A forum for advanced pancreatic cancer issues

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Juliana
Posts: 178
Joined: Thu Sep 25, 2008 1:36 pm

Advanced Cancer Patient ----- > Juliana

Postby Juliana » Sat May 29, 2010 4:48 pm

Hi guys,
Woke up this morning feeling shaky, cold and shivery. Weighed myself and found it to be 6st 12lb....so I have lost weight again.
Got downstairs to see the delivery of 3 brand new pine hinged boxes, memory boxes I had bought online for the kids.

Realisation hit, I am dying and it's happening quicker than what I had hoped.

I have cried many tears today, and I'm in the process or writing a letter to my kids, just blabbering on how much they mean to me - I just can't express it well enough or to be truthful there is not enough paper in the world for me to write down my love for them.
My love for my enduring husband too.....10 years I have known and loved him and it is not enough for me.

I am due to fly to Spain on Monday, but with normal travel insurance that doesnt cover cancer related stuff I worry I will leave my husband with the job of paying for a corpse on the return journey. As always, I've left it too late.

I did ring about the CV247, but the DR. was away. (Dr. Ross Taylor (female) St. Francis, Berkenstead 01442 869550)

I feel it's not the lungs that will kill me, but my stomach and guts - I've had the pains there since December - only getting the palliative care team involved end of Feb, beginning of March - so 5 months of the cancer working on me I guess is quite a long time to go without treatment. I did feel I was doing the write thing though, especially with the positive feed back of the scans, but I guess it hasn't worked out that way - and being the sneaky type of cancer it is, it's hidden itself well enough to keep working away un opposed.

My regret is that I may pass close to my parents birthdays, both in June (13/23).

Tonight we tell our children the news. They are enjoying a carefree day with the grandparents at the moment. Know that I love them more than life, and it is the worst of tortures being taken away from them so early in their lives, so soon into my journey as their Mummy.

You guys have been a great help, like distant family member offering advice and support or just there for a cyber cuddle. Thank you.
I wish you all the best of luck for the future, stay strong and live full.

If I make a miraculous recovery I will frequent the boards again, but see this as the start of possibly a short good bye.

Juliana x

clair2305
Posts: 154
Joined: Thu Aug 13, 2009 1:43 pm

Re: Advanced Cancer Patient ----- > Juliana

Postby clair2305 » Sat May 29, 2010 5:48 pm

Juliana

oh your post makes me cry too.

Take this big cyber hug from me <-------------------------------------------------> (the <> are my hands)

I hope to hear from you soon and that this is not the start of goodbye, have a great holiday.

I'd want to say thank you to you as well, you've been a great source of support to me with this horrible disease and yes I too feel like you and others on here are my extended family.

Much love and hugs

Clair

Nardobd
Posts: 479
Joined: Sat Feb 14, 2009 6:25 pm

Re: Advanced Cancer Patient ----- > Juliana

Postby Nardobd » Sun May 30, 2010 4:54 pm

Like Clair, I have tears in my eyes.

Juliana you are so very dignified and brave. You've an inspiration, a friend and a member of the cyber family who is very much loved by all of us. I hope you are wrong and that we have a chance to speak again after the holiday you deserve so much.

With love

Nicki x

Ellie
Posts: 302
Joined: Thu Sep 04, 2008 11:03 pm

Re: Advanced Cancer Patient ----- > Juliana

Postby Ellie » Sun May 30, 2010 5:15 pm

Dear Juliana

How incredibly hard it must be for you right now, having to think the worst and make all your plans. How can life be so unfair to those who don't deserve it??

My heart goes out to you. You are so positive and brave and I hope that strength helps you cope with all the things you have to do, and that you can then have a little peace of mind.

I truly hope your holiday goes well, that the sun will make you feel that bit stronger and we will want to hear all about it when you get back.

Thinking of you, sending you lots of hugs and love.

Take care,

Love
Ellie
xxxx

pauline
Posts: 48
Joined: Mon May 25, 2009 3:24 pm

Re: Advanced Cancer Patient ----- > Juliana

Postby pauline » Mon May 31, 2010 7:18 am

Hi Juliana

I have been following your posts for a while now. I am so sorry things haven't worked out for you.

I hope you have a great holiday, and come back and tell all about it on here

sending you and all your family the biggest hugs and kisses

all my love to you Juliana

Pauline XXXXXX

deb68
Posts: 34
Joined: Sat Apr 17, 2010 4:58 pm

Re: Advanced Cancer Patient ----- > Juliana

Postby deb68 » Mon May 31, 2010 10:39 am

Hello Juliana,

I so hope you manage to get away and enjoy some special time with your family.

