A forum for advanced pancreatic cancer issues

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

Re: MY MUM

Postby Nardobd » Wed Jan 25, 2012 7:41 pm

Hi

Ted didn't want to fly when first diagnosed but I eventually persuaded him and we got away for a short break to France this year. He found it perfectly ok, but we're only talking about a short flight.

Rather than a one-night stoppover en route have you thought about doing a 2 or 3 night stop somewhere. That would give Mum more time to recover and she will be more able to cope...you know what it's like the first night in a strange bed - sleep never comes easily.

Keep us updated.

Love
Nicki

ma2houra
Posts: 22
Joined: Mon Dec 12, 2011 11:50 am

Re: MY MUM

Postby ma2houra » Thu Mar 15, 2012 1:40 pm

Been a while,

mums pain cries can be heard in another country and her nausea bouts reflect being swallowed by the ocean :(

symptoms were NOT being controlled well at all by her oncologist or pall care team.
In sheer desperation and frustration we checked her into a clinic in Germany to try some alternative treatments like hyperthermia with low dose chemo and a range of other therapies.

After day 2 she could leave her bed and eat a full meal .. after week 2 she was her old self again, if nothing buy control her symptoms effectively then it was worth every cent.

Seeing her turn around gave us all hope..she was feeling SO much better looked like she was back to her old self!

We (her family) dared to think this treatment was slowly curiing her. Holding our breath and with butterflies in our tummy we anticipated the result of her tumour markers.

On diagnosis: 130
On arrival at clinic (3 months later) : 550
Six weeks later (still at clinic): 1400!!!!!!!!!

1400!! almost a threefold increase. WOW how could that be. she's never looked or felt better since learning she had PC. We feel so deflated.

I just need to vent, sorry for going on and not making much sense. Whenever we take one step forward we're hit with ten steps back. I should just accept my 55yr old mum is going to die but I cant.

PCUK Nurse Jeni
Posts: 1063
Joined: Mon Jun 14, 2010 1:30 pm

Re: MY MUM

Postby PCUK Nurse Jeni » Thu Mar 15, 2012 4:25 pm

Hi Ma2houra,

It is really good news that your mum has begun to feel better. This is amazing.

In this job, we treat the patient, not just the scans, blood tests etc...

If she feels better, then this is more important than a blood value, especially for your mum.

I think it is good to hold onto these positives, and not solely think about the results. Sure, it is disappointing, and it is understandable that you feel flat about it, but if your mum is well, and feeling better, then grab it with both hands.

Hope she continues to make progress. Sounds like Germany was great. Would be interesting to hear what they did, exactly.

Kind regards,

Jeni.

louiepc
Posts: 238
Joined: Wed Aug 10, 2011 10:38 pm

Re: MY MUM

Postby louiepc » Fri Mar 16, 2012 12:15 pm

Hi

I don't really know much about tumour markers, as mum never had this.

What I would say, is that if your mum is feeling better - fantastic, things with this illness take a downwards turn all too quick. Hold on to all the positive aspects, like mum feeling good, these are the times that will get you through the hard times.

Make stacks of special memories, and know that you have done everything in your power to help your mum, lots of love and best wishes.

louie xxx

laura
Posts: 385
Joined: Thu Jul 01, 2010 1:53 pm

Re: MY MUM

Postby laura » Fri Mar 16, 2012 10:28 pm

hi there, what a wonderful result for you all,try to judge how mum is by how you see her, though they scan bri every 12 weeks, the oncology team are more interested in how hes been, how he feels etc. they say the scan doesnt give them this information.

try and take jeni's comments on board, am sure you will, you could use up precious time and energy worrying about something you cannot change, i agree with louie, enjoy every precious moment that mums feeling good.

good luck laura x

ma2houra
Posts: 22
Joined: Mon Dec 12, 2011 11:50 am

Re: MY MUM

Postby ma2houra » Fri May 04, 2012 12:53 pm

Hi all,

SOrry havent been here in a while. hope all is well or at least as best as can be.
I have a question (or two)

After poor symptom control for mum's PC we all thought she was nearing end stage and didn't have long to go..however after changing onc. she is now feeing heaps better..almost like her old self.

Her pain, nausea and depression are under control, by that I mean almost non existent.
Here is the question...

How can she be feeling and looking sooooo good yet have her tumour markers spike from 530 to 1400 to 2500!!!!

So that must mean she is ONLY doing well to control symptoms correct? Not her cancer getting smaller?

She is on the Folfox regeime and also hyperthermia local and whole body.
Anyone have any information about this?

