Hi, so my sister had a reoccurrence after a month and went onto have six weekly one hour sessions of chemotherapy. After five sessions CT has been done. CA125 markers are up. Chemotherapy hasn’t worked so that has been stopped.
I will be seeing her consultant tomorrow with her. I have put to him that we would be interested in the molecular profiling. I think the hospital has used Caris life sciences previously.
Could anyone let me know if they have been in this position. We are now are out of options. Or please let me know any questions that I can ask regarding anything at all.
It’s inoperable, we’ve had a second opinion from Professor Fotopoulou in London and to be honest is really under one of the top cancer centres herself at the moment.
Can I also just ask so that I don’t look stupid tomorrow. Proton beam therapy! What is this?
Can I just say, thanks for everyone’s support throughout this time. I wouldn’t have done it without you guys. Love to all.
Annette
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nettiebobs
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Hi Nettiebobs, I am sorry that the latest chemotherapy hasn't worked for your sister. I am currently on chemo for a recurrence since March 2021 & thankfully it is working for me, at least for the moment anyway. You can never relax with this dreadful disease & you just have to keep hoping that there will always be another option for you. I can't help you out with Proton Beam therapy but hopefully your sister might get on to a trial, if she hasn't looked into this maybe she could ask her team if there is one suitable. I just wanted to wish your sister well, she is so lucky she has a sister who will go to the ends of the earth to help her & I just hope there is something else out there for her. Will be thinking of her Xx
I’m pretty sure that earlier on they’d ruled out trials as she’s not well enough. That’s not to say she isn’t well enough in herself but I think she has to many ‘other things’. I will be asking though. She has a colostomy. She has a stent in her stomach although she will be going home tomorrow with a TPN. She had a nephrostomy for urine and has a stent in one of her kidneys.
Your poor sister has a lot going on alright as if OC is not enough it brings alot of complications with it. I have a colostomy myself but no stents thankfully. I am sure you feel so helpless when you see what she is going through, but you are doing all you can by supporting her through the good days & bad. There is no harm in asking the team about trials anyway & it might give her some glimmer of hope 🙏
I am sorry that you and your Mum are in this situation nettiebobs. I am not sure about proton beam but a friend has recently had microablation which is another radio therapy type procedure. I am guessing the cancer is not platinum sensitive now. No one will think you stupid for wanting to give your Mum every chance… xx
Hi Annette, so sorry about your sister - I also went straight from first to 2nd line therapy. Im 10 weeks into weekly paclitaxol and fortnightly Bevicazumab, it worked well initially but last few weeks im stuck at ca125 500. I have done molecular profiling ,results in but haven’t got them yet (Datar about £3k there are other companies price is similar). Definitely worth a go Id say. There are lots of alternative/complementary therapies, I do those but they’ve not been trialed like chemo drugs. Not heard of proton beam if that’s a possibility for your sister would love to hear more about it.
I’m so sorry to hear about your sister’s recurrence. Ovacome is here to support anyone affected by ovarian cancer; this includes those who have been diagnosed with the disease, as well as their family and friends. If you would ever like to talk things through with a member of our support team, please don’t hesitate to get in touch with us. You can call our support line on 0800 008 7054 or 07503 682 311, email us via support@ovacome.org.uk or send us a message through this forum. We’re here Monday – Friday, 10am – 5pm, to discuss questions, provide information, or just to have a friendly chat.
I can see you’ve had several supportive responses from the forum community and that some have mentioned clinical trials. If this something your sister would like to explore, Cancer Research UK have some information that may be of interest here: cancerresearchuk.org/about-... . Your sister’s clinical team should also be able to offer personalised guidance on this.
In addition, you asked about proton beam therapy. This is a treatment that is not routinely used for people with ovarian cancer, but Macmillan have an information fact sheet that may be useful if you would like to learn more about this: macmillan.org.uk/cancer-inf... .
In addition, I hope that this Ovacome clinical information resource may be of interest to you and you sister at this time: ovacome.org.uk/recurrence .
I also wanted to let you know about Ovacome's friends and family support group, which takes place once a month online via Zoom. This is a safe space to connect with others who are caring for a loved one with ovarian cancer, share information and experiences. For more details about the sessions, please visit: ovacome.org.uk/event/family... . You would be really welcome to join us.
I hope the appointment with your sister’s consultant goes well today.
royalmarsden.nhs.uk/cyberkn.... Found this interesting and am going to ask Ovacome for more info ie criteria to receive this. Didnt know if this would be of any help.
No problem. Why not go to another chemo if you were on caboplatin taxol is effective or avastin with chemo or PARPs or gemzar etc. She should have had a biopsy done with a full genome panel I which case they can look for specific target therapy. Love from paris
Hi Nettiebobs. I just want to say what a great sister you are! I think proton beam therapy is very targeted. My cousin had it for a brain tumor. Surely there are other chemos that can be tried? I wish you both the best.
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