I was initially diagnosed May 22 HG3OC. I had debulking surgery. I then had 6 rounds of carbo/taxol. I am BRAC1 and was on Olaparib. I was just going through the normal motions when in September 24 CA125 had risen and had a scan and tumours spotted. I had more debulking in October 24 and started chemo in November 24. This time carbo/caylex. My CA125 continued to rise they said don’t be alarmed. After 4 rounds and then had a scan they’ve said chemo hasn’t worked and we can see little specks again. They want me to do weekly taxol and Bevacizumab. However, after chatting they’ve basically said that I’ve got about 12/18 months with or without the treatment. I have directly asked about time and quality and quantity. In my head I’m just like give up on the chemo as carbo/caylex has made me feel awful. The biggest issue I’ve got is my 12 year old who doesn’t obviously want me to die. What do I do? Just keep enduring the crappy chemo? It’s hard when I knew that it wasn’t going to be curative anymore but going from you need to live with this like a long term illness to you’ve got a year has happened very quickly. Any words of wisdom would be greatly appreciated.
Thanks Kelly
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KelOC38
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I'm really sorry you've had this news. Have you asked if there are any relevant trials? Are you at a major cancer centre? Can you get a second opinion? As I understand it, Elahere is currently under review by NICE for platinum resistant OC. Might you be eligible for that if/when it comes through. Could you ask for a sample to be tested for FRA expression so you know whether it might be appropriate? I know it's hanging on hoping, but OC seems so unpredictable, and treatments work so variably for different people, doctors can never know with absolute certainty what's going to happen. You might respond brilliantly to the Bev. And in 18 months time, there could be new options coming through.
I am so sorry you are in this position- I get how hard this is for you and your family especially your daughter. I feel you need to think about what you want as you already said more anti-cancer treatment doesn't mean quality of life . Do you have a good Clinical specialist nurse who will help talk things through and maybe with the support of the palliative care team ( who specialise in quality of life and living your best life ) space to talk honestly about how you are feeling then from there allow your daughter to talk and help her understand what is happening and maybe why active treatment is possible causing more harm than good?! This is so difficult because as a mum ( I have a daughter, older but still my baby) you want them to see you strong and want to protect them. Don't do this alone and use specialise teams around you to support and help you! As previously said continue to ask about trials but focus on you and your daughter and what is important to you - I really wish you strength and love xxx
Kelly I wish I had some words of wisdom for you. I had late stage 3 but not the brca gene. 8 rounds of chemo and now I’m on Niraparib. The thought of reoccurrence and what I might do is constantly on my mind. My advice for what it’s worth is to phone and speak to someone on the MacMillan helpline. They’re knowledgeable and really helpful and understanding. . My heart goes out to you. Talk to someone. Best wishes ❤️
Hi Kelly, I’m so sorry you’ve had such crappy news. I would definitely get a second opinion and then make my decision. Sending love and hugs to you, Sally xxx
Thanks for responding to me. I do value your kind words. Last week I met with the palliative care team. That was a big shock to my system. I have obviously thought about lots of things and I have already planned what I’d like my funeral to look like, my will is up to date, we’ve been organised with finances. Just having to say out loud to a stranger and making decisions about where you’d like to die isn’t fun. They were very lovely and they’ll come back to see me next week. I’m also seeing a therapist at Maggie’s who I saw yesterday. I had to change oncologist because we moved areas. So my old oncologist has also given me their thoughts and recommendations and they’ve said exactly the same treatment plan. My only CNS is amazing and they check up on my still. My new CNS is coming to see me next week as I’ve only spoken to them on the phone before. They (medical people) all seem to want me to try the taxol/bev. I know about the new drug that hasn’t been approved yet, but feel like that’s not on the table yet and clutching at straws. Even trials I’m not convinced about. I do accept what’s happening. It’s just horrible the bit between now and the end. My daughters school which happens to be where I also teach are being amazing and offering lots of support. The palliative care team also offered support for her and my family. Thanks again Kelly x
I'm very sorry that you have had this diagnosis, and would agree with everyone else that you should try and talk to McMillan or Ovacom.You didn't say how you got on with your initial chemo regime (the carbo/taxol)? I just wonder if it is worth trying the taxol/bev? I had this in weekly doses, and found it surprisingly tolerable. I thought that 3 weekly was better because you might have 1 week when you feel normal, but in fact I felt amazingly fine, I think it's because it's a small drip feed into your system rather than an onslaught. You could try the first session or two and see how it goes?
I can't understand that your team would push for this if they don't think it will give you any more time, it doesn't make sense, so perhaps talk to them again about their reasons for wanting you on it.
I also think it is worth getting a second opinion.
Mirvetuximab soravtansine about to be available on Nice for platinum resistant patients so do follow that up if you can and second opinion marsden or Christie depending where you are - all the luck in the world!
My heart is with you. The foremost oc people seem to be Gordon Jayson at Christie's in Manchester and Christina Fotopoulou (check spelling on Marsden website). If you have already had a second opinion on NHS, it would be worth paying to see one of them privately, if you have some funds. Do seek whole family counselling and I wish there is some help available for you. Emma xx
Firstly I like to say I am sorry to hear this. I can totally relate to how you feel and how it feels to be a mom of a 12 year old. My younger son was 15 years old when I was diagnosed and initially we didn’t tell him but once he knew, it was very very hard to see him worry. I was diagnosed with HG Endometroid Ovarian Cancer with no genetic markers. Also a double rare cancer. I am still here and thriving. Surgery in Nov, 2022 and then Carbo/Taxol which did not work.
At that point, I just started praying. Praying hard, for god to let me live for my sons and then I qualified for immunotherapy which has for most part worked wonders for me. I needed some targeted radiation for one tumour that kept on growing on immuno.
Cancer feeds on a weak immune system. I take a diet rich in antioxidants that reduces inflammation in our bodies. I overhauled my entire diet. I cut out all refined sugar, dairy, eggs and all meat. I started eating lots of berries, walnuts, sunflower seeds, pumpkin seeds and drinking green smoothies, turmeric tea, Soursop tea, daily. Physical activity, sweating and proper sleep helped me too. I also learned from other cancer warriors that cancer is not necessarily a death sentence. We have to stay positive and do everything in our power to survive for the ones we love. Please read more on American Cancer Society’s web page. There is a lot of good info there and recipes too. Also there is this Instagram page: Prevail over Cancer. It has great tips that I follow.
Please get a second opinion. New treatments are coming out every month. Ask if you would qualify for Pembrolizumab (immunotherapy). It has been a miracle for many including myself.
Hi. You’ve gotten a lot of good advice here. I have often thought I don’t want to end up on weekly taxol but I’m in the US and starting on mirvetuxemab next week. You might want to get tested for folate alpha receptor and HER2 which also can be treated with a new antibody drug conjugate. I hear that you are preparing yourself to accept that your situation is hopeless and that you don’t want to spend your last year on chemo. But every week is so valuable for your child. I’m not saying you should do the taxol if you don’t want to but getting into a trial might really be worth it. You have low volume disease which is easiest to treat and at least keep stable. Anyway, I feel for you and your family, and I’m sorry you find yourself here.
I had Bevacizmab last year, every 3 weeks and had hardly any symptoms and felt very well . Worth a try.
You’ve been given good advice re trails and trying a 2nd opinion by a specialist centre if you can. Keep fighting you never know what will work best for you.
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