a possible treatment which may either lengthen Ted's lifespan or (please God, please) help him to beat this horrible disease entirely then I'm going to be one of the first to know about it! I can then share it with the wonderful people who make up this community. I'm not working at the moment so have the time to do research.

As Ellie says, you're welcome to share any worries or feelings you might have with us all. If you just need to vent or off-load then that's fine too - we all have bad days and sometimes shutting the door and participating in primal scream therapy just isn't enough!

Kind regards

Nicki x

[Juliana]

Hi Ellie,

Well - after the Whipple I had 3 months of Gemcitabine and Capecetabine followed by 20 sessions of radiotherapy. That course of treatment ended in September 2008. I was scanned in November 2008 and that was classed as my 'baseline' scan. I was then seen every 3 months and had liver functions and CA19-9 tests. All my tests were great, like nothing had ever happened, my CA19-9 would be around 7.

Last Christmas I was aware of a dull ache in my back - very very mild, hardly noticeable but I mentioned it to my oncologist, but my bloods were good, no swelling in my lymphs, appetite was good etc - so no obvious alarm bells. February I mentioned the ache had increased, but again nothing else pointed to anything sinister. Come May, the ache would wake me 3-4 nights of the week and I was starting to get concerned, so at my appointment I told the oncologist and was advised that 'everyone gets aches and pains....' then went on to hear how much pain his knees cause him. In his defence, my bloods were good, appetite good, no swellings etc....but come July I couldn't wait any longer and asked for an appointment, and a scan. The scan showed the cancer had returned, a tumor surrounding my superior mesenteric artery, and multiple sub-centimetre tumors in both lungs. We had this news the day we were flying away for 2 weeks holiday in Menorca.....great.

The start of the holiday was ropey to say the least, I was in pain, had problems eating, was scared as my insurance didn't cover me for anything 'cancer related' and of course was devastated with the news and furious with my oncologist for not taking me more seriously.

As the days went by, the pain subsided, after weeks of it keeping me awake every night, it went.....by itself. I also developed a great tan.... We enjoyed, the kids enjoyed and I tried not to cry too much at what the future held.

So, when we returned I started chemo, just Gemcitabine this time - 7 cycles straight, then hopefully a scan to see if it's had any effect. I have done 5 sessions so far, and yesterdays session was hard going.....the nurse took 3 attempts to get in, saying my veins were collapsing or that she had touched a valve....the back of my hand is now a lovely shade of green. Also I am finding the smell difficult to deal with.....I can smell a chemical smell and it turns my stomach (when I am at the CDU) and I start to feel nauseous even before I get there.

The more I have chemo......the less I want it.......I need a different way of fighting this disease.

Thats why it's great to see Nicki's extensive research on here, and her views etc on it.

Currently I am taking Co-enzyme Q10, Acidophilus, Aloe-Vera Juice, Spirulina Powder and I've bought some Apricot Kernels however they are not bitter and I've been told only the bitter ones have the B17. I am also going to buy some Omega 3 oil, just need to find a good one.

I've tried giving up as much sugar/sweet/chocolate as possible, although I have never really had a 'sweet tooth' as such, more into savoury but I do love marshmallows I've also cut down on my dairy intake, I still have yoghurt though, and also no red meat.

Thanks both for taking the time to reply, hope this post wasn't too long!

Kind regards,

Juliana

p.s. As for how I coped with it all, I have wonderful parents who help me whenever and with whatever....(*recalls her Mum driving her to a MacDonalds late one Sunday night, a few weeks after the Whipple op, so I could satisfy my odd craving for a beefburger......damn that burger was good....*)

I also married the man I knew would be the father of my children.....even before we had ever kissed........he is a great father and good husband (although, there is always room for improvement with the husband side of things - and I make sure to point this out to him on a regular basis...

[Nardobd]

Hi Juliana

Whilst I'm not working (which I hope won't be for too much longer!) I'm spending time looking into options for Ted and I'm happy to share information with others. I have to say, though, that I have a healthy suspicion of anything that's not been proven in clinical trials. As Patrick Swayze says in his autobiography, if anyone has a genuine 'cure' they wouldn't be hiding it or neglect to put it to the test because it would make them a fortune.

That being said, it's each to their own and I wouldn't ever dissuade anyone from trying natural or complementary medicine alongside traditional treatment. There is also evidence that some complementary medicine does have an effect such as Omega 3, particularly when taken with a compound found in tumeric, as I mentioned in a response to one of Ellie's messages.

I'm sorry to hear that you're having difficulty with the chemo. Ted's veins collapsed too towards the end of his sessions and he sported some interesting shades of bruising. The veins do recover, however, when the chemo finishes.

I'm pleased to hear that you're getting a lot of support from your family - that's just how it should be.

Kind regards

Nicki

[Ellie]

Hi everyone

Brian, my husband, saw the specialist today to get the results of his first scan after 3 cycles of chemo since the met was found on his liver.

We had good news and bad. The good news was that the tumour had shrunk by half! The bad news was that they had missed a second met 3 months ago, found it this time, but that one has grown slightly (about 2mm, if I remember rightly). Obviously, that was a shock to us and not what we wanted to hear. I asked how one tumour could shrink and another could grow. It's to do with the blood supply to the cancer cells. If they don't have a good blood supply, the chemo can't get to them as well, so the first tumour is reacting to the chemo well, but the new one isn't.

We were also told that Brian's CA19-9 marker had been over 300 in June (which was after he'd had a break from his first chemo) but it is now down to 68, so although it's not the be all and end all, as we've all said before, at least it's gone down dramatically, rather than up.

The specialist is happy that Brian is doing well in all other aspects of his health and confirmed that he will be continuing the chemo, which is a big relief. Worst case would have been that the chemo had had no effect at all and they were going to give up trying.

So, although we're unhappy about a second tumour, we just have to hope that it is slow growing, or starts to react better to the chemo. In the meantime, it's business as usual....living as normal a life as possible and staying positive.

Hope everyone else is doing fine.

Love

Ellie

xx

[Nardobd]

Thanks for letting us know, Ellie. What a rollercoaster - good news and bad all in one! I'm glad that you're both thinking positively and, of course, I'll keep you both in my thoughts.

Love

Nicki x