I haven’t posted or even looked at this site for a few weeks now, as I defaulted to my usual stance of avoidance. If I don’t talk about it or read about it, it will go away. I’m in a better head space now and want to share the update, in the hope of some positive stories from anyone with a similar experience.
I m stage 4 HGS . I had 6 rounds of carbo/taxol/avastin. Interval and delayed debulking not done as deemed too risky. I did however have a partial response, CA125 reducing from 12000 to 4000. (So high)
Mesenteric disease was the main problem as it was too close to the bowel. I did seek a second opinion from Christina Fotopoulu’s team at the Queen Charlotte. I went into surgery however it was deemed that the risks outweighed the benefits and nothing was removed. I do not have a mass but “peppering” of the disease over many organs. It was far more widespread than the scans revealed.
I am going to have 1 more round of carbo, just so that I am eligible to have Olaparib plus I will have three weekly infusions of Avastin.
I am totally gutted with the outcome and am struggling to regain the positivity I felt going into surgery. It was not what I was expecting. x
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Beaver54
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Hello - I’m not surprised you’re feeling gutted and finding it hard to get positive. I’m so sorry to hear your update. This disease is a !*#€$ I’m sure there’ll be some replies from ladies with more experience than me soon. I just wanted to reach out and send some love xx
I am so very sorry to hear your update and I totally get that you needed to be in a safe space of avoidance while you tried to stabilise your emotions. I hope you do get responses. I am on a Facebook group for OC and there are a lot of ladies on there who respond to posts with their experiences. Just mentioning this, in case you use FB and hadn't thought of going into a group on there. There is also the Ovacome Helpline and the MacMillan Helpline. It sounds as though you are going to be offered more treatment with another carbo so that you can have Olaparib. So hold onto that bit of information as much as you can. Warm hugs are sent your way x
Sorry to hear your news. Of course you're struggling, it's devastating to hear news like that. It shows what a horrible disease OvCa is. Well done for picking yourself up and reaching out again. I can't offer any advice but sending hugs!
Sorry to hear you're feeling down, but please take a look at the AstraZeneca September trial outcome of the Paolo 111. It's very encouraging for us at stage 4! It shows real promise if you take the avastin alongside the lynpraza together, on the trial there have been ladies even getting to NED 🥳 look it up! I've tried to copy it t the page for you as I think it will give you the hope you need now X
Oh thank you Newberry 3. That is encouraging and I will definitely look it up. Thank you for taking the time to reply to me. So appreciated as I really do need hope.. x
We are on our way to London! I have booked The Savoy for the night plus the River Restaurant and American Bar!! 🥳 My excuse is Bucket list (My husband is sweating 🤣) I'm not going anywhere soon though lol X Merry Christmas x
It was fabulous! This is us and my new hair! (Used to be long and dark). Back to reality now though and cooking my own Sunday lunch 😅😊 I'm so so glad the trial notes helped, I know it helps me to read them daily! X
1million % we do! I'm exhausted today so have a film day but it was so worth it. And thank you, I feel well most days but do have the aching joints but it's a small price to pay. X
Hi. I totally get your feeling shocked and unhappy after expecting surgery and not getting it in the end. I do however have great hope for the Olaparib and Avastin combo. I just had Olaparib for three years after recurrence and it cleared up my cancer that remained after chemo. I couldn’t believe it. So sending positive thoughts for that treatment for you! Xx
Hi There, I think I can give you some hope or at least empathise as I seem to be the queen of open close surgery having had one after 3 months of chemo and trying after 6 months with the same result! I know what its like and it seems so unfair. I've been laid in the ward after hearing of everyone elses successful surgery so I know how you feel.But I didn't feel down for long about them as I was glad I tried and my mind was more at rest that it wasn't the right option for me after the 2nd one. You should consider yourself really brave to walk into a surgery like that. Surgery I believe(although I'm no expert) is historically and currently an important part of treatment and that was why I was determined to try to have it. I think in a few weeks hopefully you'll come to terms with it and be glad you tried.
I am Stage 4a and HRD Neg so my next option was Niraparib. I had an in range CA125 after chemo and going into the 2nd op but the disease they found seems more wide spread than yours. I was so scared of relying just on the parp after this. But I am now settled on the parp, have hair back, feeling good and CA125 has gone down and stabilsed around 13 after 4 months on the parp/6 months after last chemo. I feel so grateful to have had this result so far and hope it will continue but live around the monthly blood test results. The Olaparib could work well for you and you have the extra boost of the Avastin on top.
Its such a brutal journey especially when surgery is in doubt but hold on because your next option might work well and hopefully new drugs will be coming too! We are all individuals and the cancer takes such different patterns that I guess they try different things in the hope they find the right combination to keep us in remission.
So stay strong with the process, you have got this! Feel free to pm me if you need to chat xx
Thank you so much BlueHue. You’re spot on in what you said about other patients having better outcomes. I hated myself for feeling envious but at the same time delighted for them. I am delighted for you too, being settled on the parp. Long may it continue. 🙏🏻 xx
Hello, so pleased that you felt able to reach out again and so sorry that the outcome of the surgery was not what you were hoping for.
I can sympathise with you as I too had surgery by CF in September 2022 but it was a case of open and close. Like you, wide spread ‘peppering’. I was so disappointed and frightened but still felt I had made the right decision, you did too. If you hadn’t had the courage to opt for surgery you would probably be forever wondering how it might have gone.
So it’s 15 months since my op, I’m coming to the end of the Avastin which has been easy to cope with and continue with Olaparib which I find easy to tolerate after the initial nausea for the first few weeks (controlled well with Metochlopramide) To date no progression.
I hope this gives you some reassurance and that your feelings of positivity out weigh the negative ones that creep in.
Thank you Lisa. I am reassured by your positive message. Also wonderful to hear that you remain stable with no progression. Long may it continue.
I thought at first, after the op, that I would have been better off not having it and remain in ignorant bliss as to its severity, but actually I now know that I made the right decision. I would have been forever wondering, what if. There’s enough going on to mess with my head, without adding more.
Hello Beaver54 , I have been thinking of you and wondering how things had gone . I’m sorry you’ve had to cope with this distress . There have been lots of positive stories on here , which I hope have helped you to look forward .Several of us are doing well on the Olaparib/ Avastin combination and hopefully you will too .
Hi Karen . So lovely of you to think of me. I’m settling in to the fact that surgery is t an option for me, and thanks to all the positive comments on here and reassurance I am in a much better head space. I had chemo on Wednesday and they told me that by ca125 had gone down another 1000. (Now just ove 2000). That really surprised me as the last treatment I had was September and then I had the op 10th November. I was told there that my ca125 would have gone up because of the op so a reduction was not what I expected. Although it’s still very high . That gave me a boost. Starting on olaparaib and Avastin in the new year.
hello beaver54. This disease is so very difficult to deal with emotionally isn’t it? There is amazing advice from the ladies out there! Keep your chin up and go have some fun! I do hope they can find the right combination for you!
Thank you Debbie. I didn’t know how quickly my emotions could change ….in the blink of an eye…but right now I’m feeling positive after the great advice and reassurance from all of you ladies. Excited about starting new treatment in the New Year .
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