Hi, this is what my wife has (stage 3c) - if any of you ladies have the same and have had 1,2,3 or more recurrences....is it possible you could let us know the treatment you have had. My wife has had:
CARBO/TAXOL JAN - MAY 2011
TAXOL NOV - DEC 2011
GEM/CARBO JAN - JUNE 2012
Now waiting for (probably) a phase 1 trial.
As you will note from the dates of chemo, she has never really had any real time off of chemo, and her CA125 has never got below 100.
So for us its fingers crossed that a longer period of 'time off' is still around the corner for her, so anyone that has the same type (serous) it would be interesting (wrong word, but you know what i mean) to see what others have had and how it worked.
Of course we know everyone is individual and just because something worked, or didnt, for one, doesnt mean it would for another. But just the same any info may be useful.
Thank you
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thanks for your response......i have seen and referred to that before and i did find it of some use, but it is more general.
I was hoping that those who have High Grade Serous may throw something into the pot that we can discuss with our Onc.
I know that molecular characteristics (MC) is something that some Oncs look into, so my reasoning was someone with Serous 'may' have similar MC to my wife.
But i appreciate you taking the time to respond....thanks..
Hi I am not quite sure what your question is.............
I was diagnosed with "high grade serous adenocarcenoma" I had a hysterectomy with debulking surgery then 6 sessions of Carbo/ Taxol given every three weeks over 18 weeks...
I went into remission for 21/2 yrs ......but I would argue that I had a recurrence for well over 12 months before It was taken any notice of ......I have since had 6 more sessions of Carbo/ Taxol and I am in remission again ...and have been for 10 months even though the oncologist didn't think I would go into remission..he tells me I still have a progressive disease
Thanks, the questions was simply what treatment other high grade serous people had just in case anyone had something that we could discuss with our Onc.
Very happy for you that you have had remission even though as you say its a progressive disease.........clearly because carbo/taxol worked (in a sense) for you before they used it again and touch wood it at least lasts 21/2 years again
that is what we are hoping to find, something that gives my wife a decent period of time out......
Thanks and good luck
One possibility is the PARP inhibitor, which is aimed at BRCA ovca but is also thought to be suitable for high grade serous.
For example:
A trial looking at a new drug called rucaparib for breast and ovarian cancer, in people with BRCA gene faults (PH2/052) - this CRUK trial is also open to women with high grade serous ovca, This trial is being run in Birmingham, Glasgow, Leeds, London, Manchester, Newcastle upon Tyne & Plymouth.
My understanding is that treatments for BRCA ovca often apply to high grade serous, so that might be an angle to take with your wife's onc.
Hi, yes i am aware of rucaparib as well as olaparib, but for reasons unknown at the moment our Onc says we (she) is eligible for parp inhibitors. Need to find out why that is i.e is it financial or the trials they are thinking about are not parps....
I know for instance that Olaparib was meant to have had some good ish results for high grade serous, with or without BRCA so that was something that had been of interest to us.
i am a 3c and have just finished my 3rd. round of chemo in 2 and a half yrs. had 10mths remission first time but only 6mths. the second time so i know how you must feel.I had carboplatin and taxol 6 sessions one every three weeks.The second time I had the same two drugs but because I took it back so quickly the 3rd. time carboplatin wasnt an option so I have just finished 18 weekly taxol treatments,They were amazed and said it has worked better than the full treatment of the two drugs combined..Had cat scan today so wont get results for two weeks but ca125 has went down from445 to 23 so I am hoping this is a positive indication and that i get a longer remission this time.good luck.x
Hi are you also high grade serous?........irrespective we are glad for you that you ahve had good result with weekly taxol and hope for continued remission for you....good luck.
I have high grade serous ovarian cancer and was diagnosed as stage 3a 13 years ago. I have been incredibly lucky to have had around 4 years between each recurrence. Treatment as follows:
Jan-May 1999 Carbo/Taxol
Apr-Oct 2005 Carbo/Taxol
Sep09-Feb10 Caleyx
I am not technically in remission as tumors are still present, however they said I had stable disease and they would likely start growing again in about a year. But to be honest, there has not been any significant change in past 2.5 years. I gather that in younger women (I was 29 at diagnosis) the disease can progress more slowly. But have also been told that whilst mine behaves like high grade in the petri dish, it clearly does not behave like that in me. The oncologist did not have any answers as to why that was.
