I do hope you are all keeping well. I am unfortunately facing another round of treatment for recurrence. I had my last carboplatin treatment in Nov 2021 so I am now classed as platinum resistant (I've had two opinions on this) so GemCis is not suitable. I was NED in December and went on Olaparib in January but my scan in May showed that it wasn't working. I have also been told that surgery is not an option now.
Options I have been given are mainly two:
Avastin + weekly paclitaxel;
Trial - I think the best one sounds like the Mirsaol trial but only if my tissue is folate receptive (30% chance) and then there's a 50/50 chance of getting on to the arm of the trial with the drug.
In addition, there's also the question of sequencing, with one oncologist strongly recommending going with the standard of care they know works, ie avastin + paclitaxel, and seeing where I am with the trial after the treatment in option 1.
Would really appreciate other experiences of what has worked for them.
Thank you so much
Lisa
xxx
Written by
Meridian14
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Sorry to hear you're facing a recurrence, Lisa. It blows that surgery is out (although, have you checked with the ultra-radical surgeon in London... Mrs C. F.?).
It's agonizing when we have to make a choice like that. Feels like walking along a cliff blindsided. Sometimes I think that in the end though, we just have select a path for ourselves, based on best effort and the oncological advice we receive... and maybe a bit of gut feel... since it has to be one we believe we can live with - even if it doesn't work.
Some thoughts:
1. Clinical trial participation could mean you will be monitored very closely, which can be a good thing. Is there any path constraint i.e. could you start on the trial if you meet the requirements, and if it doesn't work (no matter which arm you're in), you could still fall back on the standard paclitaxel/avastin combo, or is that not feasible? Same question in case you opted to start with paclitaxel/avastin and would want to switch to a trial upon progression.. would that be feasible/advisable/allowed? That might influence your choice.
2. Genetic sequencing (if I understood your reference correctly?) could be useful too, if you have access to it (ideally to be covered by insurance or research programs, as it tends to be costly; here in Germany it could cost ~4000 GBP otherwise). Potential findings of specific genetic alterations/mutations might open up additional trials, treatment regimens or screening programs.
Only downside - aside from cost if you have to self-fund - is that it seems to take 6+ weeks to get the results, at least over here in Germany (might be faster in the UK?), by which time you might have wanted to make a treatment decision already.
But whatever your choice and even without genetics being analysed, both options on the table seem offer a light at the end of the tunnel and so you win either way, because you're taking it by the horns. Wishing you strength and luck! I hope you beat the beast back quickly this round. xx. Maus
NB:
I had a test for tumor-relevant / hereditary genetic anomalies done in February this year, and it turns out I'm 'special'.. uh oh... in that I'm proud (yay?) owner of a clinically relevant rad51c genetic mutation, which in turn means I'm getting into a close screening program at the university hospital for breast cancer - due to the increased risk... which is fab (the screening.. not so much the risk ). My mom and sister will be tested too but chances are the mutation orginated with me. We all said the same thing though... If the testing/screening is free.. bring it!
Regarding choices: I am currently making the conscious choice to decline my oncologist's offer of switching to a different aromatase inhibitor maintenance therapy to try and curtail side effects (away from Letrozole, which leaves me living with a perceived max. 20% 'battery'/life energy and having to scale down to part time work due to severe fatigue). Yeah.. sure... I'd love to feel less like a zombie if given a chance. But better a zombie able to delay the next recurrence a while longer (4+ yrs and counting right now), than switching to an untested alternative (as there's little to no data available for the other agents), feeling great for a few weeks only to recur faster. Nothing is certain though and who knows, I might recur on Letrozole next week (an excuse to stop working again ), or neither Letrozole nor alternatives have any effect anyway etc. But I am just not willing to take that risk. Even a zombie can be happy once in a while .
Given my luck though.. once I snuff it and start discussing entrance ticket prices with the gatekeeper above, he'll probably tell me: 'You know, you could have saved yourself years of fatigue and other nasty side effects. It was the orange juice that held off the recurrence!' Then I'll have to concede a point to the orange juice, right after decking the gatekeeper to make me feel better . (ramble off)
Thanks so much for your well thought through response.
I did indeed contact Prof. F. Generally not good to have surgery if platinum resistant. Booo that sucks.
I have mulled over; trial first and taxol/avastin later and vice versa. The trial is now closed so if I don't do it now then i'll have missed the boat on that one (if it turns out I'm eligible - depending on my tissue test result). currently trying to arrange for a baseline scan as my previous CT scan was over 2 months ago. The results of my CT scan may also be a deciding factor on what to do.
As for sequencing, i meant which treatment to do first and which to keep in the back pocket for later, though options are limited at this state of play.
I was in the throes of getting some genetic testing carried out previously but my health insurance providers needed more info as to the whys and wherefores, and then my provider changed so it went by the wayside and other distractions got in the way - so maybe a possible revisit to that.
It sounds like you have a lot going on and a fair bit of decision making going on yourself... even harder when you're in that 'Zombie' state, but glad to hear that it's not all bad. And 4+ years! long may that continue... I'm sure the gatekeeper will be wishing that for you too, with the added bonus that they won't be on the receiving end of your right hook 😉
All the very best to you Maus. Loving the humour - always helps. Keep on keeping on. xx
Thinking back to my 2nd recurrence taxol avastin works the mirasol trial is getting good reviews. You might see if you qualify then you can make a decision with more assurance. Hugs from paris
The 'placebo' group in a trial for cancer still gets the treatment (of you and your doc's choice), but not the trial drug. So, if you happen to fall into the 'placebo' group, you may be able to ask for Avastain/Paclitaxol or any other drugs. From what I read, the folate receptor trial had 60% response rate, one of the most successful ones. I myself would like my tumor to be tested if I can, but you have to agree to participate in the trial to be tested. I am currently on a different trial, and if this doesn't work in the end, I am planning to switch or get it after it is approved by FDA. In the US, the company who started the folate receptor trial, Immunogen, filed for expedited approval. I found the qualification of doctors and nurses involved in the trial superior to my previous team. And, I get closely monitored.
Another point is that at some point these traditional chemo drugs stop working, but the trial like folate receptor would not once your tumor is receptive to it, since it is a different type of treatment. The drug binds to the folate receptor in your tumor, and once bound, it delivers the drug like paclitaxol into your tumor, killing it. So, the side effect will be also mild, since it is designed to kill only the folate receptor expressing cancer cells.
This is very interesting. Thank you for more info. on this trial. i'm crossing everything i have in the hope that my tissue test result will be positive. All the best to you Soyoon. hoping the current trial that you are on works for you. xx
You’ve gotten good advice here. I would definitely have the genetic testing anyway and seriously consider the trial for the reasons others have given. I wish you luck with whichever way you go. Xx
My mom get again carboplatin same as first time and after 1st recurrance till now it looks like it is working ca is down affer 2nd from 300 to 116, she will have ct scan and hope it will be better
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). My mom and sister will be tested too but chances are the mutation orginated with me. We all said the same thing though... If the testing/screening is free.. bring it!
), or neither Letrozole nor alternatives have any effect anyway etc. But I am just not willing to take that risk. Even a zombie can be happy once in a while 
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