My thoughts and prayers are with you all

With love

Debbie.x

LilyG
Posts: 37
Joined: Mon Nov 02, 2009 12:06 pm

Re: Advanced Cancer Patient ----- > Juliana

Postby LilyG » Thu Jun 03, 2010 4:42 pm

Hi Juliana,

I am just hoping with all my heart that you managed to get away on holiday - you have been so looking forward to it.

So, with fingers crossed, I say 'welcome back' x

Juliana
Posts: 178
Joined: Thu Sep 25, 2008 1:36 pm

Re: Advanced Cancer Patient ----- > Juliana

Postby Juliana » Thu Jun 10, 2010 9:48 pm

Hello all,
Well.......I made it to Spain, and back .
It was a little ropey on the Sunday, but a trip down the hospital and check up with a Dr. who gave me the thumbs up to travel gave me the confidence to go through with it. I honestly thought that I would be putting my husband in a precarious situation in which he would have to find another way of getting me on the plane home, hence my worry.

The holiday went smoothly, Sunday night we managed to book our parents on the same flight, and into a villa on the street behind us - so they could help with the kids, and with me.

I managed to sleep alot, saw lots of the sun....and swim in a warm sea....yes....warm....you read correctly. For all those who have to edge their way in, coaxing their body inch by inch, whilst chattering teeth try in vain to warm the rest of your body up by generating movement.....the sea at the Mar Menor in Costa Calida is WARM. Atleast 4 degrees warmer than the med at all times, but seriously, I walked in and went under without even a little twitch or tremble. Winner.

We were there for 5 full days, and I did find I took my abstral (break through pain killer) much less than I would have at home, which is always a bonus. The sun however did not have the miraculous healing effect it did last holiday, but no matter. The kids loved the holiday, and were in and out of the sea and pool daily.
I even managed a morning at a local market and even though I had told myself its not worth buying new clothes as I doubt I would get to wear them, they were so cheap I just couldn't help myself ;-)

There was one unfortunate incident, where my husband had left out strawberry tops on the worktops late at night, I went in to get a glass of milk to be greeted by a cockroach (the only bug I saw all holiday)....where I promptly turned and ran....straight into the wall in the bid to get out of the room as quickly as possible. My reluctant husband got rid of it by dual wielding two spatulas.....

On our return, feeling improved from the holiday I of course went and over did it two days on the row and have been paying for it since. :roll:

Anyway....
I have finally spoken to Dr. Ros Taylor - very nice lady. She advised I am suitable for the CV247 and that alot of her patients take it alongside chemotherapy (as I'm thinking of doing capecitabine). She also advised I contacted Dr. Nicola Hembry from Bristol, who I had contacted some time last year for advice, but she would not oblige via email and had requested I consider a consultation.
http://www.drhembry.com/
I didn't pursue it as I couldn't make my mind up.
Dr. Taylor spoke highly of her stating she was a fully qualified dr, who then concentrated on a more hollistic approach to treating cancer, and is an exceptional nutritionalist. So....I will think about it.
The CV247 comes in small bottles costing £15, and you take it by adding it to some juice, along with some vitamin c powder.
She said once the initial dosing to get the maximum benefit, the monthly maintenance dose will cost about £30 (which isn't too bad).
She also advised that CV247 was no wonder drug, but it has been proven to inhibit cancer growth and does seem to work with a variety of cancers, but she has not treated someone like myself.

I also emailed my consultant nurse to see if she had found out how much my tumors had increased by, she hadn't - but she would do. Also asked her about Relyosin and she said she had passed the info onto my oncologist who was going to read up about it.

Mentally, I am in limbo - coming home brings you back to reality (which is never fun) and naturally I am starting to feel down at organising my treatment/will/funeral etc etc. My body is definately declining on a weekly basis, the weight loss is playing a big part in it I am sure, but my stomach/intestine just don't seem to respond to the food I am putting in, so maybe an appointment with a nutritionalist may be the way to go.

Also, I've been reading some of the new posts, new members - so many, breaks my heart. I read their story and want to add something to help, but just feel to exhausted at the moment, so I'm sorry if I am quiet, I'm not ignoring you - I just find it very tiring at the moment. The msg left by Darren even frightened me a bit - I wasn't sure whether I wanted to know as he could be talking to me, 38yrs old married with children and dying from pancreatic cancer. I did look him up on Facebook....but went no further. And the gent with the Italian Mum.....my mum is Italian, and so was my Nonna who died 2yrs ago she too had cancer, lung cancer but it was a combination of things that she died from in the end. I feel for you, living a distance. There is no easy way - if you want to help and find out, you will need to book time off, live there with her and make an appointment that you both attend so you know what is going on. If she is getting loose bowels, stomach colic and gas it may be she is not making the digestive enzymes to absorb the nutrients and fat from her food. She needs to take CREON pancreatic enzymes with ALL FOOD/MEALS - it will make a difference to her weight and her bowels will return to some form of normality. The lady with the farmer type husband *hug* - if chemo is no longer an option maybe try something off the wall - what have you got to lose? Something like B17/novodalin supplements or maybe even the CV247 could be worth a try. All my chemo/radiotherapy has been inconclusive as to whether they did anything or not, I have never seen any shrinkage and my cancer marker even though its low has slowly risen continuously with or without treatment. I know more people have posted, and I'm sorry I haven't mentioned you, but I am glad others have welcomed you in and given you the support/answers you need - you will always get a reply to a post here :D

Anyway....I am tired, so logging off for now.

