Its with much sadness that I need to report that my partner, Fiona passed away yesterday morning by my side.  Fiona held hope to the end but as we all know on the forum - this terrible disease gets you in the end.

Fiona made it to our 5th anniversary, I believe that is what she aimed for. 

Like so many here, she was just too young at 47.

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(8 replies, posted in General Discussion)

Fiona, my partner, has bad ascites - 4.6-7.5 L removed weekly (she is 40Kg).  She found it hard to eat when full and the procedure hurt little unless the tube hurts on extraction.  She is able to eat well after the draining because there is no pressure on her stomach.  What has occured recently is that she gets a lot of pain after draining as the organs resettle themselves and that take a couple of days.  It all is going to depend on how often it fills.

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(46 replies, posted in Blogs)

I'm so, so sorry.  Jeff was a huge inspiration to me even though I never met him. He was my example to my partner on how this disease can be won over, perhaps one day with the courage of people like Jeff this disease will be defeated.

My best regards

Ralf

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(1 replies, posted in General Discussion)

Hi,

Not posted in a while.  Recently Fiona has undergone some strange changes with her ascites.  During the night her swollen belly goes down a significant amount - not sure if we can measure effect somehow but its a definite trend.  During the day she fills a bit (getting bigger each day) but at night it reduces - not all the way but a lot.

The amount she is having drained has steadily reduced.  We were regularly getting 7.6L done each 8-9 days.  We then went to every 7 days to reduce the volume (she is only 40Kg in weight).  Since increasing draining frequency we have gone from 6.5 L every 7 days to 5.5L and 4.7L the last 2 times. 

The last 2 times were very painful for her - they are doing the tap from the front of the tummy instead of the side and it could be that or maybe something to do with the reduced volume.

She wont take pain meds, any ideas?

Regards

Ralf

Well we didnt get the chemo - blood count too low.  Did the CT scan but not got results yet.  Since we didnt get chemo we had time to get drained.  This time we were guided in under ultrasound again and they got 6.7L out of her - pretty much normal so I expect her distention was caused by fluid and they botched the drain last time.

Fiona is not keen to get latest CT results - afraid of bad news but we will hear in the next week or so.

Thankyou so much for all your kind thoughts.

Ralf

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(41 replies, posted in General Discussion)

Hi Marion,

You have captured the essence of how I feel with your post on chemotherapy in a way I havent been able.  My partner chose an alternative path initially against the advice of 3 different oncologists, I begged her to try chemo as well.  She was warned not to expect favourable outcomes after she deteriorates.  Three months were spent on an alternative program, one that promised cure, in that time she wasted away and eventually the ascites started, then they promised they could fix that as well.

We had a scan at that time and it should greater soft tissue and then we sought out chemo.   We have only had 5 doses and I'm not sure its doing any good.  I feel I've pushed her down this road and while we have had positive results from the change in nutritionist at the same hospital I just dont think the chemo is making a lot of difference although time will tell.

I am so scared that I have got her into a treatment that may cause her some harm.

I find myself dwelling on not pushing her when she was still so healthy.  Originally the oncologists were confident that they could give her 2 yrs and up to 5.  Now they are saying 'we'll continue if you want but you need to decide if you feel its helping, its rational not to have it'.

I feel I have really let her down.

Yes, recently she has added a diuretic by another oncologist but it seems to dehydrate her and we have reduced the dose on the recommendation of her main oncologist.  He originally didnt recommend diuretics although we asked about them.  All the research I have done suggests that they are ineffective in most cases.  We have not been using them long enough to tell for sure but they seem to have slowed accumulation of ascites.

She was using 2 oncologists because her family is in a different state and she stayed with them for a fortnight to get away a bit, during that time she needed to be drained twice, once on arrival and then just before I drove her back, so she needed an oncologist to OK that.

Thankyou for all your support.

We are hoping that the issue is just loculated fluid that cant be seen on the ultrasound for some reason.  Hopefully the CT scan will provide positive news on Tuesday. 

Fiona is not looking forward to the CT - she is scared of what it will reveal.  It will be our first CT since starting the Gemzar - she has had 5 doses.

Regards

Ralf

We are due for the scan next Tues and its the first appointment that we can get.  We have chemo on the same day so it will be a tough day - especially as chemo is at 8:30am and the CT at 3:30pm - going to try to get her in early by just showing up.  Its in the same building so we have nothing to lose.

Fiona is feeling sick and she is quite weak.   She doesnt feel that the doctors hold out a lot of hope and she thinks the Doctors dont think the chemo is working.  I didnt hear that and I think they have a bias toward not using it because they have no direct evidence that Gemzar is effective for this cancer.  I think the negativity stems from the hospital funding the drug as the government doesnt fund it for this type of cancer in Australia.  Not sure what this stuff costs but I expect its very costly.

