Update.........!!

Hello ladies thank you all for your replies on my previous post regarding my anxiety. I have today got my CTscan results and it shows "indeterminate hepatic lesions" in the liver, as as my CA125 has risen yet again to 550 they are saying it is most likely new disease. I have to have an MRI to confirm, but they want to start chemo straight away. To say I am absolutely gutted is an understatement, I had my sights set on another cruise to Russia in September, might have to be a little break nearer home. 😥

[Katmal-UK]

Hi Lyn

When I had my first recurrence I was devastated to say the least. Kept saying the 'F' word for the next 24 hours (not a word I usually use!) - soon got fed up with that and started chemo straight way, my choice. Totally get how you are feeling but you've done this once you can do it again. We are all behind you xx

P.S. Interesting you went on a cruise to Russia, I'd love to maybe try that, I have Russian blood, my late father was Russian from Belarus.

xx Kathy xx

[Hidden in reply to Katmal-UK]

Hi Kathy - thank you I will keep fighting, no not been on a cruise to Russia want to go on one in September.........will have to wait and see how I fair on chemo. xx

[TealSong]

Hi Lyn. So sorry to hear you've had bad news. It sounds like it's being acted on straight away which is good, but I'm sure that doesn't much help how you're feeling at the moment.

Sending hugs xx

[Hidden in reply to TealSong]

Thank you 💕

[Coldethyl]

Sorry to hear this news - hopefully the chemo will knock it back and you’ll enjoy a cruise some other time - plan something nice U.K. based for the better weeks of chemo - I can only imagine how rubbish this must be for you but it looks like they are being very proactive which is good - thinking of you x

[Hidden in reply to Coldethyl]

Thank you 💕

[delia2]

I’m so sorry!!! It sucks but you’ll get through it one day at a time. Is cyber knife surgery an option?

Hang in there.❤️

[Hidden in reply to delia2]

Thank you 💕 - not sure but the abnormalities are in the liver not on??

[delia2 in reply to Hidden]

I don't know much about it but I listen to the BBC podcast "You, Me, and the Big C," and one of the people had it in the liver and the brain.

[LittleSan]

Ah f... ity, fe.., fe.k Lynn. Gutted for you but you'll soon dust yourself down and get your action head on. So flipping disappointing isn't it? 💐😘

[Hidden in reply to LittleSan]

yeah not the news I wanted.......looks like the cruise is off the cards as well, as our insurance company that we used in May when I was NED has declined cover as I will have started treatment by the time the ship sails. Bugger!!!!

[Manchesterlady]

Oh Lyn, I’m so sorry to hear this , I can understand that you must feel gutted by this news .one day at a time Lyn . This is such a s....y disease which takes such huge courage to deal with . But you can do it . Sending love

Sheila xx

[Hidden in reply to Manchesterlady]

Thank you 💕

[Lizz49]

So sorry Lyn to hear you got the news you didn’t want, I’m sure in a few days when you’ve got your head around it you’ll get your fighting spirit back and kick it back into touch again!

You’re strong and you got through this last time, and you’ll do it again 💪 sending you tons of virtual hugs and positivity,

Liz Xx 💖

[Hidden in reply to Lizz49]

Thank you 💕

[Lindaura]

Oh, Lyn,

That is really bad news.

The first recurrence is like a kick in your gut.

Throws the cancer back in your face and you know you have to deal with it. It is sobering as well as heart breaking.

These scans are really tricky. The report really depends on the reader.

I just received my CT scan report. I started with one tiny nodule left after second line Carbo/Caelyx, 3 months later the report read that I actually had two nodules showing in that first scan. Today the scan report showed that I actually had 3 modules, because they gave the measurements of each and they had all doubled! They are still tiny, but it shows progression, so I too am gutted.

I plan to post tomorrow, when I get more feedback about what we do next.

Why I say this to you, is because your scans seemed so equivocal.

I hope this next reader is more thorough.

All I can do now is wish you the best.

Second line is not as difficult usually, so you might be able to make that cruise.

Best wishes,

Laura

[Hidden in reply to Lindaura]

Thank you 💕 good luck with your treatment, have your team mentioned Olaparib?

[Doglover1410]

Aww so sorry to read this, but at least they’ve spotted it and chemo is starting straight away. Hope it goes ok for you and you can plan another even bigger, better cruise for when it’s done!

Sending hugs xx

[Hidden in reply to Doglover1410]

Thank you 💕

[gmc920]

So sorry to hear this, Lyn, but I’m confident you will beat this back again and then go on some fabulous holidays!

xx Gina

[Hidden in reply to gmc920]

Thank you 💕

[Avocapearl]

Devastated to get my occurrence. So bloody angry.Had trip to the States in the planning.Now have a couple of UK short breaks sorted and hopefully Spain when current chemo finished. I'm half way through now. Scan on Friday to see how it's going.

Good luck x

[Hidden in reply to Avocapearl]

Thank you - Good luck with your scan on Friday. We are sorting out a UK break instead of a cruise to Russia as the Insurance whilst having treatment is totally ridiculous at £1.300 - £1.800, we have shopped around for cruise insurance and some have flatly refused as soon as I say I am heading for chemo.

[Flamingobeef18 in reply to Hidden]

Hi

At the risk of sounding like a broken record have you looked at the WI travel insurance? No medical questions at all and it makes no difference what stage of treatment you are at so long as not been diagnosed as in terminal stage. Also very reasonable at less than £300 for 12 months world wide travel including cruises.

