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Painful ascites - any advice from fellow liver metsers?

35 REPLIES 35
Marirose
Member

Re: Painful ascites - any advice from fellow liver metsers?

Hi Jacksy

Fab news about your mets and good luck with your scan result will keep my fingers crossed for you.

It is awful news about Julia (cress) she will be missed we became friends on the forum.

 

I am not a liver person but I do read your posts as I have a friend who is suffering quite badly with hers and I try to keep up with your treatments and progress to share with her because she is not on the forum.

 

Love and hugs to you all xxx

Jacksy
Member

Re: Painful ascites - any advice from fellow liver metsers?

Hi ladies,

so sad to hear about Cress. It's always a big gulp moment for us all when we lose someone. I hope her family are holding together and getting good support from friends and loved ones.

i don't know about you but i find it really hard to even begin to imagine my family going on without me.

fortunately I had good news from my scan. 3 rounds of Kadcyla and the peritoneal mets are defo shrinking. Brilliant news. Slightly more worrying is they've sent me for a brain scan as I've been having headaches & dizziness since starting the treatment. I had the scan yesterday, results in 10 days. Also, My ovaries haven't changed at all. The docs are all happy saying its therefore not Bc mets. I'm saying hang on a minute, aren't you even interested to find out why they're enlarged than?! Apparently not. 

Hey ho, gotta trust them I suppose....

love to everyone. Glad you're on something gentler Sharon, just enjoy it being easier for a while

Jx

scratch
Member

Re: Painful ascites - any advice from fellow liver metsers?

Hi Carolyn.no I cant have Herceptin..so have just got examestene.hope it works.iv already had tamoxifen and letrozole as hormones...heres hoping..had bone juice today I have no probs with that one.x😻 take care sharonx
Carolyn52
Member

Re: Painful ascites - any advice from fellow liver metsers?

Hiya Sharon.
Well at least the hormone tablet will b a bit better for your body to tolerate as u have been having the big guns chemo and must feel battered.
Have u got the option of herceptin next or like me ..the wrong sort of cancer for it.
Yes I was shocked at the loss of cress too ..although she had certainly been through the mill with the fluid build up ...may she rip and be free of all the pain now.
Although I'm only a six months newbie here I feel very sad now.
Hugs xx
scratch
Member

Re: Painful ascites - any advice from fellow liver metsers?

Hi I saw oncologist last Tuesday and she gave me exemastine hormone tablets.just hope they work.tumours shrunk a bit .but still there..have been up today for demusab..feel sad that got back from hospital to hear about cress..*♡*
Carolyn52
Member

Re: Painful ascites - any advice from fellow liver metsers?

Hiya Sharon.
With the sad news of CRESS ..forgot to ask how you got on today with oncologist and treatment plans.
Hugs
Xx
scratch
Member

Re: Painful ascites - any advice from fellow liver metsers?

Love to your family,❤
scratch
Member

Re: Painful ascites - any advice from fellow liver metsers?

Hi may you rest in peace julia..and live to your family❤ sharon
Marirose
Member

Re: Painful ascites - any advice from fellow liver metsers?

Oh no Cress another of my dear friends may she rest in peace and condolences to her family may she now fly high with out pain xxx

Carolyn52
Member

Re: Painful ascites - any advice from fellow liver metsers?

Hello to all.

I'm not sure if this is the correct way to do things but I thought I would post a note here to say we have had the terrible news that CRESS has sadly passed away. She was posting on this thread recently and i thpught it a tribute to reach her fellow liver Mets friends .
It's always hard to announce sad news and we will all miss this kind and supportive lady who fought so hard to survive this terrible illness.
Hugs xx
scratch
Member

Re: Painful ascites - any advice from fellow liver metsers?

Hibjacksy I'm er .i have finished docetaxol..had scan last week.get decisions on Tuesday from oncologist..so waiting at moment.xsharon
Jacksy
Member

Re: Painful ascites - any advice from fellow liver metsers?

Hi Sharon,

yes, as it had been a long time and mets were in a new area, they wanted to check it was a) BC secondaries (and not a new ovarian primary for example) and b) that it was still HER2 positive, as they wanted to use Kadcyla which would be no use if the little buggers had mutated and were no longer HER2+. I can't believe they are clever enough to mutate and get round the treatments. At least it takes a long time for that to happen.

hope you're doing okay

Jx

scratch
Member

Re: Painful ascites - any advice from fellow liver metsers?

Yes jacksy I have a phobia of needles now..i could never have acupuncture because of that..i panic if they attempt my veins and fail..i go all clammy and want to run out .sharon
scratch
Member

Re: Painful ascites - any advice from fellow liver metsers?

