Devastated with scan results

[Katsmum]

So I had a wonderful holiday in Gibraltar last month and felt pretty good but came back to a routine follow up appointment where my Oncologist thought we should have a scan. The results are pretty dire with half my liver involved and one kidney has ballooned due to countless other lymph nodes and sites all over the place. Apparently the ureter is being squashed causing a back up so it was a choice of carboplatin on its own or with gemcitabine. I have gone for the single agent as gem can be a bit harsh on liver and kidneys but as this is third line I don’t know whether I am going to respond to the platinum or not. The hospital has been really quick and I have my first session on Tuesday so keep everything crossed for me that it can at least knock the beast back a little and give me a bit more time. I have felt very down since learning all this and have tummy troubles that may be just the stress of it all. Sorry for hopeless post but wondering if anyone else has had a better than expected response to third line? Hoping you are all keeping as well as possible out there xx

[Holliday]

Get better make sure you get right treatment always share your concerns and you can help others good luck send me message when you want too. I need learning about health condition and others didnt understand carboplatin and gemcitabine explain.ready listen why the kidney got too big. Lymph nodes liver take care

[Holliday]

Dont forget you not on your own talk me and others left message earlier let me know you reieved it

[BeeWild]

Sorry you had bad news and are facing treatment again x I’m just on second line so can’t offer you anything about 3rd line but just wanted to let you know I’ll be thinking of you and keeping everything crossed you can kick the beasts ass into touch XX

Good luck and hugs

Bev x

[Katsmum in reply to BeeWild]

Thanks Bev, I am just glad to be getting on with treatment quickly! Xx

[January-2016-UK]

Hope the carbo does the trick for you. It's amazing that so much was going on and yet you were unaware. You're probably right in guessing tummy troubles are down to stress.

Good luck for Tuesday. Were you told how many sessions?

[Katsmum in reply to January-2016-UK]

Well probably six but will get another scan after three to see if I am still responding to platinum. I hope so or otherwise I will have to have a stent to relieve the pressure on the kidney. Strangely enough my kidney function is still fine!! Xx

[Cropcrop]

I’m so sorry you’ve had this rubbish news, but I guess it’s good they’re starting treatment quickly and I suppose the fact you’ve had a nice holiday unspoiled by bad news can only muster the soul a little.

I hope this treatment does it’s job and you are able to kick the little blighters well and truly into touch.

We’re all here for you, sending lots of love and big hugs ❤️Xx Jane

[Katsmum in reply to Cropcrop]

Thanks Jane - yes I am glad I had my holiday but to be fair I could now tell you where every loo in Gibraltar is located lol! Xxx

[harpist_UK]

So sorry about your news. Just wanted to say I had a ureter stent fitted on one side to prevent the tumours squashing it and causing kidney damage - it may be suggested to you. In fact I had it done before the chemo because once you start chemo you can't have it done because of infection dangers. In your case the priority it probably to get on with the chemo in the hope it will shrink things and make the abdomen more roomy!

I had Carbo Gem for second line but after 3 they found I was platinum resistant. Next for 3rd line was weekly taxol but that wasn't strong enough. If you look at my profile you will see I had one round of the so-called Rotterdam regime which is tougher and more toxic - the Christie recommended it to me, but I had it done at my local hospital and had some problems with bowel issues and infection and they stopped the chemo to investigate. Turns out it was ovarian tumour pressing on and invading sigmoid colon, so threat of bowel blockage. Consulted again at the Christie and they are now giving me Rotterdam as an inpatient to monitor for problems. They say getting a few doses in is the priority, not stop and start. So cisplatin is a route if carboplatin no longer works for you. I get the feeling they will keep on trying to find solutions at the Christie, but it depends how much you are prepared to put up with as regards toxicity and quality of life.

All the very best for the forthcoming treatment¬ xx

[Katsmum in reply to harpist_UK]

Hi harpist, yes I think the Onc wanted to start chemo quickly as there would have been a wait to have a stent fitted. She did mention that they don’t like putting one in part way through but if it becomes necessary then they will just have to! Hopefully the chemo will have a quicker effect. Fortunately there isn’t anything threatening the bowel at present so keeping fingers crossed! Hope your treatment is having the desired results and not too harsh but as you say there is a fine balance between what we can tolerate and still maintain good quality of life! Xxx

[Lizz49]

So sorry to hear your news and that you’ll be going back on treatment again. I haven’t got experience of 3rd line but am sure some of the wise ladies on here can offer their support. It’s sounds as though you have a very pro active team taking care of you and good that you’ll be starting treatment so quickly. Hope you find it relatively manageable and have a good response to it, sending tons of positive healing hugs your way 💖💖💖

Liz Xx

[Katsmum in reply to Lizz49]

Thanks Liz, I do feel better knowing there is support out there as sometimes it’s a very lonely journey especially when it’s hard to speak to family as they don’t seem to realise quite how serious things are. Your hugs and healing thoughts are much appreciated xxx

[gmc920]

Sorry that you are having to deal with this, but glad that there is a plan in place to address it quickly. Sending loads of support and best wishes for knocking it back completely.

xx Gina

[Seasun36-uk]

Wishing you all the best. We are here for you 🌻🌷🌺🌸

[Irisisme]

Hi Katsmum/Jane,

I’m not on 3rd line, only Paclitaxel 2nd line so I can only offer general support. Glad you got your holiday before this latest set back was discovered. It is so weird that so much can be going on in our abdomens and we know nothing about it.