Thinking of you all and thank you so much for the well wishes xxx

Juliana x

Ellie
Posts: 302
Joined: Thu Sep 04, 2008 11:03 pm

Re: Advanced Cancer Patient ----- > Juliana

Postby Ellie » Thu Jun 10, 2010 10:32 pm

Juliana - how good it is to hear from you again! I was only wondering yesterday whether to write something for you, in case you were reading the messages but didnt feel like posting yourself.

I am really pleased to hear that you got so much pleasure from your holiday. I'm sure it will have done you good - just feeling the sun tends to make us all feel a bit better!

Anyway, just to say I am thinking of you and hope you will take it easy and look after yourself.

Lots of love and hugs

Ellie
xxx

Juliana
Posts: 178
Joined: Thu Sep 25, 2008 1:36 pm

Re: Advanced Cancer Patient ----- > Juliana

Postby Juliana » Sat Jun 12, 2010 10:23 pm

Hello all,
Well, I decided to go ahead and make the appointment with Dr. Hembry, it's next Tuesday at 11.30am. This will be followed by an appointment with my oncologist on the Wednesday afternoon, which I am almost certain will result in me saying yes to the Capecitabine.
I'm a little disappointed I didn't receive an email from Dr. Ros Taylor, so I could then place the order for the CV247 - I will chase her up next week I guess.

Will update as soon as I have anything interesting to tell you,

love -

Juliana x

Juliana
Posts: 178
Joined: Thu Sep 25, 2008 1:36 pm

Re: Advanced Cancer Patient ----- > Juliana

Postby Juliana » Thu Jun 17, 2010 7:36 pm

Hi all,

I had my appointment with Dr Hembry and it was quite interesting. There were an abudance of treatments available, but which one to pick would be a difficult one to decide upon as all of them seem to offer great results (ofc). So, to make a decision it seems the best thing to do first is a chemo-sensitivity test. A genetic lab tests cancer cells taken from a blood sample, against 40 different types of orthodox chemos, and about 32 alternative treatments (including intravenous Vit C, CV247, Turmeric, Essiac, b17, Ukrain etc) - it has 100% result in vito and the results in vivo are 70% and above. This tests costs £1000.

The best she had to offer was in a clinic in Germany. It was ground-breaking treatment against the stem-cell of cancer tumors, the results were very promising and of course it is very expensive. It costs £1000 a day to stay at the hospital, and I am waiting for the full info on how much the actual treatment costs. She saw 4 patients in remission following this treatment, but I don't know what cancer they were suffering from.

She gave me some dietary advice, and a name of a drink recommended for pancreatic cancer sufferers called 'prosure'.

The following day I met up with my oncologist, learned that the growth increase of the lung tumors was small except for the one that had progressed to 2.7cm.
I expected to talk about chemo and capecitabine, but instead was told I was eligeable for a phase 1 trial, which I am in turmoil over atm. However, I do think I will go and see the professor heading up the trial for further information.

I tried opening up to my specialist nurse today, tell her how I was feeling about everything and how alone I felt in the decision making, although it has felt a bit like that all the way through to be honest. Nobody seems to know sh*t about this cancer, you are given a selection of things to choose from and its like a lucky dip. It feels the weight is on your shoulders and its down to you whether you choose correctly and live, or choose incorrectly and die.....but worse....as in - you choose correctly and will probably die anyway. I find it hard I guess, because I feel I shouldn't be in this position in the first place - they never gave me the choice 5 years ago when they found the 'cyst', yet now its all gone t*ts up, it's my responsibility to choose what to do next.

Anyway I was told today:
"I suppose in reality there are two choices – stop searching for something that may not be there, accept what will inevitably happen, and focus on time with your family so that they have wonderful memories of you or, as you are doing, look for alternatives"

Doesn't give you much hope does it.
It's a strange concept to me, 'accepting' that I am going to die, I challenge anyone with a lust for life to accept they are dying....and manage to get out of bed the following morning. For me atleast, it is not possible....I have tried, but I stop functioning, cannot bare to be around my children as if feels like someone is ripping my heart out from my chest and I can't breathe properly. I can't see properly as my eyes are full of tears, and I can't speak...as my words choke me.

Anyway, I will keep you updated of what occurs.

