Have treatment now or what for clinical trial?

Hello,

My mum has recently had a recurrence (3 small tumours, around the pelvis and bladder) after only a 5/6 month remission. It is her first recurrence. She is 64 years old and was diagnosed 3a in October of last year.

She has been in considerable pain over the last few weeks, and has decided to undergo weekly Taxol, which she is due to start next week. She was also offered CAELYX as an alternative, but she decided on Taxol as people seem to agree that this might be more effective.

We asked her Oncologist about possible clinical trials and we were referred to one at Barts hospital (UK), involving weekly Taxol with SARACATANIB.

We are really anxious and worried though because to go on the trial means delaying treatment (possibly by 2/3 more weeks) until she can be seen at Barts and assessed for the trial. She would not qualify for the trial is she started the normal Taxol regime (which she is booked in for) at her normal hospital (Southend).

Do you think it is safe to wait for the possiblity of being included on a trial? What are the risks? Has anyone heard of SARACATANIB, and what is it like? Apparently, it is a phase 2 trial.

If anyone can offer any advice as to what we should do, it would be greatly appreciatted.

We are desperately worried as to what decisions we have and what we should choose for my mum. Her Oncologist has been very helpful but at this stage it is really up to my mum, but she is very worried about delaying treatment.

Many thanks,

Jon

16 Replies

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  • Hi Jon,

    Sorry to read of your Mum's need for more treatment.

    I have little to offer in terms of experience, but it does occur to me that, if she waits for the trial, she might end up in the control group and therefore not get any treatment. I stress; I do not even know if this is a possibility, but it seems sensible to me to check this first, as it could mean she waits and then gets a placebo anyway.

    Just a thought.

    Very best wishes to you both,

    Isadora.

  • PS: I've just had a cursory trawl through the results of SARACATANIB trials in ovarian cancer on Google so far, and they don't look particularly compelling.

    It might lead you/her to go for the local and immediate option.

    I xx

  • Thanks so much for your reply. The trial option would be Taxol and Saracatanib (or placebo) and the immediate option would be Taxol alone.

  • Hi Jonthreep

    I am on weekly taxol. Have had 10 of 12 weekly sessions may have 18 if the tumours I have continue to respond as well as they are doing at present. I have had minmal side effects, slight abdo pain and tiredness all of which are easily managable. Isadora's advice sounds very sensible. you need to way up all the options wih sound information. Do you hace a gynae nurse specialist you can talk it over with.

    Best wishes soapsudsx

  • I'd always go for the immediate treatment. I think delay is a bad thing. My Mum never made chemo as she died before her first appointment, the earliest they could offer was 2 weeks away and she was too ill. I hope you Mum responds well to the taxol.

  • Personally I would wait a few weeks to find out all options. In the greater scheme of things a few weeks to get potentally a more effective treatment or one not availble on the NHS would be worth it. I don't know anything about this drug through so can't comment but I've just started in the mEOC trial and even the placebo is the same a standard NHS monitoring- it would be highly unethical not to give someone any drugs! You get better monitoring in trials, more scans etc, I was told people tend to do better whatever drugs they have due to this -maybe reoccurences are picked up sooner? In my trial I know which group I am in and which drugs I have and I can come out of it at an time if I or my oncologist think it is not the best option for me. Luckly (I think!) I am not in the standaard group and am receiving chemo drugs that are not yet licenced for OVCA).

    My chemo was delayed due to the trial paperwork and tests by maybe two weeks. It's started exactly 6 weeks post surgery.

    Hope that helps at little and wishing your mum the best of luck x

  • Just has another thought. Can you find out who is the lead investigator of the trial and speak to him or her about eligibility? Try though their secretary if they are NHS based. Alternatively the clinical trial teams at your local hospital might be able to advice you.

  • Hi

    Just to add that if the trial is a Phase 2 trial all patients get the full range of chemo. It's on Phase 3 trials which are much larger that you don't know whether your getting the trial drug or not. So it would be worth checking which Phase it is. Also to add that Caelyx has performed brilliantly for me with virtually no side effects (after two carbo/taxol full courses both part of drugs trials which also worked well) so tell Mum not to worry if in future Caelyx might be an option.

    Good luck

  • Hi

    Just to add that if the trial is a Phase 2 trial all patients get the full range of chemo. It's on Phase 3 trials which are much larger that you don't know whether your getting the trial drug or not. So it would be worth checking which Phase it is. Also to add that Caelyx has performed brilliantly for me with virtually no side effects (after two carbo/taxol full courses both part of drugs trials which also worked well) so tell Mum not to worry if in future Caelyx might be an option.

    Good luck

  • HI,

    I think we all react differently to chemotherapy drugs, some will work for some, whilst not for others.

