Deja Vu. CEBOC may not be working.

[LittleSan]

So after great results from chemo and again two months after, I've come crashing down again 😔. Ca125 has started rocketing again just as it did in February, three months after chemo. They've brought my CT scan forward to next week with a review the week after.

To say I'm gutted, scared, weary and a whole gamut of other emotions would be an understatement.

Love to all 💐😘

[Hidden]

Oh no this is terrible news, lets hope your CT scan is clear. 🤞 I know the waiting for results is torture, but try to stay busy, easier said than done I know. Wishing you all the best xx

[LittleSan in reply to Hidden]

Thanks Lynn, yes, I've lots to keep me busy and I've a great team behind me. Xx

[Lorent]

Hi Sandra, understand how you are feeling pretty much in the same boat started cisplatin but CA nearly doubled after first infusion. Hoping to stay stable until trial starts in January, hate this dam disease there is never a time when we are not worrying, like Lyn said try keep busy which is so hard as our minds are never free .... Thinking of you that all will go well

Loren ❤️

[LittleSan in reply to Lorent]

It a devil of a disease eh Loren. I'd never wish this situation on anyone but it helps to stop you feeling so lonely when folk can empathise. Xx

[Lorent in reply to LittleSan]

You are so right Sandra, family and friends are great, but only us ladies going through it really know how it feels, thank god for all you lovely girls, it helps knowing you are not alone..... You are in my thoughts and prayers

Loren x

[Coldethyl]

Sorry to read this - hoping the scan shows nothing too untoward and that your team have other treatments to offer x

[LittleSan in reply to Coldethyl]

Thanks. I've got great faith in my team. It's getting tricky though. Xx

[Eriksendi]

So sorry to hear this. Let’s hope it’s a blip and that the scan gives more positive news x x

[Lyndy]

❤️.... sending you a big hug. Let’s hope that it’s something else xx

[Welshandproud]

Oh no so unfair. Sending you lots of love xxxx

[Lindaura]

Oh dear, Sandra,

You have every right to be gutted, we are all gutted for you.

But I did read in the Ceboc trial, that if your cancer progresses, you would be offered both Cedanarib and Olaparib.

Do you think that might help? Do you think you will be offered this?

I not only hope so and I hope these are drugs that might work together to attack the cancer.

But anyway, what a battle.

The roller coaster ride is no fun.

Wishing you all the best.

And hugs,

Laura

[LittleSan in reply to Lindaura]

Yes, Olaparib was supposed to be the next step but they need the CT results to see if there's something stronger required with the ca125 rocketing up so suddenly. It's gone from 41 to 51 to over a 1000 in 6 weeks. Scary stuff.. Xx

[Birdsong222]

Laura calls this a "roller coaster ride" and this is all too true.

It is the longest and scariest ride of our lives.

One so many ladies need to keep on riding time and again!

You may need to get back on board and take all the turns/corners. Or it could be a false start. Fingers crossed and wishing you well for those coming appointments.

Sylvia x

ps. It will soon be Santa season, perhaps your gift will arrive early.

[LittleSan]

Ah, let's hope. Xx

[Samjane]

Think it’s the norm for us all, it’s a rollercoaster of a shit disease we have no control over. At least you’ve got a good team, same as me. Hugs to you from Yorkshire xx

[LittleSan in reply to Samjane]

Thanks Sam, it feels so flipping unfair eh? I rarely do the poor me routine but I'm giving it some Welly this time 😄. Xx

[CarolynA]

Thinking of you and sending love and a gentle hug. Carolyn x 🌸

[January-2016-UK]

Hope you can keep occupied while waiting for the results; it's so difficult waiting. I think that they've said to you that they may need to consider something stronger than the trial drugs means they have something in mind, if needed.

[jools53 in reply to January-2016-UK]

How you doing I’m at the same point same spread etc going on caelyx ! Niraparib made things worse for me , but you have to try ! Onwards and up ! 🙏 xx

[LittleSan in reply to jools53]

Not doing great, starting Olaparib has felt like starting chemo. I'm nauseous, drowsy and have no appetite and my tum is still swelling. My stoicism has abandoned me! Will ring Christies on Monday and see what they say.

