I Had my 5th infusion of Caelyx/Carbo last Thursday, and thankfully still not doing too bad. Fatigue has been a bit more intense this time round as has the Diarrhoea. but I am coping ok so far. My last CA125 after infusion 4 was 227 down from 1080 so am very pleased with the way things are progressing. Niraparib has been mentioned for maintenance, but also the ICON9 trial but because I am BRCA negative I don't think I am going to qualify for inclusion, which is a shame as I like the idea of being closely monitored and participating in research that may one day find a cure for this horrid disease. I trust my team completely and are confident that they will find me the best treatment available.
Wow its not raining today so I might pop out to a garden centre to drool over all the Christmas decorations. How are you and what are you doing today? 🙋♀️😍
It is great news that you are doing so well! I am so pleased.
Keep asking plenty of questions about Parp inhibitors!! There are often things available, but you need to find the right teams that deal with the trails! (Many in London for example).
Have been following your calex journey as I start on it tomorrow. You have given me hope as have heard such bad stories of side effects and I particularly hate feeling sick . My love in life is walking my dog so hoping I will be able to keep doing this . Am so glad your count is reducing it makes all the trauma worthwhile and if it gives us precious time .. Meg x
I tried not taking the anti-sickness and steroids after my second infusion as one or both gave me terrible indigestion, but it was a big mistake the nausea was horrid. x
So pleased that you are doing well on this regime.
Like you l am BRCA negative. After my second recurrence for which l had carbo/gem, l was included on the ICON9 trial which has two arms to it. I got the Olaparib which l commenced 3+ months ago. Lots of trials will be opening up to us negative folks, whilst the work still continues for those with brca positive disease. You are right it does give peace of mind with the frequent check ups. Stay strong.
So pleased that your doin well Lyn , long may it continue.lm due to see the prof on Monday , so a bit anxious. Raining here as usual in Manchester!!! Started Xmas shopping today to distract myself xxx
Glad to hear that you are coping well. I’ve just finished session 5 of Carboplatin and, like you have managed it okay. My CA125 has dropped into the normal level so I am happy about that. I do have some anxiety about the MRI scan next week but hoping all will be well. Onwards and upwards x
Hi Lynn. It’s Thanksgiving here in the US so your post fit right in. I’m 10 days out from my second Carbo/caelyx. I’ve been sick in bed for days 3-8 but then quite well. So have you found that side effects increase with each cycle? I did get mouth sores this time which are annoying. I’m guessing I’ll have them for the duration. My CA 125 is useless-it went up from 5 to 7 with recurrence. So I’ll be having a scan in January to see if it’s working. If it does I’ll be on a PARP after. I’m BRCA negative too. I envy you being almost done with the chemo! Enjoy the good weather. It’s dark and rainy here on Cape Cod. Xo
Hello Delia2 - My son lives in Brooklyn I got a message from him this morning that he was feeling thankful that I am feeling well. Bless him 💗 No my side effects have not increased with cycles - Thank goodness. I did get one or two mouth ulcers and here in the UK we have a mouth gel called bonjella which works amazingly well, it got rid of my ulcers in two days, hopefully you can find it or something similar where you are. Good luck with your scan xx
Glad to hear things are going in the right direction Lynn.
I was just thinking that I like being on a trial. I feel cosseted! Waiting times are less for clinic appointments, CTs etc and the Team get to know you properly.
I love garden centres and am lucky to live 10 minutes away from Bents which is an absolute cracker!
Yes, I tagged an update to my last post. Not great 😒. They're keeping me on the trial with the addition of Olaparib but there's quite a lot of small volume spread. The ascites has reared up again and I'm feeling pretty uncomfortable. 😔. X
Sorry to hear that, I hope the Olaparib works for you, I have heard great things about it. Get them to drain the ascites, once I said it was keeping me awake at night I was straight in. Good Luck x
Morning! You’re right it’s not raining. I’ve had my chemo delayed because I developed sepsis via a nasty kidney infection but I’m due to start Carbo and Caelyx in 10 days so I’m interested in your side affects. I too will have maintenance drugs so we’re in a similar situation. It’s my first reoccurrence. Keep bashing on. Well done.
Good to hear you're doing ok - if you do get Niraparib, you will still be as closely monitored as if you were on a trial. For the first couple of months you have weekly blood tests, then it moves to fortnightly and then 4 weekly thereafter. I've been on it for over 2 years, and have just come back from having my bloods taken in readiness for collecting the next 4-weeks worth on Monday. Enjoy your Christmas browsing - I did the same last week! x
Glad to hear your news Lyn, as usual you are positive and optimistic! Thanks for being so brave and sharing info with us, your attitude gives the rest of us hope and reassurance, enjoy your trip to the garden centre, they are lovely and cheerful to visit just now. (like yourself lol!) Just now I am gearing myself up for my first oncology team meeting next Friday after just being on letrezole ? for the past three months, using the wait and see approach so praying and hoping my tumours have shrunk. Wishing you all the best with your latest treatments.
Hi Lynn, I'm fine today thank you for asking. The sun was shining here in North Derbyshire all day. I met friends for Christmas lunch and surprisingly ate most of the 3 courses. Struggled a little with Christmas pudding and had to decline the mince pie. My daughter went to the famous Chatsworth Christmas Market and bought me a tall, glittering Nutcracker (to my husband's horror) but I love it. I hope you enjoyed your trip to the garden centre and bought something equally as tasteless. This diagnosis of OC 3c has changed me in so many ways, We have to embrace each celebration like it's our last.
Like you, I started my 4th infusion of carbo/caelyx last Monday and finding it ok up to now. They reduced the caelyx to 80% from 100%. as I found the third infusin really tough. May your CA 125 continue to fall and your pending CT scan be beyond your wildest hopes and expectations. It's Christmas miracles do happen.
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xx
feeling so nervous about Mums appointment on Friday.. 
Feeling desperate!
Feeling lost and so alone 
mum feeling better x
Feeling down 
