General Updates

[Juliana]

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]

Hi Juliana,

Hope you and your family have a lovely holiday.

Jeni.

[Nardobd]

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?!

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 Such a relief!

How about everyone else?

Nicki

[Juliana]

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]

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]

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]

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]

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]

Hi Juliana,

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

Jeni.

[Juliana]

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]

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]

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]

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]

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]

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

[Ellie]

Another update on Brian.

His Abstral was increased in the first week of use to double the dose, which seemed to be working better. He had a few days with hardly any pain until late evening, which was great. Things seemed to have settled down until yesterday, when I was driving him home from the hospice day care centre. I made a left turn and suddenly he screamed out. He was in pain all the way home and couldn't sit down or stand up without being in pain. After taking his Abstral & every other painkiller on the daily list, we eventually had to call the emergency doctor out. It seems his rib has either fractured, or there is some damage to the muscle in his chest wall. Our own GP came out today and arranged an x-ray, but we won't know for sure what it is until we get the results on Tuesday.

Just when we thought things were stable, this has to happen. In fact, at the day care centre the doctor told him he was fine to go away for a short break in a fortnight, so I booked to go to Devon. Brian has been looking forward to going for some weeks now, so I just hope things will improve and we can still go. Both doctors have said that the cancer has weakened his bones and that bit of pressure in the car when we turned could have caused his rib to fracture. There's nothing they can do about it, so it's a matter of the right pain relief until things heal.

Hope everyone else is doing ok.

Love

Ellie

x

[PCUK Nurse Jeni]

Hi Ellie,

Sorry to hear about Brian.

He may be able to have radiotherapy to the rib?

It is really good for cancer pain in the bones.

Maybe enquire about it?

Jeni.

[Nardobd]

In typical ironic fashion, Ted's latest CT results show a significant growth of his tumour and he's back on chemo - capecitibine this time. The tumour is now pressing down on his mesenteric artery which accounts for his stomach pain. As always, questions are met with vague replies, accompanied by the caveat that Ted's illness hasn't followed the usual progression of the disease - which just frustrates and irritates us.

[Ellie]

Oh, Nicki, I am so sorry to read about Ted. It's not the news you wanted, even though you were in limbo with things just lately. At least you have the option of more chemo and Ted has always done well with it, so fingers crossed that this does the trick again.

Let us know how he gets on and my thoughts are with you as always.

Love

Ellie

xx

[Ellie]

Jeni -

Sorry I didn't respond to your last message to me on here.

Thanks for the advice but, as it turned out, Brian's rib wasn't broken after all. Two doctors had said it was but an x-ray showed no damage. He has an infection on his lung, which he's had for a while, but that can't have caused such a sudden, severe pain which appeared to be a broken rib. Ironically, he later started getting severe pain in the other side of his chest, but both sides seem to have eased off lately. It's hard to know what is going on at the moment. What seems to be helping is some slow release ibruprofen which he takes at night. He always used to wake up in bad pain every morning, after lying on his back, but these new pills seem to be helping. His chest, however, rattles and wheezes a lot during the night and makes him cough, so not sure if this is the infection. He will be seeing the hospice doctor tomorrow, so maybe we will get to know more then.

Thanks again for your help.

Ellie

x

[millyjo]

Hello Nicki,

Keep checking in to see how everyone is doing, including you and Ted.

So was pleased to read your post as an update, but sorry to hear about Ted's results.

Hope you are baring up.

Thinking of you both.

love

Millyjoxx

[millyjo]

Hi Ellie,

Have been following your posts regularly too, and my thoughts are with you and Brian.

Millyjoxx