I'm hoping Fiona's distention is loculated fluid that they couldnt see in the ultrasound.  Fiona is not keen on he CT as she is worried what else it will show.

Fiona needs me to be strong so I need to keep emotions in check, she needs the rock to lean on.  We live in a rural area and commute for treatment so there are not many people to vent with but this forum is great help and its good to be able to talk to people who just understand.

Many thanks to you all

Ralf

Hi,

Fiona was drained the other day but they only got 2.75 L in place of the 'normal' 7.5L.  They took her back to radiology where they believe they saw only another 0.5L on the monitor.  Fiona is still very distended and until we can get a CT scan they can offer no reason why.  Does anyone have an experience similar to share so we dont worry too much over the week until the CT?

Our worst fear is a build up of tumour but she has only had a very small tumour, could it have grown that much?

I'm so worried and struggle not to show it.

Thanks

Ralf

My partner has severe ascites and gets drained every 7-9 days at the moment, typically they take 7.5L from her tiny body - she only weighs 48Kg with 7.5L of fluid in her.

In her case the ascites is caused by cancer cells on her stomach lining.  Apparently we produce this fluid in small amounts to allow the internal organs to move freely about - slide over one another.  In the case of cancer cells that are on the stomach lining this irritation causes the body to respond as though more fluid is required, hence more is produced.  Normally more fluid would ease any irritation caused by the lack of fluid but in the case of cancer the irritation continues as does the fluid production.

The worst thing is that once the fluid is removed it seems to build up relatively quickly.  Fiona was only kept in hospital once, the first time a large amount was taken - this caused her to have severe referred pain in her shoulder caused by relief of pressure from the ascites on the diaphram.  They kept her in to ease the pain. Since that time it has been a relatively simple procedure but gives her much relief.

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(11 replies, posted in Grief Management)

Happy birthday Pam.  While its not about birthdays for me I do know exactly how you feel, the loss of the person seems to occur in so many ways long before they are finally taken.  I look forward to every day with my partner even when she is demanding and unreasonable because I know that there is a chance that one day I may so much miss those demands, the short temper and unreasonbleness.  I hope that I never lose her but if I do I will cherish even the hard time long after.

My partner is not a big believer in chemo and she is inoperable and the cancer is positioned such that radiotherapy is more damaging and no solution either.  She is stage IV.

We have tried one alternative treatment and the result was just massive weight loss and no improvement, in fact the tumour has grown and she is weaker than ever.  She is trying a second.

We entered chemo 6 weeks ago and had a review session this week, they really dont offer much hope.  Basically they are calling the chemo palliative care that will improve the time she has left and will leave it to her to decide if it is helping her feel better.  We have now seen 3 oncologists that say the same thing - Gemcitabine is all they can offer due to her situation. 

Fiona is not jaundice and not itchy - her only symptons are a bit of pain, bad ascites and weight loss.

What I am really looking for here is:

Are there any alternative treatments that are know to make a difference?
Anyone that has tried a treatment and found it to help them?
Anyone tried Gerson and had success?
Anyone tried probiotics and had it work (my partner is on Mannatech products at the moment)?

The trouble I have with alternative treatments is that they are all care and no responsibility - they promise yep we can fix you but when they dont they've just built up false hopes that get shattered.  So I'm reaching out here - as I'm not a big believer I'm looking for some info to help me help my beautiful lady who does believe.

My partner is getting taps ever more frequently.   Its down to every 9 days or so now and the amount is up to 9L , she only weighs 42Kg after the tap.

What actually happens if you dont get tapped - does it stop accumulating?

Regards

Ralf

Hi Janet,

My partner is actually in Kurri Kurri at the moment - near Newcastle where her parents live.  I pick her up on Saturday and we are driving back to Melbourne.  Fiona plans to get drained on thursday and hoipes that we can go back via the coast road which probably takes us right past you.

Regards

Ralf

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(13 replies, posted in Introductions!)

Hi Marc,

Where are you located in Oz, we are in Kyneton (North of Melbourne).  My partner was diagnosed in August 08 and she is inoperable.  From the sound of your treatment approach by the Prof you may be having treatment at Peter Mac in Melbourne.

Hope everything is going OK.

Regards

Ralf

Hi,

As my partner becomes weaker she is in need of increasing levels of care.  My problem is I dont know what I need to do for her?  What sort of help will she need?  What should I do around the house that you wouldnt normally do or do to such an extent?

My biggest concern is cleanliness - is a chemo affected immune system vulnerable to infection through hygiene?   Should I be doing more to keep the bathroom areas clean or is normal cleaning sufficient?  Do I need to be careful with the dogs and cat?  Should you shower more often?

I just dont know what I should do around here to ensure my partners best chances.

Many thanks

Ralf

Hi everyone,

Fiona was diagnosed with CC in August 08, she didn