I have had a number of cruises whilst on chemo with my Oncologist happy to give me a treatment break to allow me to get away. They have all been wonderful by the way.

So don’t give up on it yet.

Best wishes

Juliax

[Lockygill]

Sorry to hear this and I know how you feel. I am waiting to heal from my op and will start chemo in a few weeks. Hoping I can get my life back on track after that x

[Hidden in reply to Lockygill]

Wishing you a speedy recovery from your op, and good luck with the chemo. x

[TarbonNZ]

Must be the year for bad news. Second recurrence diagnosed last week.. Rising CA125, and ct shows progressing disease, with nodules of increasing size in peritoneum.😩😩 Only good news is no mets on major organs, (yet), and no ascites. Also apparently have two adnexal cysts, one is complex with a solid component, and is growing. Currently 62mm. Delaying treatment as long as possible, with 6 weekly reviews. I am feeling pretty good at the moment, so want to make the most of that. I am still apparently platinum tolerant. Last chemo was Carboplatin and Gemcitabine. Carbo will feature again, not sure with what else. Best of luck Lyn.

[Hidden in reply to TarbonNZ]

Thank you, was hoping 2019 was going to be a kinder year, but apparently not, trying to keep upbeat but "secondary liver cancer" OMG

[sticky3006]

You must be really cheesed off. I think one of the most annoying thing is our lack of control over what happens to our body. Thats how I feel anyway. There's so much I want to do with my life yet I feel that cancer will control it all which makes me so angry. But as others have said you will get through this and the cruise will still be there for you to go on. You can still plan your adventure and it'll give you a goal for the end of treatment. Good luck and we'll all be thinking of you, sticky3006 xx

[Hidden]

Thank you - your absolutely right, I feel as if I am having a war with cancer and the cancer is winning at the moment, its laughing at me and saying "see you are not stronger than me!" having a bit of a wobbly at the moment but I know it will pass and once I have had my MRI and know exactly what I am up against I will get my mojo back! I WILL go to Russia maybe not this year as planned but I WILL go one day. Planning holidays and arranging trips keeps me sane and I refuse to give up on enjoying the life I have left. x

[Maxjor]

So sorry Lyn--it is so OK to feel gutted--and once you have your plan in place and know you will attack head one, it sometimes relieves that feeling to some extent. If you know what treatment you will be getting, some of them would allow you some time to go away during treatment (if you felt up to it). I know Carbo Caelyx is once a month and after that first week post-infusion, I felt fine...that's three weeks where you could plan something....if you wanted to go away during treatment. We left for Scandinavia on a trip one week after chemo recently, and I felt fine and the best part is while in treatment, I totally forgot I was in treatment or even a cancer patient. Russia sounds amazing! And I bet you have other places on your bucket list too! oxoxox Judy

[Hidden in reply to Maxjor]

Thank you Judy I hope I will fair as well as you on Carbo/Caelyx not relishing the thought of going back to chemo, I was aware it would probably happen but hadn't anticipated it would be quite so soon. Oh well may I can have a nice long remission after my first recurrence. Trying to stay positive. xx

[JayGeeCee]

What an absolutely awful kick in the teeth.

The cruise can wait till you’ve kicked the beast into touch again Lyn. Then you can go and have that amazing trip.

Sending you hugs and positive vibes

Joy xx

[Hidden in reply to JayGeeCee]

Thank you 💕

[Artgreen]

I am so sorry to hear that. It p*****s me off having to dig deep to continually find the resilience needed to combat what life throws at us.

It’s ok to have a low day or two before girding the loins again so to speak. Today I’m having a wallow day and tomorrow the big girl knickers come out again.

Thinking of you xx

[Hidden in reply to Artgreen]

Nothing wrong in a good old wallow! I fully intend to have a few luxury treats over the next few weeks, hopefully by the time I am due to start 2nd line treatment I also will have found my big girl knickers. 🙋‍♀️💪 x

[Solange]

Lynn, I'm sad to read your news but feel it's good that they are starting you on Chemo straight away. Fingers crossed it does it's job. Sorry about your cruise but maybe you can have a few short breaks until Chemo has done it's job and then - your Russian Cruise. 🤞Love, Solange 😊

[Hidden in reply to Solange]

Thank you Solange, yes the plan is Caelyx and Carbo, then a parb, once I have a date for chemo I can calculate and then I am going to book the Isle of wight, not Russia I know but I do love it. Hopefully also a week in Norfolk but perhaps not boating 🤣 I want to make sure that I feel 100% before venturing up the solent. Hope you are keeping well. x

[Maus123]

Aw crap. Sorry Lyn, that's not welcome news. It's super scary and surreal at the same time, this recurrence stuff, isn't it?

What regimen will you get?

But don't give up. You will get through this round too, and beat it back. Just get started with treatment, and - as the other ladies said - take one step / one round at a time. At least this time you know how to handle chemo.

Maybe you can bring your alternative short break forward and go right away? And then start chemo after. Hugs, Maus

[Hidden]

Hello Maus - I am apparently Platinum Resistant/Refractory, so they are suggesting Caelyx as a single agent. My CA125 has been doubling since I finished chemo, watch and wait for 7 months has been extremely hard so am anxious to get going with some treatment and stop the B growing anymore. Here's the thing though, they are know saying it might not be the nodules in my liver after all?? Am scheduled to have an MRI to try to locate where its all hiding. xx