How have cancer markers been with you/your loved ones?
How high do they usually go before its the "end"
On diagnosis mum's markers were 130 and she had/has mets to liver and lungs.

all info appreciated. thank you :)

PCUK Nurse Jeni
Posts: 1063
Joined: Mon Jun 14, 2010 1:30 pm

Re: MY MUM

Postby PCUK Nurse Jeni » Tue May 08, 2012 2:11 pm

Hi Ma2houra,

Great news to hear that your mum is doing well! What a turnaround, and so much better for her.

Tumour markers are not always indicative of what is going on, although can be good indicators of what is happening. However, they can't and should not be taken as a "stand alone" result, and should be looked at in combination with scans, and how the person is in themselves. In medical practice, how the person feels is always an indicator of how things are going. So, even if other tests are saying one thing, the concrete evidence is how the person sat in front of you is, and you find this out by clinical examination and careful questioning as to how the symptoms are. In your mum's case, she is a lot better. Also, ca 19.9 levels can sometimes fluctuate ie: they can go up, then come down, then go up again, so they are not totally reliable. In some patients, the tumour markers follow a direct pattern ie: are high, then drop when on chemo, then maybe rise when the person feels worse or the disease starts to grow again. As such, these can tell us that for that particular person, the tumour markers are fairly reliable to indicate tumour activity again. Although her markers are fairly high, they can go a lot higher. The highest I have seen was 65,000. There is no set pattern for how high it gets before "the end", as you put it.
I think to really focus on the fact that your mum is doing so well and the fact that her symptoms are really settled is the way forward. This is the best news you could hope for, and if her quality of life is better, then this is very positive.

Here is a link to Hyperthermia http://bit.ly/IFlt6j , which explains it well. It is given in combination with other treatments ie: radiotherapy or chemotherapy. It is intense heat treatment which dilates the blood vessels around the tumour, causing red blood cells to spread into the tumour. These are rich in haemoglobin, which carries oxygen. The chemo then reacts to the high levels of oxygen in the tumour and causes tumour death. Folfox is combination chemo treatment used for secondary pancreatic cancer sometimes.

I hope your mum continues to do well.

Jeni.

ma2houra
Posts: 22
Joined: Mon Dec 12, 2011 11:50 am

Re: MY MUM

Postby ma2houra » Tue Jul 17, 2012 1:47 pm

Hello all,

Sorry i havent been here in a long time, i have been quietly reading all the posts and catching up on every ones stories.

Im heartbroken reading about all the suffering and pain as i know all too well how it feels. Cried for days over Juliana, it saddens me to think of her family struggling without her and for all those who lost loved ones to PC.

Since i was last here lots happened...we flew mum to Germany in a desperate effort to cling to hope. She had alternative and chemo treatment for about 5 months there. Us kids took turns staying with her in the clinic so she was never alone, mum did SO well there, she was thriving although her cancer got worse.

Its spread to her abdomen now and shes struggling with ascites :(
Twice a week she goes into hospital and has around 4ltr drained.

I know this is not a good sign..the end is nearing and we are all emotionally spent, i wish i knew when.
Mum is tired of being tired and sick of being sick, shes always going on about wishing she would die quickly. Shes majorly depressed i know and all i can do i pat her arm and cry in the other room.

Ranting on and on i should stop now
Thank you all for being such a great support.
I pray for mum and all of you suffering from this cancer,
We wait patiently for better days

DRAD3
Posts: 435
Joined: Wed Mar 16, 2011 11:22 am

Re: MY MUM

Postby DRAD3 » Tue Jul 17, 2012 7:57 pm

So sorry to hear that your mum is not doing well. She must be so tired of fighting and you must be exhausted helping her in her battle. When I first came on the forum when my husband, Gary, was first diagnosed, it was so helpful. I suddenly felt part of a very caring family where everyone understood everything I ever said or thought. It has been quite a comfort, even at times, like you when I have just read how others are getting on. I remember how much hope Ellie's Brian and Nikki's Ted gave me and how devastated I was when they lost their battle - I cried for days for them too. As much for myself as for them because it all pointed to the hopelessness of it all. I'm not being much help, am I? I just understand the point you seem to be at where you know it is hopeless and I am so sorry because I remember how awful that is and how brave you need to continue to be. I wish you lots of strength - know that you are not alone and your mum will be OK. I like to think that just as we are all linked together on the forum trying to help one another, our loved ones who have passed are waiting somewhere close by to help your mum and others like her. Take care.
Love to you and your family
Deb
x

charney
Posts: 74
Joined: Wed Mar 14, 2012 2:29 pm

Re: MY MUM

Postby charney » Wed Jul 18, 2012 9:53 am

I am so sorry to hear about your mum, this truly is an emotional roller coaster of a disease. I lost both my parents to Cancer, although not to PC and the stress of watching a loved one suffer is mindblowing. My Mother in Law has PC and at the moment we are very lucky in that she is coping quite well and Oramorph and diclofenic are taking the back pain away. She too is tired of being sick and tired of not being able to do the things
she used to and gets very low sometimes. I really feel for you and my thoughts go out to
you and your family.
Take carexx
cheryl