    I am on my second drug trial here in Spain but I am at at different stage of treatment to your Mum, although my ovarian was classed as 111c. I have gone through so many chemotherapy drugs the trials were the only option. I can only go on the opinion of my Oncologist which is that he gets the new drugs in me as quickly as possible. He knows personally Prof Kaye at the RM, who I visited in Jan 2008, and they both do think differently. Whilst the RM gave me months to live and no treatment, my Onc.went straight in there with trial drugs much to Prof Kaye's astonishment. I am still here to prove Prof Kaye very wrong !

    From my personal point of view I want the chemo in there as quickly as possible, as I know whilst time is passing the tumours are growing. I know here I would be on some sort of treatment whilst I was being assessed for trials.

    I find it very hard for an Oncologist to leave it up to the patient, I have never been faced with this problem, I have always been TOLD what is my next line of treatment and I trust my Oncologist sufficiently to know that he is doing the right thing for me.

    Good luck to you and your Mum.

    Anna x

  • Hi

    I feel that your mum has a lot of options available from conventional treatments so she does not really need to rush to a trial. My understanding is that starting treatment immediately upon recurrence does not improve probabilities and in fact they want to delay treatment as long as possible. A UK patient once informed me that they wait until it is 1cm and for sure here in Greece they waited a few months before starting again. I am a bit surprised they want to do Taxol so soon after 1st line which I guess included taxol. Or may be it did not. So if she feels strongly about a trial a few weeks will not make a difference I think. Have you considered a second opinion?

    Having said this may be it is best to go with her oncologist's advice.

    By the way I have no medical background but have gathered information as I have and still am on chemo for 3 years now. ( I recurred 2-3months after 1st line chemo ).

  • Thankyou all so much for your advice, and for sharing your own experiences. My mum has now decided to go ahead with weekly taxol, and not to pursue the option of a trial right now. In fact, the Dr at Barts who was recruiting for the trial said that she should probably go ahead with just taxol and avoid any further delays, as she is now in quite a lot of pain. She starts treatment on wed. Your advice and feedback has been of great comfort. Thanks again x

  • Hi Jon

    Just seen this question after a few days away. I'm sorry that your Mum has been given extra aspects to decide upon at a time when she will just want to get on with getting better. I'm the local co-ordinator for Ovacome in your area (a voluntary job after I retired). I live in Hawkwell, near Southend. I had Ovarian cancer in 2002 and was treated in Southend. I also go regularly to the support group there which is held for women and their families on the first Saturday of each month. It may be good for your Mum to come along when she feels up to it again, it's a lovely group of people. It's run by the specialist nurses, Emma (on maternity leave at the moment), and Liz and there are quite a few of the gynae/oncology team there. Or possibly she already goes there? The specialist doctor team are very well-respected. I have only had praise for treatment, follow up and support for ovarian cancer. I hope your Mum is feeling more secure about her treatment decisions now, there are so many things to think about when she is at this stage in her diagnosis. Most of all keeping calm and having a positive view of the outcome. If you, or she, wants to have a chat with me my mobile number is 07711887410. Send her my best wishes. I hope that her treatment goes well. Who knows, maybe we'll meet up some time at the COPES group.

    All the best,

    Wendy x

  • Just spoken to your Mum and we shared quite a few words. You are doing a great job in supporting her, by the sounds of it! Have you a laptop where you can show her some of the inspirational stories on here? It may do her good to read some of the chemo stories and how quite a lot of women have rallied and responded after having 2nd or 3rd line chemo. She was telling me about a pill that may be available soon, but she couldn't remember what the name was, said it begins with "A", do you know what it is? Sounds good.

    All the best,

    Wendy x

  • Hi Wendy. She was talking about Avastin, which which might become available on the NHS early next year.

    Best wishes,

    Jx

  • I know they are doing trials with Avastin and Ombrabrulin at the Royal Marsden in Sutton as a friend of mine is on those. Avastin, to my knowledge, is not registerd by the European Medicines Agency for the treatment of Ovarian cancer, put me right on this if I am wrong please. It certainly wasn't when I started treatment with it in Jan 2009.

    Other ladies who have asked their oncologists about this treatment have been given every excuse under the sun as to why it is not given.

    Initially it has to be given with another drug, I was on it for 2 and 1/2 years with a daily pill called Cyclophosmide. Due to a rise in the tumour marker I am now on Avastion with Carboplatin and due to have my 6th carbo next week. As the scans are good and dependent on the ca 125, I hope I will then continue on Avastin alone as maintenance treatment.

    I get so angry when I know Avastin does work for a vast proportion of ladies and that the British government puts other priorities before peoples health.

    Anna x

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