Deja Vu. CEBOC may not be working. : So after... - My Ovacome

My Ovacome

18,207 membersโ€ข20,349 posts

Deja Vu. CEBOC may not be working.

LittleSan profile image
LittleSan
โ€ข41 Replies

So after great results from chemo and again two months after, I've come crashing down again ๐Ÿ˜”. 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 ๐Ÿ’๐Ÿ˜˜

Written by
LittleSan profile image
LittleSan
To view profiles and participate in discussions please or .
Read more about...
41 Replies
โ€ข

Oh no this is terrible news, lets hope your CT scan is clear. ๐Ÿคž 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 profile image
LittleSanโ€ข in reply to

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

Lorent profile image
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 โค๏ธ

LittleSan profile image
LittleSanโ€ข in reply toLorent

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 profile image
Lorentโ€ข in reply toLittleSan

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 profile image
Coldethyl

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

LittleSan profile image
LittleSanโ€ข in reply toColdethyl

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

Eriksendi profile image
Eriksendi

So sorry to hear this. Letโ€™s hope itโ€™s a blip and that the scan gives more positive news x x

Lyndy profile image
Lyndy

โค๏ธ.... sending you a big hug. Letโ€™s hope that itโ€™s something else xx

Welshandproud profile image
Welshandproud

Oh no so unfair. Sending you lots of love xxxx

Lindaura profile image
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 profile image
LittleSanโ€ข in reply toLindaura

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 profile image
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 profile image
LittleSan

Ah, let's hope. Xx

Samjane profile image
Samjane

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

LittleSan profile image
LittleSanโ€ข in reply toSamjane

Thanks Sam, it feels so flipping unfair eh? I rarely do the poor me routine but I'm giving it some Welly this time ๐Ÿ˜„. Xx

CarolynA profile image
CarolynA

Thinking of you and sending love and a gentle hug. Carolyn x ๐ŸŒธ

January-2016-UK profile image
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 profile image
jools53โ€ข in reply toJanuary-2016-UK

How you doing Iโ€™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 ! ๐Ÿ™ xx

LittleSan profile image
LittleSanโ€ข in reply tojools53

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 profile image
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 profile image
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 profile image
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 profile image
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 profile image
LittleSanโ€ข in reply todelia2

Thanks Delia. I'm hoping with everything crossed ๐Ÿคž๐Ÿป๐Ÿ˜Š. Xx

Neona profile image
Neona

Fingers crossed!

LittleSan profile image
LittleSanโ€ข in reply toNeona

Thanks Neona. X

Btte profile image
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 profile image
LittleSanโ€ข in reply toBtte

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 profile image
juliamillen

Thinking of you. Letโ€™s hope the scan results are encouraging

Love Julia

LittleSan profile image
LittleSanโ€ข in reply tojuliamillen

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 profile image
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 profile image
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 profile image
jools53

My ca is going mad more progression, parrf didnโ€™t work! Scary frustrating, it just wonโ€™t give me a break! Biggest fight of my life , not giving in always hope or even a miracle ๐Ÿ™ keep your chin up itโ€™s hard very and times I wish I could scream ! We are all together here which is such a comfort! As we donโ€™t always want to share with close ones to much, if that makes sense! God bless us all xx ๐Ÿ‘๐Ÿป

LittleSan profile image
LittleSanโ€ข in reply tojools53

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. ๐Ÿ™๐Ÿ˜˜

jools53 profile image
jools53

๐Ÿ˜˜

LittleSan profile image
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 profile image
Coldethylโ€ข in reply toLittleSan

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 profile image
LittleSanโ€ข in reply toColdethyl

Thank you. Yes, I think it may be still an option but the Rotterdam Regime is the option being bandied about ๐Ÿ˜ซ. Really not keen on that... Xx

Coldethyl profile image
Coldethyl

Heard thatโ€™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 profile image
jools53

Sorry for distraction! Had to share my excitement with my ongoing constipation! Milk of magnisum brilliant! Careful it work quick amazing ๐Ÿ˜‚๐Ÿ˜‚๐Ÿ˜‚

Not what you're looking for?

You may also like...

Chemo not working

I'm on 4th line weekly Taxol at the moment. Had 9th one yesterday. The CA125 initially decreased...
Lovis profile image
โ€ข

Chemo not working

Hello lovely people. We've had disappointing news relating to my Mum's chemo which doesn't seem...
Vinney52 profile image
โ€ข

High CA125, chemo/avastin not working

Hi, My mom too is having clear cell 3c ovarian cancer detected in jan 18 with CA-125 of 16k which...
abhijeet9388 profile image
โ€ข

Tablets not working

Ca125 back up to 900, Tamaxofen stopped not working. Not sure what's going to happen next. Another...
Sueithy profile image
โ€ข

Recurrence? Scared.

It's 5 months after my final chemo cycle for stage 1C ovarian cancer and I'm waiting for the...
Alibee2 profile image
โ€ข

Moderation team

See all

Top community tags

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.