Midnight
Posts: 2
Joined: Thu Jul 05, 2012 5:31 pm

Re: MY MUM

Postby Midnight » Sat Jul 21, 2012 6:19 pm

ma2houra wrote :
> Thanks Nikki & CFF,
>
> I really admire your courage and strength. This forum is the best place to
> connect with others going through the same thing, it's comforting to know
> someone else out there understands what you're going through.
>
> Can I please ask...nausea? Mum's nausea is soo bad most days she cant get
> out of bed. Has anyone experienced this? Why might this be the case? What
> has helped?
> Also fatigue. She feels soo weak that bathing is an effort, is this likely
> to continue or might it get better?
>
> Thank you for all your lovely comments and thoughts.
> Till next time...goodnight

To help me with nausea after trying various tablets and capsuls agreed with sugestion from my GP to have a syringe driver put in plus injections of morphine 2-3 times a day and tried various medications eventually 10days later am now getting relief from nausea, reflux, and actual vomiting I had some soup today and a chocolate both stayed down took 2creon 15mins before snd 5ml Oramorph after the food

Midnight
Posts: 2
Joined: Thu Jul 05, 2012 5:31 pm

Re: MY MUM

Postby Midnight » Sat Jul 21, 2012 6:23 pm

remembering your Mum yourself and family in my prayers xx

ma2houra
Posts: 22
Joined: Mon Dec 12, 2011 11:50 am

Re: MY MUM

Postby ma2houra » Tue Jul 24, 2012 11:20 am

thank you all for your loving kindness and heartfelt words,

i never knew how much this forum helps us emotionally until I read some of the posts and struggles of others.

I close the laptop with a sense of security and a feeling of calmness...
is it because I connect with what others are going through?
I know the feeling of being afraid and sad and angry at life and at cancer.
All of the above.

Its out of trial that generosity peaks, and I am certain that this forum has brought together all those out there who suffer to give despite being in need. My family and I are really greatfull for having this provision.

My mums not doing too well today, she had another fluid drain (ascites) and the doctor was a little heavy handed and hurt her. Its soo sad to see her like this. She just sits in bed with all the sorrow in the world painted on her face, tired of living and not yet ready to let go.

When her body is in pain pills and drugs help ease that but when her heart is paining no amount of morphine seems to help and its this that I fear most. I keep saying to myself over and over that as long as she still has that spark in her eye's I can cope with all that pancreatic cancer dishes out but once that spark starts to fade we all sort of slow down and ease up to reflect on reality.

I wish I can have one day with my mum before cancer struck...I would tell her how much she means to me, I would hug her and never let her go, I would take her out into the sunshine and we would laugh together. Just one day without disease...

All those words are said daily now and hugs are given just as hard but its different, I dont know why or how to explain, it just is. Its like cancer built a wall between mum and me and now matter how close i get i cant seem to break through.

Pain and discomfort, fatigue and nausea seem to dominate her mind and heart lately, she can hear what Im saying but no one's really home, its sad and on occasion I stand back and watch her sleeping and feel like I really miss her already although she is right there. I miss the person she was. I miss having her to lean on, talk to, draw strenght from and go to for comfort. I miss my mum.

I know she doesn't have long to go. Weeks or a few months if we're lucky. I suppose it feels like she'll be around forever. Its mum, mum is always there, ready to help out and ready to love. It's selfish I know but I want her around even if she's sick. It's hard to let go.

If anyone can find it in their heart to tell me how they went in the last few weeks before their loved one passed on I would really love to read your story. I don't know if what I feel is normal, am I being selfish? and what can I expect close to the end? Not knowing is really frighting.

thanks for listening to me ramble

xo

NICOLA
Posts: 41
Joined: Tue Apr 10, 2012 10:09 pm

Re: MY MUM

Postby NICOLA » Thu Jul 26, 2012 9:21 pm

Hi ma2houra

Been reading your posts and you really have been through hell, your poor poor mum, my mum too is nearing the end, I think from reading loads of posts on here every story is different. My mum has said she wants to go into the local hospice towards the end so they can support her and give her what she needs, but from past experience things dont go to plan. I just hope and pray that our mums slip away peacefully with us around and no pain (god I cant believe Im typing these words) I still cant believe my mums not going to be here. Taking it day by day and making memories, Love Nicola x

ma2houra
Posts: 22
Joined: Mon Dec 12, 2011 11:50 am

Re: MY MUM

Postby ma2houra » Wed Aug 01, 2012 8:10 am

palliative care doctor just left.
He told us mum's cancer has spread to her tummy & intestines and her liver is the size of a basketball.

mum took it like a trooper

we all feel flat

life sux