I’ve seen my consultant today and she tells me that I have had a partial response to the Carbo/caelyx. All but one lung nodule have gone and all remaining disease is stable. For reasons best known to the phlebotomy department, my CA 125 result had either not been recorded or wasn't done and although my consultant says that imaging trumps a blood marker, I’m still not impressed. I’m having it done again on Tuesday, just before chemo.
Anyway, the news is generally positive and I do feel much better than I did (chemo side effects notwithstanding!).
Hope you are all as well as you can be,
Lots of love, Ali. X
UPDATE:
The CA 125 had been done, but the red writing on the envelope which says URGENT had been ignored. It’s 477 now so it’s gone down 245 - I’ll take that!
Thank you all for your kind replies, love Ali xx
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Hope all is well with you and that you are on top of your side effects.
Lots of love, Ali x
So delighted for you Ali, I understand where you are coming from re blood tests. I also had scan ten days ago and bloods done after my consult. However like you the scan was stable. But it would be nice to know how the bloods are doing wouldn't it
I’m lucky in one respect because I can access all my blood results on line, except for CA125. This is because the medics know it can cause alarm. Scan reports aren’t available either - I guess the medics don’t want to worry people unnecessarily .
I can’t pretend it’s easy, but at the moment I’m focusing on the lovely ladies out there whose treatment isn’t working, is causing real distress or nasty side effects.
I’m feeling fortunate so am wishing everyone well and sending all my love.
Yes, it’s certainly alleviated the worry about the lung nodules, although there was mention of a dodgy node in my armpit which I didn’t know about. Hey ho!
Half way through for you , end in sight & great about the lung nodules. I expect you are a bit thrown about the possible armpit node but , hopefully, the rest of the chemo will wipe it out . I have finished now , scan showed a good response 🥂🥂so start Niraparib mid Oct . Are one of the Parps a possibility for you ? Yes , hope to see you at the next Ovacome day in Spring 19 .
I’m in line for Niraparib if I have the correct response, so hopefully CA125 will drop like a stone. I have wondered about paying for it privately if I miss the CDF criteria. Alternatively there’s the ICON 9 trial, which also has quite firm qualifying criteria. Two to go, then we’ll see.
Delighted that you’ve made the criteria, keep me posted on how it goes. Had my chemo yesterday, so no 🥂 for me at the moment, but I’ll raise a glass of something soft to you later!
Wanting to send you support after reading your post of 11October to Yoshbosh . What a wretched time you are having with your myriad of Itises!! Think you deserve an award for enduring all these !! Hope your team are helping with some symptom relief . Any chance you can just have one more chemo rather than 2 or perhaps a delay of a week to restore yourself a bit more ?
Hang on in there . Perhaps you could plan a little holiday to look forward when you finish .
Yes I am sure you have the strength to see it through and they may reduce the Caelyx a bit . You have got so far with encouraging results to hold on to ..
I am feeling for you as we got a last minute booking to Crete . I am a big Grecophile . Best therapy to restore me before starting Niraparib . X
It was great to meet you too - hope you are well. Booking is underway for next year’s skiing holiday - I’m going even if I can’t ski - I’m better at apres ski anyway! Best wishes, Ali x
Great news Ali. The ca125 has started taking ages to come through at the Christie so I've stopped asking what it is because it's always last appointments results and therefore out of date. It's actually quite liberating not knowing. I'm sure if it's significantly up or down they'll let me know.
I was annoyed because I know the sample was taken and the test may not have been done, but as the imaging result was positive, it didn’t seem to matter about the CA125.
That sounds good, Ali. 👏 I don't know what it is about the ca125 blood test but several times my result had been missing and I've not known what it was. A couple of times the Chemo nurses have said they can't find it and another time, a nurse said the result has to be found on a different computer. Strange! Anyway, let's hope you have a good result from your next test. Keep smiling, love from Solange 😊
You’ve been so courageous over the time since your diagnosis and such great support to everyone here. I hope your results are brilliant - you deserve it!
So glad you wrote and told us about good news. Celebrate, wallow in happiness even, it will give you the energy needed for the rest of your treatment. All the best Gina x
Thank you Gina. I know it’s hard when others are having a shit time, but I’m always delighted to hear of people who are doing well - we need to keep this as positive as we can.
I’m not sure I’ll sail through, but I should be able to keep my head above water with my family life jacket supporting me! Lots of sailing analogies there due to the fact the my bloke is sailing across the Atlantic from the start of November until the middle of December. Original plan meant I would wave him goodbye from Gran Canaria and meet him in St Lucia. Carbo/Caelyx has put paid to that!
I hope all is going well with you, lots of love, Ali xx
This is fantastic news, I hope it continues for you. I personally think the imaging is more reliable than the protein marker in the blood but if you trust the CA125 readings then you have to have it done for your own peace of mind.
I hope it gives the right readings for you and you continue to feel better and as you say chemo side effects notwithstanding.
Be as well as you possibly can be lovely ❤️Xx Jane
Not having a CA125 at the appointment rather spoils our competitive relationship - we always guess on the way to the hospital! I agree that the imaging shows more though.
Whoop whoop!! my lovely S.S. Now that's the news I like to wake up to, on a bright and cold morning in deepest Essex. Many many congratulations. Our bodies do some of the work too and we shouldn't forget that. So now you and I are just about even again, except I have stabilité on my last PET in July (the one that didn't get to the onc for him to see in time so there was some confusion) but I also know that the bugger has increased a little - but not a lot. Still a lot smaller than it was when I first started this mad journey. My CA125 actually dropped 0.6 of a point in hospital - yes, I know that's hardly worth mentioning - so I'm still holding at 155 - the same as I was in April and still less than July (186). So that'll do me, Tommy, for now. Besides, I haven't got the time to think about cancer. I'm too busy eating baby food and producing nice soft chipolatas some time later. When I get home I'm going to try out some recipes with the limited amount of food the regime allows. My next challenge
Have a wonderful Sunday My bezzie is staying with me for a couple of days and today we are off to Finchingfield. Don't know what we'll do when we get there but it's only up the road and my bezzie has become extremely nervous of everything since her husband died 3 weeks ago so I daren't take her very far. She was terrified in Sainsbury's last night and I had to take her to the coffee shop to wait whilst I shopped. Is this normal after a bereavement? Luckily I still have my hubby so I don't know.
Well done again S.S. and big love xxxxxxxxxxxxxxxxx
Thank you Kryssy, it’s so good to hear you back to your old self! Your Holby Shi**y posts were so funny, but always with the frustration of your situation loitering in the background.
I’ve got three more cycles of this poison to go, but am hopeful that I continue to respond and that I can go skiing again next year! Booking will be underway shortly!
I started to respond to your last post, but our burglar alarm went off which set a long and complicated train of events including the need to use another website which then meant that what I had written to you disappeared! So I’ve said it here instead!
Continue to enjoy your stay - I’m so glad everything is working well, and I love your philosophy of not craving stuff you can’t have but remembering what it does to you.
Hi, I was told that my hair might thin, but I have only shed a few more hairs than usual. I wash it gently with baby shampoo, use a leave in conditioner and have it trimmed every 6 weeks - I have kept it short since losing it all on Carbo/Taxol in 2016.
I hope that reassures you, although, of course, we are all different. If you need anymore info with regards to other side effects, either use the forum search facility or ask on this post - many of us have had Carbo/Caelyx so can advise.
Thankyou Ali I lost all of mine too on Carbo & Plaxo and with the winter coming up I really didn’t fancy going back there again you have now given me hope x
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