Jacksy did you have peritoneal Mets for status..im thinking if all goes ok at my oncologist appt Tues to ask for liver Mets biopsy also to double check what my peritoneal Mets were in December..as oncologist wasn't sure if I had ovarian Mets I know they came back as breast cancer but dont know status..im just praying there is more treatment available for me..sharon.x the drain procedure uncomfortable but such a relief when I had it..also hoping praying that doesn't come back as now finished docetaxol two weeks ago..take care Sharon.x
Jacksy
Member

Re: Painful ascites - any advice from fellow liver metsers?

Hi girls,

just wanted to say hi. Poor Julia, that was a long stay in hosp, it must have driven you nuts!

ive had liver mets on & off for 9 years (chemo, RFA x3 then liver resection). Now have peritoneal & ovarian mets so I've been reading your experiences with interest. I've had 3 cycles of Kadcyla and had CT scan yesterday to see if it's working - results on Monday. I'm in a lot of discomfort right where the tumours are so I'm really hoping this is a good sign!

when I had my biopsy I was next to a lady having drainage for ascites so I was thinking 'this could be me anytime soon'  I have to say the biopsy was pretty uncomfortable, so I hope a drain is less so. I do think I've become less tolerant to pain as time goes on though... I used to be an optimist, sigh, now I cringe a little before every needle/procedure.

all the best to you all, and hope Julia's enjoying lots of delicious treats on her weight-gain diet!

Jx

scratch
Member

Re: Painful ascites - any advice from fellow liver metsers?

Hi cress hope your doing better.sharon.,❤
Tournesol
Member

Re: Painful ascites - any advice from fellow liver metsers?

Hi Julia,

 

Very glad to see you posting but really sorry you've had such a hard time. Hope things improve now; take care.

 

Tournesol x

Waffles
Member

Re: Painful ascites - any advice from fellow liver metsers?

Hi Julia,
It's so good to see you back on the forum again. You've really been through the mill over the last few weeks but it certainly appears they are sorting the fluid out. Hopefully, you won't have to put up with the drain for too long. Sounds like you've got some serious eating to do now!
Best wishes xxx

scratch
Member

Re: Painful ascites - any advice from fellow liver metsers?

Hi Julia .om so glad to hear from you...yes seems to affect leg muscles..you now need yo build yourself up..so far iv had no recurrence of fluid.oncologist thinks chemo controlling it.but had last docetaxol yesterday then scan and oncologist again for next decisions..you were certainly in there a long time..hope your stomach back to normality nearly...il update you as well..get rest.best wishes Sharon.*♡*
Cress
Member

Re: Painful ascites - any advice from fellow liver metsers?

Hi Sharon,

 

Got home on Good Friday after a 20 day stay in hospital. Got drained a huge amount and then had a Pleurex drain put in. The District Nurse comes around to drain it every few days. Last week she got 850ml but today only 35ml. Hopefully, it will taper off to nothing and I can have it removed in a few months. I was bed bound for 16 days and have lost normal use of my legs at the moment. Saw my onc yesterday and bloods are stable, so he has put me on Tamoxifen for a month to give me a break from the horrid Abraxane and build myself up. All a bit weird as I walked into hospital on the 6th and was still driving up to then. Weigh 48kg now so have lots of eating to do... I will have bloods every week and will see my onc again in 3 weeks, so will let you know how I get on.  Thanks again for your help.

 

Best wishes,

 

Julia x 

 

scratch
Member

Re: Painful ascites - any advice from fellow liver metsers?

Cress..how are you after draining..sharon.❤
scratch
Member

Re: Painful ascites - any advice from fellow liver metsers?

Hi Julia.hope youv had drain done.hope your home or nearly home from hospital.sharon.x
scratch
Member

Re: Painful ascites - any advice from fellow liver metsers?

Hi Julia yes I had pain.could only shuffle along.and sat down alltime...if I was you I would go today.its such a horrible feeling..I may have had progression.because I had peritoneal Mets and bone Mets.when I had swelling I had ct and it showed liver Mets too...so sounds like you need it drained asap.i dont mind how much you ask me or how many times.....love Sharon.xx.
Cress
Member

Re: Painful ascites - any advice from fellow liver metsers?

Hello Scratch,

 

Sorry to be a pest, but what were your symptons just before you were drained? I'm now in great pain and I don't know whether to go to hospital today. As much as I don't want to go on Mother's Day, I think that I need something stronger than Naproxen.

 

I'm very wobbly on my legs and getting lots of pain in the ribs, as the fluid is now crowding all my organs.

Also, one last question and then I'll shut up - did your mets get worse around the time of your ascites? All that I've read about malignant ascites indicates that it is a signal of progression.

 

Once again, thanks for your help, as it seems that there aren't many liver mets people active on the boards at the moment.

 

Best wishes,

 

Julia x

 

 

scratch
Member

Re: Painful ascites - any advice from fellow liver metsers?