I did get a refferal to Barts to see a professor about possible drug trials in February and he said that since I had responded well to platinum based medicines, there were no trials available for me and that when the time came for more chemo, he would recommend weekly taxol or germ/carbo. Which your wife has already tried.
Under my own research (assited by members of ovacome) I also found the PARP trial for rucaparib that bellabee mentions. I have include the link to the cancer research website as this gives detailed information on people who are suitable or not for the trial. If you have ovarian cancer you cannot have had carboplatin for 6 months prior to starting the trial. I was wondering if this might be the reason your wife is ineligible and if so, then maybe this is something that could be considered now, for use in the (not too distant) future.
Anyway, my onc will not refer me for this trial because she says I am too well. And I notice that you say your wife is well also, so it may be that whilst she does have tumors they are only growing slightly and maybe she does not need treatment yet.
Hi Vicky and thanks for the reply.....today our Onc said she wasnt eligible for parp because that was only BRCA, which of course with HG Serous is not the case. But i didnt argue the point with him, just when we got back we double checked the rucaparib and as you and others have mentioned.....she would fit that trial.
I did, as you mention, notice the 6 month time period, but that would only be 3 weeks later than starting a phase 1 trial anyway, which the ONC seems dead set on her doing.
So we are kinda stuck a bit here, do we just ask for a referral for the rucaparib adn risk annoying our current Onc (who we may need again) or do we do the phase 1 trial and keep the rucaparib in reserve just in case, of course hoping and assuming that it was still open.
My instinct is to go for the rucaparib because its phase 2 and therefore has had some positive results already. Of course it may not do any good with my wife, but then again ditto phase 1 brand new trial.
It would have been a much easier decision if the Onc said yeah we did consider this or that but we feel bla bla bla......instead of saying Not Brca so cant do it....especially as 2 weeks ago when we asked if she was BRCA, he said he didnt know.
Thanks again for yoru response and we will post updates irrespective of what route we ultimately go on. Good luck for the future, you seem to be progressing very nicely, long may it continue for you.
I am presuming your wife was not offered Caelyx (aka Doxil) because it was not available for a good while there, but I have read recently that it is in production again. Has your onc mentioned it at all? I have always been under the impression that Caelyx was the next step once carboplatin is ruled out.
Hi, Caelyx was mentioned a year ago when they couldnt get it anyway - hence gem/carbo. Our Onc has said that after any trial - if it wasnt successful, then we have the option of another chemo regime, assuming of course my wife maintains her decent state of health. Thanks agai for your response
Do you mind me asking what the phase 1 trial is? Please don't answer unless you want to.
You are in a very difficult place right now. It is scary to lack confidence in what a doctor is recommending. However, I do feel that it is the onc's responsibility to give your wife (and you) confidence in the decision that is ultimately made. Personally, I would ask to see him or her again, explain your doubts, play the dumb card if necessary and ask for it all to be explained fully to enable your wife to make a decision that she is comfortable with. Wishing you all the best with this, and please let us know how you get on.
He hasnt said what it is at the moment, he has something in mind but needs to check on some things first - double check scans adn bloods..... Problem is although we have the utmost confidence in his ability, we are not sure if he is just dead set on a certain course, and of course why did he say rucaparib is only for BRCA, when he just has to know that if you have HG Serous - it is for that as well. That is what makes me think he is dead set on this new trial he is going to 'design' - which of course may be the biz.
Another problem is he isnt a good communicator, well a communicator full stop really. He doesnt like you aksing questions, or that is certainly how it seems,
If it was me i would definitely go the rucaparib phase 2 route, but i shall see how my wife feels in a couple of days after she has thought about it a bit more, we dont have a rush either way at the moment.
In my head phase 1 is the last throw of the dice, and i just dont think we are there, or anywhere near there at the moment.....i hope!