Juliana

CFF

Re: Advanced Cancer Patient ----- > Juliana

Postby CFF » Thu Jun 17, 2010 7:54 pm

Oh Juliana,

You're right, it just seems so abominably unfair that there's such little guidance and feels like a lottery!! Surely the 'professionals' should give you some more weighted guidance and advice on what to expect of these options.

When you got back from Spain you 'sounded' like some of your fight had been restored. And it 'sounds' like you're the kind of person that can't just 'accept the inevtiable' when actually there's some hope out there that trials, medicine, chemo etc can give you much more time than you (or your doctors) think you may have.

I'm sure you've said in a previous thread that we must 'try' and fight the fight. Won't it help to keep you going knowing that you're trying? I do'nt know. Maybe try and focus on the viable treatment alternatives and how they're really going to impact on you and make a decision. That's all you can.

I'm sorry - I just felt like I wanted to post something in response to your note, but I'm not sure that anything could possibly help )-:

Cx

jordan
Posts: 6
Joined: Sat Jun 12, 2010 10:53 am

Re: Advanced Cancer Patient ----- > Juliana

Postby jordan » Fri Jun 18, 2010 8:16 am

HI Juliana,
I am new to this site but have been reading posts for weeks! I lost my mam at christmas to this awfull cancer.when i read your posts it feels like we felt when mam was diagnosed 5 months before she passed away.We were for want of a better word"left to get on with it".We had to push for anything she needed(including pain relief).
We had chemo but she was so ill during this time we had to stop(some people dont have the side effects)I must say though my mam fought up until the end.We all miss her sooo much but feel the same as u said,alone with any decisions etc
BIG HUGS((((((((((())))))))))))to you all
Jordan x

taylogrd
Posts: 6
Joined: Thu Feb 11, 2010 9:20 am

Re: Advanced Cancer Patient ----- > Juliana

Postby taylogrd » Tue Jun 22, 2010 2:11 am

Hi Juliana,

Thanks for such an interesting and informative post.
I can see you've returned from holiday with a renewed drive to seek out anything that might help your situation and with a will to help others, as you so generously share the results of your findings with us all . Thank you.

This cancer is so difficult to deal with emotionally because as you say nobody seems to want to know and that has been the case for the last 40 years. There have been no improvements in death and life expectancy rates for pc sufferers in that time. I think the only standby drugs used are gemcitabine and the old 5FU chemo. drug repackage in pill form as capcitibine (much cheaper for the NHS to administer as a pill but no more effective).
My consultant has refused to give me anything else other than those two which are no longer working for me. He considers gem/cap a waste of time and the the cisplatin and oxaliplatin drugs to dangerous to use? Perhaps it is more likely that he regards the more expensive dual regime drugs as a waste of the hospitals time money because if any adverse side effects did kick in you could always stop the treatment. Then I might be taking up more of his time and a hospital bed all because I wanted to live a bit longer.

Who's to know all I know is that he has offered to ring the paliative care and has sent me home to die.

So thank you Juliana for your post it has given me some new hope I shall contact Dr. Nicola Hembry (her office is closed until Wednesday) and investigate this stem cell treatment in Germany. Is it the Xcell-Center in Cologne/Dusseldorf ?

I hope that by knowing your lust for live and drive for knowledge is a light for others to follow will in some way encourage you to go on and might help you to deal with the emotional roller coaster that we are on.
Look forward to reading your next post.

Your no 1 fan
Gordon

Juliana
Posts: 178
Joined: Thu Sep 25, 2008 1:36 pm

Re: Advanced Cancer Patient ----- > Juliana

Postby Juliana » Sat Jun 26, 2010 1:01 am

Hi Gordon,
Thanks for your msg :)

I think the clinic is in Stutgart, or near. I wouldn't get too excited - I received the information about the clinic and the stem-cell treatment wasn't actually listed under 'cancer patients', which I found confusing. The website is poor too - apparently it's still in the process of being put together, but there is hardly any info on there and nothing in English:
http://www.dr.ursula-jacob.de/
Other German clinic sites are far more informative.

I think I will go ahead with the chemo-sensitivity test, it's 1k - but it may be worth it.

For now, I will see what Leeds has to offer before I make any radical decisions.

Plus, my specialist nurse said she has heard of a patient in the CDU who goes to Germany for the hyperthermia treatment, I'm trying to find out a bit more about this.

I am holding off on the CV247 incase it jeopardizes the trial.

Apart from all the above I am considering whether to return to juicing and B17/apricot kernels just as a possibility.
I'm still just under 7st and can't seem to put weight on so have to be careful not to go on a too healthy a diet as I need the calories more than anything at the moment.

Latest bit of news is that they reviewed my scan for possible spinal involvement due to a strange thing happening if my painkillers wear off (my right leg stops working and starts to drag/limp) - but they can't see anything that points to that.

How about you G? Any news?

Juliana