Cress..i hate hospitals too😁 they scan stomach.then numb it .then put a very thin tube in .the other end drains into a bag.they let you out when it stops draining..which I suppose depend on how much fluid..they measure the amount of fluid...you will feel better .xx
Cress
Member

Re: Painful ascites - any advice from fellow liver metsers?

Hi Sharon,

 

Thanks for all the info. Wow... a total of 11 litres across your two visits! I'm quite slim too (about 54kg) and I'm now 58. So painful I can barely sit up because stomach is in the way and rock hard. I can hardly wait until Wed. Had my 3rd Abraxane yesterday and was given some new meds - Zarzio (Filgastim) injections that I have to give myself for 8 days starting tomorrow. Dreading stabbing myself in huge sore abdomen.

Hope they get it on first go, as I hate hospital stays.

 

Thanks for all your help.

 

Best wishes,

 

Julia x 

 

 

 

scratch
Member

Re: Painful ascites - any advice from fellow liver metsers?

Cress.hope you understand my garbling..take care.xx
scratch
Member

Re: Painful ascites - any advice from fellow liver metsers?

Hi I was in Portugal in November.my stomach shot up very quickly.cdnt eat or drink much..or sleep..or didn't want to swim....as soon as we landed back I went a.e. They told me constipated..and gave me enama..i hoped but kinda knew it cdnt just be that.couple days later was oncologist apt.she knew straight away as I'm very slim.so looked pregnant..had to go back to a e.had ct ..hence docetaxol every three weeks.they drained it was six litres fluid.i went a stone lighter.came him within two weeks had infection and swelling ..hosp again drained another five litres...was in hospital bout five days each time.op didn't hurt .and such a relief when fluid drains out..as for docetaxol I had three then a ct .the cancer hasn't shrunk but is definitely stopping the horrid fluid..so oncologist wants me to finish course..hopefully may get some shrinkage at the end ct....xxx
scratch
Member

Re: Painful ascites - any advice from fellow liver metsers?

Hu jultz..iv had four now .number 5 Tuesday.have been out quite lot.couple rough days.by the evening I just seem burnt out of energy....my daughter gave birth to babygirl last Thursday and she lives here.so been wrapped up in this beautiful little one.hope your getting on ok at work..have you done your six docetaxol now? Take care.sharonx
Cress
Member

Re: Painful ascites - any advice from fellow liver metsers?

Hi Sharon,

 

Do you think the overkill of antibiotics could have brought it on? I'm now booked in for ultrasound and drainage next Wed. I've been having a lot of pain yesterday and today and hope that I can wait that long. Did you get sore ribs as well? I'm supposed to be having the 3rd Abraxane tomorrow and don't know if I can cope with that much spinning into the orbit!

 

Yes, I'm as big as I was when I had my daughter 16 yrs ago! Did your swelling come on really quickly? I've put on 8lbs in 5 days and am wearing my jeans under my stomach... next thing you know, I'll be showing a builders bum!

 

My sister was drained twice and she has assured me that it is fairly painless.

 

Please let us know about your success with Docetaxel.

 

Best wishes,

 

Julia x

julzd
Member

Re: Painful ascites - any advice from fellow liver metsers?

Hi Sharon how you feeling ? How many docetaxcol have you left now ? X x

scratch
Member

Re: Painful ascites - any advice from fellow liver metsers?

Cress just a reaction to antibiotics ?sharonx
scratch
Member

Re: Painful ascites - any advice from fellow liver metsers?

Hi cress I have bone Mets.peritoneal Mets and liver Mets..I had swelling like this in November.cdnt eat.not weeing much..i had stomach drained and two weeks later swelled up again.had it drained again.and am having docetaxol which is keeping swelling away.dont know if your the same..i felt like nine months pregnant...i think you need to see Dr or oncologist.take care .sharon.x
Carolyn52
Member

Re: Painful ascites - any advice from fellow liver metsers?

Hiya Julie . Sorry have no answers but suggest the live chat at 8.30pm tonight on this forum .
Hugs though xxx
Waffles
Member

Re: Painful ascites - any advice from fellow liver metsers?

Hi Julia
I'm really sorry to hear you aren't feeling good at the moment. I'm afraid I can't help with your question but I'd like to send you a big (((hug))) and my wishes that you feel a bit better soon. xxx
Cress
Member

Painful ascites - any advice from fellow liver metsers?

I was in hospital from Saturday to Monday with neutropenia and was treated for suspected sepsis (doubtful). (No, I wasn't doing mystery shopping for Jeremy Hunt!). I was given 5 x bags of IV antibotics and huge 1l. bags of rehydration fluid. When I went in, I was urinating normally and my abdomen looked reasonably flat. I emerged on Monday only able to wee an eggcup full and with a massively bloated stomach.  

 

I have been in pain and can't really eat... generally miserable.  

 

Anyone experience similar? Help!

 

Best,

 

Julia x