I have to say that I found a really unhelpful attitude from my medical team. Despite me taking the printout with me, highlighting in flourescent yellow all the reasons I thought I was suitable for that particular trial, they did not want to know. The first couple of appointments they completely poo pooed the idea, not even looking at the paper. One doctor actually said to me 'Why do you want to do that, they don't even know if it works.'(!) The third time I was not accepting 'no' for an answer. My onc (who has been treating me for 13 years) said I wasn't BRCA, I pointed out you did not need to be and produced another article, courtesy of Charon from this group, stating most cancers could be brca like. My onc conceeded that she felt this would indeed prove to be true. She then said I was not sick enough and I pointed out that this trial requires a performance criteria of 0 or 1, so I was not too well, in fact, by delaying it I could miss the boat by becoming too ill for the trial. She replied 'yes, its tricky...' tailing off because she evidently did not want to discuss this with me. She finally said that she 'could refer me if [I] wanted... ' (pregnant pause whilst she glared me down inferring that she really did not want to). She went on to explain that there were lots of people in a worse position than me and there was limited space on the trials and she really did not think that I was a suitable candidate due to not being BRCA. Like you, I did not actually say its for Serous High Grade Ovarian Cancer too, I just said its for advanced ovarian cancer and she said that is not me.
I still don't feel that she has really listened to me, or that I have been given the opportunity to get my point across. I really do not understand why they are so dismissive but presume that it must be that they have a lot of patients and limited resources. Also, the fact that I am worrying about this, rather than complaining about pain, or a bowel obstruction or ascites or any of the other horrible things that lots of us are going through, means I am probably not that bad. Its a bit like triaging when there are multiple casualties; you ignore the ones who are screaming and concentrate on the silent (who are likely to be in more need).
I deffinitely think some Doctors just expect us to let them make all the decicions without questioning them (this must make their life more easy) A friend of mine put it to me that they have spend many years in training to get to where they are today and so it must be frustrating to them to try and explain all that knowledge to us over the course of a 10 minute appointment. But having said that, I think maybe they are not aware of all the options and that if you don't ask you don't get.
So, my advice to you would be to get your print out, get your highlighter and ask again why your wife would not be suitable for this trial. I really do wish you the best of luck and will be very interested to hear what response you get from your team.
Unfortunately our Onc is also one of the 'i do it my way brigade' and doesnt even like engaging is conversation. Annoying the Onc before that was much the same and openly told us that nothing would work......when we said that gem/carbo combo seemed to have some success and could we try that, told us no because it wont work....well depends on the definition of work, had we just walked away, like i am sure some may have done, i have no doubt my wife would be dead now.
But we got a referral and the current Onc to be fair said lets try gem/carbo....and 10 months later we are still here and certainly no worse off, and perhaps better off than we were 10 months ago.....as far as symptoms adn pain go.
I have a couple of printouts ready including one from a trial team saying that the parp inhibitor suits my wife.....but all said and done my wife is wary of upsetting our Onc, and whilst i dont want to, i guess bottom line is i dont care if i do, as long as the end justifies the means - and i have her for a bit longer.
I'm also HGS 3c diagnosed in Mar 2010. I've had the op, then all the usual chemos plus Avastin but nothing worked at all. I'm Now on Leterazole having turned down a phase 1 trial choosing quality of life over being tied to close hospital monitoring. The Letrazole is a hormone therapy used mainly as a breast cancer treatment that has been shown to have some sucess in women like me whose tumours are oestrogen receptive. My tumours shrank after 3 months which was a complete surprise. It won't be a cure for me but I have taken a step back from the precipice. I'm due a scan next week, I will be grateful if there's been no change, hopefully I can live with that. Hope this gives you something. To discuss with your Onc. I wish your wife well, you must be a great support to her.
Hi and thanks for responding....we are waiting to see if my wife is oestrogen receptive, that is one of the tests they have done during the testing of the original tumour. I do understand why someone may turn down a phase 1 and to be honest its not a route we really want to go down at this stage, but our Onc is only talking about that right now.
I always thought he would say this or that or maybe this.....but no, just this. So i am currently trying to find potential alternatives whilst we are waiting for a report from him on what trial he suggests....then we can hit him with other stuff and see whats waht.
My gut instinct is my wife will stick to what he suggests because she is not a 'rock the boat kinda person'.......well they say opposites attract :)...........but we shall see.
We are so pleased for you that Letrozole is giving some positive results, and we are in the same position as you, we know there wont be a cure....but hey, who knows a good long period of remission may be just around both our corners.
Take good care and good luck. Please keep everyone informed how it is going for you.
Hi, just an update really.....we got to within 3 days of a starting a trial but got pulled because of blood test results.....so now going to start Caelyx very soon, which i believe has been of good help to many, so fingers crossed it helps my wife.....
Hi I do hope everything works out for you both ...I am sorry about missing out on the trial...I admire the way you have handled things..you both must be exhausted..it does seem like a constant battle...thank you for the update and wish you the very best
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