Does anyone have any answers.? Got the news yesterday just trying to come to terms. 3c late stage OV diagnosed April 2018. Debulking -Carboplatin - Carbo Caelyx and failed Rucaparib. Told yesterday there’s nothing else to offer after Taxol.
Naturally devastated. I live in Derbyshire.
Gemimablackvelvet xx
Hi Angela. I’m so sorry you got this horrible news. As you know we follow a very similar trajectory and I started the Rucaparib about the same time as you. Do you know if Laura had any luck with the liver specialist she was going to see? Please keep in touch. Sending all the comfort I can. X
Thanks for your reply. Laura hasn’t been back to us since her good news about finding the righten and I don’t like disturbing her. She usually reply’s was hen she’s ready. I just pray for her deep down as we all do.
Xx
Hello Gemimablackvelvet
I am so sorry that you find yourself in this position. I wonder if a second opinion would give you some clarity?
It is sometimes surprising how differently specialists approach each case. You don’t say if you are considered to be platinum resistant but I note that you don’t list Avastin ... I would think there might be some scope for looking again. You might want to have a session with Anna to work out what to focus on... is it surgery? Or is it further chemo or even radiotherapy?
There are no guarantees but it must be worth asking xx
Hurray you have been Offered Taxol as another treatment . I had weekly taxol and been clear nearly 2 years and I was were you are now. My Oncologist-has said we will know what to use next time.. wishing you every success it is an intense regime but doable.
Well that’s an amazing ti
Well that’s an amazing response Mlowery! So good to hear.
Thank you for replying
Angela xx
thats great and good to know for us who may find us in this situation.
Hello Lyndy, I have asked about Avastin and radiation. I’ve thought about asking Anna or Julia. I asked about a second opinion yesterday. My regular oncologist is on holiday until Monday or Tuesday so I’ll see if he has a different opinion. Just feeling really sick and worried at the moment. Some ladies have good results from Taxol I know but I’ve read it doesn’t destroy nodules in the liver. I am considered platinum resistant yes.
Thank you replying
Angela xx
Hi. I’m so sorry to hear you’ve been given discouraging news but compared to what others have been treated with it seems premature!?! What about Gemzar and Avastin? Trials? I would go ahead on the taxol which seems to work for many but seek a second opinion also. Xx
Hi Delia, thank you for your reply. It’s been a harrowing 2 days searching for answers. I’ve decided to go ahead with the Taxol sooner rather than later. I mentioned trials but the oncologist said there was a hold up of trials at the moment or words to that effect. He was young and very Frank and informative.
It’s just a game of wait and see for all of us isn’t it!
Love Angela xx
hello again Delia, I’ve also mentioned Avastin in the past but the oncologist said it would cost £4,000 per month or similar but I think it was also said it’s only used for first line treatment. Nothing else has been suggested except I remember asking if I could go back on Caelyx at some time as it partially worked last time. It reduced my tumours by 2/3rd . I then started Rucaparib. Taxol is the only chemo offered this time so I assume it’s the best. Especially with the the 2 tumours in my liver. However no one seems quite sure If chemo will destroy liver disease.
Laura has the same problem I believe and is seeking treatment as we speak. We haven’t heard from her since she found a surgeon who assured her he could help. Let’s hope she’s ok and on her way back up.
Thank you again for your reply.
Love from Angela xxx
There are things like Sirt radiotherapy available for liver mets though you might struggle to get that on NHS - you don’t say whether you attend the Christie’s but it is always worth a referral there for a second opinion - sometimes Cisplatin is offered to those deemed carboplatin resistant as it sometimes still works and there’s the Rotterdam regime with it and eptopiside used there.
You could try the taxol and look around for trials that might be open.
Thinking of you x
Thank you for replying so soon. I’ve decided to try the taxol and hope it helps slow down the progress. I’m not sure taxol will help with the small tumours in the liver one can only hope. I’ve asked about radiotherapy but the answer was no. I’ll have to explore all the angles that you amazing ladies have suggested after the Taxol. I’m feeling a little better after all your help. No I’m not at the Christie but that’s where I’d go for a second opinion. My hospital is in Sheffield .
Love from Angela xx
Hi Angela for your info Prof Jayson has suggested a figure of approx £25 thousand pet year for Avastin to me this last week. Best wishes Gwen
Wow that’s interesting. I actually thought the NHS might have approved it now. I wonder not.
Love Angela xx
Hello Angela,
It could be worth asking the Ovacome Support team for their guidance on who may be worth asking a second opinion from. Their freephone number is 0800 008 7054 or their website will give other ways of talking with them.
After my oncologist said my tumours were "too risky for an operation" and I may have two years at the most, my GP backed my request for a second opinion; Prof Christina Fotopoulou at Imperial College and her team:-
imperial.nhs.uk/consultant-...
were able to get them both out and I've been NED since 2013.
Coldethyl's suggestion of Christies, Manchester, (Prof Jayson is their top medical oncologist specialising in ovarian cancer) is really good.
Hope any of these help in asking your questions and finding out if there are other ways to try.
Warm wishes, L
Thank you for replying Lesley. Very interesting message. I’ve heard of Dr. Christina in London but not Dr Jayson at The Christie. I’ll explore all these suggestions. I rang my CSN. Today who said try the Taxol first and see if it’s successful. She had no objections to a second opinion. My regular oncologist is coming back next week so I’ve asked him to ring me. It’s the MDT meeting on Monday they will probably discuss it then. Your story is amazing. I hope your good health continues forever.