It sounds like your family are in denial about how bad this could be, but you have coped with everything so well I’m not surprised. It has to be ‘one step at a time’ - and one Carboplatin dose at a time, keep monitoring and keep posting - and you do deserve a little time to feel sorry for yourself, this really sucks! I hope you can get at least one member of your family to understand but at least there are ladies here who do.

Good Luck and lots of hugs,

Iris ❤️❤️

[Katsmum in reply to Irisisme]

Thanks Iris I am feeling a bit more positive this morning and yes you are right, I need to go one step at a time rather than second guessing how things will be. I only have my Mum and Dad but they are both nearly 90 and my daughter and her partner who live with me but are very busy people! I hope your treatment is going well and giving the beast a good belting! Thanks for the support

Jane xxx

[Katsmum]

To Katmal - for some reason I can’t see your full post on here but it’s been about 9 months since second line so hopefully it’s enough for platinum to still have an effect xx

[ellseybellsey]

Sorry to hear you are you are having to go through treatment again, can’t help with 3rd line as I’ve just started 3nd line, but know a a couple of ladies on the forum have had 3rd line treatment.

Ellsey xx

[Katsmum in reply to ellseybellsey]

Thanks Ellsey , hope your treatment goes well and bashes the blighter good and proper!! Xxx

[Katiebairdie]

Hello, I started on 3rd line Carbo and Caelyx earlier this year and at the same time Nice opened the doors for people like us to have Niraparib. I had to wait after 4th session for six weeks and then started on the Niraparib. It’s only six days so far but tolerating it very well.

I hope your feeling better today and remember your not alone.

K

[Katsmum in reply to Katiebairdie]

Hi Katie

Yes I am feeling a bit better today and eager to get on with chemo. I did ask my Onc about Niraparib and she said that a PARP inhibitor May be available if the midway scan showed a response so keeping fingers crossed that it works. She also said that there is more in her arsenal if it doesn’t but not sure what that would be! Anyway I am focussing on getting well enough for my next jolly to Portugal and determined to make in August! Might be a bit optimistic but haven’t let chemo stop me so far!!

Thanks for the support, love and hugs

Jane xx

[Mrs_Atko]

Oh Jane this is awful news to read, I’m so sorry. But the positive is that the hospital are acting quickly and you have the memories of your recent holiday to perhaps lift the spirits a little when you need them. I’m sure the stress of it all is most definitely contributing to the tummy troubles and I hope once you get the treatment started, that might settle. Thinking of you and wishing you well for this treatment. Keep those holiday vibes alive in your mind though...they have a wonderful way of offering healing vibes without you even realising xx

[Katsmum in reply to Mrs_Atko]

Thanks Mrs Atko, yes the thoughts of more adventures are keeping me positive but the longest trip I can contemplate at the moment is to the loo!! X

[Mrs_Atko in reply to Katsmum]

Well you gotta start somewhere kiddo! 😉 xx

[Maxjor]

Glad as I followed the replies I saw you are feeling a bit better now getting on with it and all fingers and toes crossed that your recurrence is resolved...or close to it, and you will get on a PARP. I know and read about people on 5th line and more...you seem to be good at focusing on the present and that has to be helpful too. Fingers also crossed about remaining sensitive to platinum! oxoxo

[Katsmum in reply to Maxjor]

Thank you Maxjor I really appreciate the support and encouragement and it’s good to hear that others have had more lines of treatment. My Onc says she has more treatments if this should not work so that’s encouraging too xx

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[Chasinglight]

I'm so sorry to hear this! I have a friend who's sister had third stage liver cancer 17 years ago and is now 71. I have another friend who's had cancer in her ovaries, stage 2 & stage 4 lung cancer and about 7 or 8 times in her bladder and she just turned 83 in June and still going strong. She's had chemo and surgeries, but only laser to the bladder because she told me they can't cut the bladder. I didn't know that. She still does client's hair, drives and has a clear mind. I'll keep you in my prayers. Sending love

[Katsmum in reply to Chasinglight]

Goodness that’s an enormous amount of treatment to go through but good to know that her team are trying everything and it’s been successful for her. Gives us all hope! Xx

[Lily-Anne]

Good luck on Tuesday. I found recurrence quite depressing. I have recurred twice and had chemo both times. Although I recurred again this year I stepped away from chemo. Have you asked what private options and trials are available?

LA xx

[Katsmum in reply to Lily-Anne]

Hi LA

I haven’t as yet although my team did get the tumour tested for some marker or other in case I was able to join a certain trial (can’t remember the name) but I am BRCA negative and also negative for that marker. I will see what happens with the carboplatin and then explore other avenues if it doesn’t work. Xx

[Elfed]

I’m like you, felt pretty well, came back from visiting my daughter in Canada to a nasty ct scan. I started third line carbo/gem, hardest one so far but after 3 sessions it was stopped, think they were pumping me fertiliser as it had grown not shrunk 😱. Already tried zejula back in January and that didn’t work, so now hopefully going to try a trial called dice, don’t know much about it, but getting to the stage of very few options, so I’ll try anything.

I do hope yours goes well all my fingers crossed for good results for you 🤞🤞🤞🤞x