rortmanns
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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.
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
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
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.
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 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