Love Angela xx
Hi ,A ngela I am under Prof Jayson at the Christie. He is really good, kind and empathetic. He is def worth going to for a 2nd opinion.. Gwen
,
Hi Angela , I’m also with prof Jason at the Christie. He is a lovely, kind man , and so easy to talk to .He listens to what all your concerns are
Good luckxxx
Good for you, Angela - work with your team whilst exploring independently too. Always remember it is your life so you make the decisons about what help you accept from all these wonderfully skilled people. These decisions aren't always easy, as mine wasn't, but I knew I had to 'let them try'.
And, yes, what a wonderful story now....but we didn't know that on the morning of the surgery! We pinch ourselves everyday that the dice fell right for me. None of us know the outcome in advance, so hold yourself steady , with warmth, compassion and continue to be kind to you and those you love, even though we all have 'dark days and feelings' alongside the love and joy.
Warm wishes, again. L x
Thank you again Lesley,
what kind and loving words. I’m trying to take in everything you’re all saying to me. It’s very hard for everyone I know but great to have each other to talk to. Not sure where I’d be without Healthunlocked.
Love from Angela xx
I recommend getting a second opinion if only for future treatments. I am platinum resistant and am on a new targeted therapy and one of my liver tumours has gone with the other shrunk to 0.5 cm so far. I have clear cell. I got on the trial by going to London for a second opinion. There are still some trials recruiting although some have been paused but worth looking to see what is out there while you try the taxol.
Hi Neona May I ask which hospital in London u went to for your 2 Nd opinion? Thanks. Gwen
I saw Dr Rebecca Kristeleit privately at The London Clinic- cost £360.00 but was well worth it. She referred me immediately to UCLH Research Facility and I saw a doctor there a week later- back on NHS.
Hi Neona, Thanks for this info. I willput the info in my little book in case I need it in future. I have low grade serous and am under the Christie. Doing ok but am told there is slow progression during my review this week but the medics not too worried at moment. Prof.Jayson gave me a list of options but recommended and I have gone with it and that iswatch and wait for 3 months and then rescan. Best wishes. Gwen Xx
Hi Gemimablackvelvet, I just want to wish you well & I hope the taxol does it's job. I had taxol with Carboplatin & Avastin every 3 weeks as first line treatment and tolerated it ok. Unfortunately you might lose your hair with it but I am sure if it gets rid of those tumours you won't care about that. All the best & I hope you will find the strength to carry on Xx🌸
Never fear i had a similar diagnosis..a 32mm tumor in liver plus some cancer in abdomen after 10 taxols stomach stuff gone liver reduced to 21.mm getting petscan in 2 wks probably followed by radiation. Stay strong hugs
OM Goodness Ruebacelle that’s sooo good to hear. I might sleep tonight. X
Are you based in GB because they have said no to Radiation up here in the North of England.
Thank you for replying. I hope the next 8 infusions decrease the cancer to nil.
Love from Angela xx
No live in france.
Hope the weekly Taxol does its work. Do seek a second opinion as there are many other options available.
Thank you I will xx
I just read Lyndy’s reply - I second it wholeheartedly- it is worth a try.
Iris x
Good morning Iris and thank you for replying. It’s all beginning to sink in now so I’ll be re-reading all the replies and advice from the wonderful ladies on here.
Love from Angela xx
Hi Angela do glad you are getting second opinions this is the way to go. Please keep us updated and I really wish you all the best going forward. You got this 💪
Hello. Im in a similar position though a bit 'ahead' in that Ive tried weekly taxol and it helped a bit but not enough to carry on. Im now trying Letrozole. I get the impression my oncologist thinks there are options but if that doesnt work to keep it at bay for longer, so suggest you do get a second opinion and ask Ovacome and CRUK about possible trials as some are opening up again. Wishing you all the best. Jane
Thank you Jane. I emailed Overcome yesterday so I may hear from them tomorrow. So many different chemos but I was only given the option of Taxol as a last resort which scared me of course. My regular oncologist is back sometime next week so he may have some answers. Letrozole hasn’t been mentioned at all. I hope it works for Jane .
All the best Angela xx
Thanks Angela x
Hi Gemimablackvelvet, I'm sorry you have had this news but you have some hopeful messages so take heart. I have just had my first lot of Taxol this afternoon as it happens. I was diagnosed with primary peritoneal cancer in July, had carboplatin which failed, now been told Taxol is the only other possibility besides maybe a clinical trial, so am in a similar situation to you. Let's hope it works for us both. I'm 57 and would like more life!
Wishing you all the very best,
Amanda
Hi Amanda, you’re very young and have many more years left to live. I really hope Taxol works for you. I can’t believe it’s the only thing left for you after only Carboplatin.
I’m much older than you but I too want to live a few more years. It’s human nature I suppose.
All the very best. I’d like to follow you if you don’t mind but mitt sure how to do that.
Lots of love Angela xxx
Maybe try Fenbendazole or CareOncology clinic
Thank you for your reply Share1,
I’ve not heard of that one but I need plenty of bullets to fire when I meet the team. COC I’ve heard of but not explored yet.
Love from Angela xx
Goal for today ;Friday 26th of August
Mindfulness at its best.
Thanks for your thoughts
Good news. Tumour shrinking!
