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

General Updates

Postby Juliana » Wed Jan 12, 2011 1:00 pm

Thought I would start a new thread of general updates of all our situations. Basically things like - doing ok, no change or awaiting CT scan results or back on chemo......or blablabla discovered and not having the best of times.


I'll start it with myself.
Had a meeting with oncologist before Christmas, who basically advised the chemo treatment i'd been on seemed to have made matters worse, so for now I will be treatment free - and he scheduled an appt for end of Feb.
I'm still coughing, but noticed a change, the phlegm has moved from both lungs upwards towards centre of chest - it rattles alot but atleast each time I cough I can dislodge something. That something just looks like normal phelgm, no blood or brown/black bits....so I a guessing that is good.
My liver is my major concern due to the portal vein being blocked. This is causing my weight loss (again) - my ascites - my enlarged spleen - my very very dark urine colour - digestive issues - and ofc the liver itself is changing/dying due to lack of nutrition. Unfortunately even though I am on Clexane it will not help with that clot, and there is no op to remove it.

As I am looking like a walking skeleton.....I've decided to go on holiday, all the family and my Mum to help me out.....to Barbados :)
Leaving this Friday for 12 days.....can't wait to get into some hot sun.

So.....that's me atm - now it's your turn.

love -
Juliana x

PCUK Nurse Jeni
Posts: 1070
Joined: Mon Jun 14, 2010 1:30 pm

Re: General Updates

Postby PCUK Nurse Jeni » Wed Jan 12, 2011 4:20 pm

Hi Juliana,

Hope you and your family have a lovely holiday.

Jeni.

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

Re: General Updates

Postby Nardobd » Wed Jan 12, 2011 7:23 pm

What a great idea Juliana, although I'm sorry to hear about the liver problems. It's great to hear that you're getting away - any room for a little one in your suitcase?! :mrgreen:

Ted saw his consultant this afternoon and the CT scan result was the best we could have realistically hoped for - no change. As far as his bloodwork goes, the tumour markers are up (from 50 to 295) and his consultant wants to keep an eye on that to make sure it's not a trend. However, it looks like we have another little reprieve for the moment 8) Such a relief!

How about everyone else?

Nicki

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

Re: General Updates

Postby Juliana » Thu Jan 13, 2011 9:59 am

Thanks Jeni x

And what good news Nicki, for both of you - those words....'no change' mean so much.
What chemo was Ted on again?

Juliana

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

Re: General Updates

Postby Nardobd » Thu Jan 13, 2011 6:26 pm

Hi Juliana

Ted's on Gemcitabine - just bog standard monotherapy, but it seems to work for him so I'm not knocking it!

Have a great Holiday
Nicki x

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

Re: General Updates

Postby deb68 » Mon Jan 17, 2011 1:40 pm

Juliana

I so hope you have a wonderful holiday.

The problems you are encountering were similar to those of my daughter Gemma, with the portal vein blocked by a blood clot - it is such a nuisance as they cannot remove it and obviously the ascites then builds up so I fully understand your situation.

I truly hope the sun shines on you and your family and that you all have a very special time.

Sending love

Debbie.xx

pamela
Posts: 27
Joined: Sun Aug 08, 2010 9:52 am

Re: General Updates

Postby pamela » Mon Jan 17, 2011 6:39 pm

Have a great holiday Julianna.
I am still missing my dad and was thinking i was coming to terms with it at last only to find i'm back at stage one.

take care.
Pamx

PCUK Nurse Jeni
Posts: 1070
Joined: Mon Jun 14, 2010 1:30 pm

Re: General Updates

Postby PCUK Nurse Jeni » Tue Jan 18, 2011 1:57 pm

Hi Pam,

Sorry to hear you are feeling like you are back to square one in relation to your dad's death.
I am not familiar with your story -just joined 3 months ago and I work for PCUK.

If you would like to 'chat' it through at all, I would be happy to hear from you at support@pancreaticcancer.org.uk .
We would like to ensure that you are properly supported at this time and to see if there is any way in which we can help.

Best wishes,

Jeni.

PCUK Nurse Jeni
Posts: 1070
Joined: Mon Jun 14, 2010 1:30 pm

Re: General Updates

Postby PCUK Nurse Jeni » Wed Feb 02, 2011 3:24 pm

Hi Juliana,

How was your holiday? Did you have a great time?

Jeni.

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

Re: General Updates

Postby Juliana » Thu Feb 10, 2011 10:38 pm

hi -
did type a 1.5hr long post.....but site made me relog.....and I lost everything.....too angry to type it again.

Juliana

margb5343
Posts: 29
Joined: Tue Jan 18, 2011 10:42 pm

Re: General Updates

Postby margb5343 » Thu Feb 10, 2011 11:04 pm

Hi Juliana


Sorry to hear your news about this cruel disease.

I just lost my mum 2 weeks ago to pancreatic cancer and a brain tumour which from diagnosis of brain tumour to death was a very short 8 weeks and only 2 weeks from diagnosis of pancreatic to death.

