So after great results from chemo and again two months after, I've come crashing down again ๐. 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 ๐๐
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LittleSan
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Oh no this is terrible news, lets hope your CT scan is clear. ๐ค 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
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
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
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
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.
Think itโs the norm for us all, itโs a rollercoaster of a shit disease we have no control over. At least youโve got a good team, same as me. Hugs to you from Yorkshire xx
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.
How you doing Iโm at the same point same spread etc going on caelyx ! Niraparib made things worse for me , but you have to try ! Onwards and up ! ๐ xx
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.
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!!!
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
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
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
My ca is going mad more progression, parrf didnโt work! Scary frustrating, it just wonโt give me a break! Biggest fight of my life , not giving in always hope or even a miracle ๐ keep your chin up itโs hard very and times I wish I could scream ! We are all together here which is such a comfort! As we donโt always want to share with close ones to much, if that makes sense! God bless us all xx ๐๐ป
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
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
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