Hope the Caelyx does the trick. Xxx

[marylondon]

So disappointing for you after an encouraging period . Your team sounds great & Im sure they ll come up with a plan for you .

X

[Katmal-UK]

Oh no, so not what you need or we want to hear for you either! Everything crossed for the scan. Big Hug. Kathy xx

[LittleSan]

Your hugs and encouragement are greatly appreciated. I'm feeling better today and ready to get on with it whatever the plan may be. Xx

[delia2]

So sorry, Sandra. You've been through so many treatments and I'm sure could use a break and some good news. Hopefully the consultant will have something up his/her sleeve. I hope the scan is better than the CA 125 suggests. Hugs!!!

[LittleSan in reply to delia2]

Thanks Delia. I'm hoping with everything crossed 🤞🏻😊. Xx

[Neona]

Fingers crossed!

[LittleSan in reply to Neona]

Thanks Neona. X

[Btte]

You give it some welly Sandra, then let go of it I am a great believer in change the way you think and it changes the way you feel. It's had to keep me going these past 2/12 yrs as I am now off the Letrozole and just receiving Paliative care. Lots of love and hugs coming your way. BRIDIE xx

[LittleSan in reply to Btte]

Ah thanks Bridie. Yes I too believe that flipping the way you think changes mood. Hope the palliative care is kind and keeps you going to have lovely times. Love and hugs back. Xxx

[juliamillen]

Thinking of you. Let’s hope the scan results are encouraging

Love Julia

[LittleSan in reply to juliamillen]

Thanks Julia. I'm getting more symptomatic by the day but here's hoping they've got something else in the toolbox to keep me going. Xx

[Maxjor]

I so know the feeling of what else do they have for me and when your ca125 rises quickly (been there, done that) that you don't let it get to you and it doesn't always follow what the scan will show. When on Olaparib, mine started to double then triple and my scan came back with "low volume disease" which gave me time to talk to different institutions about trials and not panic --had time to decide. Hoping your scan gives you the results needed to pursue the treatment you want! I have high hopes for you LittleSan. oxox Judy

[LittleSan]

Ah thank you Judy. I really hope you're right. My tum is swelling by the day so I really hope they have something up their sleeve.

How are you doing?

Sandra x

[jools53]

My ca is going mad more progression, parrf didn’t work! Scary frustrating, it just won’t give me a break! Biggest fight of my life , not giving in always hope or even a miracle 🙏 keep your chin up it’s hard very and times I wish I could scream ! We are all together here which is such a comfort! As we don’t always want to share with close ones to much, if that makes sense! God bless us all xx 👍🏻

[LittleSan in reply to jools53]

Arghhh. So sorry to hear this. Yes, being in it together and have folks to truly understand helps. Love, strength and good health to you. 🙏😘

[jools53]

😘

[LittleSan]

I've had my CT results today. So there is new caking around liver, spleen, my omentum and also in the existing marker tumours. There's new fluid in the left lung and ascites around my liver but it's all small volume. Ca125 was 1478 two weeks ago and results weren't back today. They're going to continue with the trial and introduce Olaparib then rescan in the new year unless further problems develop. Better than I expected after my markers rocketed so fast but still pretty crummy. X

[Coldethyl in reply to LittleSan]

Hopefully the olparabib shrinks some of those tumours and that you are in a better place come the January rescan - is further chemo an option at some point ? Thinking of you x

[LittleSan in reply to Coldethyl]

Thank you. Yes, I think it may be still an option but the Rotterdam Regime is the option being bandied about 😫. Really not keen on that... Xx

[Coldethyl]

Heard that’s a harsh regime so hopefully you can kick it a bit further into the grass to allow your body a chance to heal after the recent taxol x

[jools53]

Sorry for distraction! Had to share my excitement with my ongoing constipation! Milk of magnisum brilliant! Careful it work quick amazing 😂😂😂