I have been looking at alternative treatments for helping cancer and had noticed a lot of people mentioning the budwig theory of taking flaxseed oil and cottage cheese together which in a number of cases had shrunk tumours. I just thought I would mention it in case you hadnt tried it as anything is worth a try to help this horrible disease.

On a few sites it had mentioned that it could work in as little as a matter of days as long as it was the flaxseed oil and not the seeds. I had started mum on a holistic programme but unfortunately she lost her swallow so had only been doing it for 3 days.

take care
love margaret
xxx

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

Re: General Updates

Postby Juliana » Fri Feb 11, 2011 1:29 am

Hi Margaret,
Sorry about your Mum *hug*

Yes, I followed the budwig diet for several months whilst also becoming totally vegan - but it had no benefits, for me anyway.

Thanks.

Juliana

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

Re: General Updates

Postby Ellie » Sun Feb 13, 2011 3:16 am

Hi everyone

Thought I would update on Brian. He seems to have a constant battle with pain these days. Was recently in the hospice for 12 days because we'd had to call the nurse out at 5.30am for an injection of pain relief, then in A&E another morning at 4am. The docs in the hospice wanted to try new things and get him stabilized, so kept him in for a good while. They put him onto Abstral (said it was a "new" drug, but am sure Juliana has been on this for some time?). Seems to work quicker and one or 2 tablets of this is better than 6 Oxynorm each time. Problems start when they cut down on the steroids. He gets shooting pains in his ribs, severe pain across his chest (put down to muscular pain, but happens even when relaxing). He now gets a lot of really awful cramp in his hands, which spreads up his arms. All these things are caused by nerve pain, from the tumours in his spine. This is on top of the "normal" pain he has in his back on a regular basis, although the fentanyl patches mainly do ok for that (on 400mg). He was given support stockings as his legs started to swell badly (due to blood clot) and these have worked ok. Every few days, he then gets stomach pain due to constipation, which is an on-going problem with the morphine. It seems like he gets a different pain every day - we just get one thing sorted, then another one starts up again. His steroids have had to be increased slightly again this week so we're hoping some of the shooting pain and cramps will settle down for a bit. The docs have mentioned a nerve block or vertebroplasty (where a special cement is injected into the spine) for the future. Only good news is that a scan this week showed no further spread in his spine from end of last year. I was very surprised, as Brian seems to have had much more lower back pain in the last few months.

During his stay in the hospice, the occupational therapist arranged for a handrail to be fitted to our stairs, to help him get up and down. He now has a hospital bed, which can be tilted and a chair which can do the same. He can't lie flat, or on his side, so I'd been propping him up with a dozen pillows but he woke up in pain every single morning. They also arranged for a wheelchair, as he can't walk far anymore. We had bought our own but found that the smallest bit of a bump or jolt would result in seriously bad pain the next day, so hopefully his new one (measured up properly for it) will cut down on that. It's been nice to have this kind of practical help.

Our lives are just one long round of pain and pills. He takes 26 different pills + an injection for his blood clot every day - and that's without the Abstral & Oxynorm for breakthrough pain. I know we should be grateful that he has these things, but when I look at him and see him suffering, see him struggling to do the smallest everyday things, see him getting ever weaker....my 6ft 1in husband who used to be so fit and strong , just wasting away, sometimes it's just too much to bear.

Anyway - my thoughts are still with Juliana. You have even more problems that Brian, so my heart really does go out to you, especially having your children.

Nicki - glad to hear that Ted is stable. He's done really well, considering his original prognosis!

Love
Ellie
xx

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

Re: General Updates

Postby Juliana » Sun Feb 13, 2011 5:14 pm

Hi Ellie,
Long time no hear.....thanks for Brian's update. Good news his scan shows no sign of spread - but the pain increase is a worry....my 'team' can never tell why or what, which is really frustrating. They never tell me the measurement increase, I have to 'request' it. And when they do finally come up with a 'cause' for it.....it turns out it was something I had approached them with 6 months prior!

I've been on Abstral for nearly a year, so can't see how this is a 'new' drug.
How much is he on - per tablet? I am on 800mg and can take x 2 if required, my Fentanyl isn't as high as Brian's - I am on 187mg.
How does Brian cope with the feeling of sickness the patch swap causes? If I don't take Levomapro...(?) cant remember spelling - everything I eat or drink sits in the stomach, then comes out more or less without any warning! Only prob is that the tab causes drowsiness likened to a sedative effect for about 24hrs, thats why I do it late at night.

Juliana x

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

Re: General Updates

Postby Ellie » Sun Feb 13, 2011 7:02 pm

Hi Juliana

I thought you'd mentioned Abstral quite some time ago, so it is strange why Brian's docs think it's a new tablet. At least he has it now anyway.

He uses 4 x 100mg patches every 3 days and has no problems at all with sickness when he changes them. It doesn't matter what time of day he changes them. Perhaps you are more sensitive to them? Not nice for you at all. He takes a 200mg Abstral to begin with (for breakthrough pain), then 15 mins later can take 100mg, then if that doesn't work he takes 120mg of Oxynorm.

Love
Ellie
xx