Tamoxifen now being suggested : is there any empirical evidence ? Can anyone offer anecdotal ? Anyone out there , on this ?
I have had the bugger return every six months and know what I am dealing with ( I think ! ) , but wonder if anyone has similar medication offered ? I would be really grateful for all thoughts on this .
Thank you all .
Dear Angeladale
You wrote such a lovely, generous comment on my blog yesterday and reading it I had no idea how hard the last 2 1/2 years have been for you. I've heard the Van der Burgh Regime is a really tough one but good that the CT scan shows it's been worth it for you. You must be a very strong person.
Are you in a centre that has lots of clinical trials? I really was enormously heartened by the advice at the Royal Marsden. They told me there were a lot of options and one trial involved a chemotherapy regime of carbo-platin and taxol followed by PARP inhibitors. It was for BRAC positive as well as negative women.
I'm not suggesting for a moment that this is an option for you but I just wanted to give you an example of how trials involving patients can give us more options than standard treatments.
I do wish you luck if you decide on the Tamoxifen. I've read comments which make me think it can be very effective for some of us.
Sending love and hugs. xxxx Annie
Yes , the last two and a half years have been relentless , carboplatin 'plaxitaxol / then carbo and gemcitibane / then cispaltin /etoposide !
To quote the docs , thie irony is that I am so healthy ! ( and yes strong, I suppose ) , stocky and stoical .
Annie , I am in a very good place , UCH ,London , with wonderful people and trials galore ; none suitable for me , but I cannot fault either Barts , nor UC. I know how lucky I am , in that living in London , I have some of the best available . That you have to trek to the Marsden...and as I've said before , another fight is to Keep the NHS .
The input from everyone re:Tamoxifen , has made me feel much more comfortable that there might be a maintenance / holding possibility . This will be decided , I think , after next CA 125 ...
and we go from here ! One day at a time x
Angela
Dear Angela
I think we might be quite similar people as one of the comments this week was that even though I look and feel incredibly well I really do need chemotherapy again. I'm not arguing with that!
I'm so glad you're pleased with the NHS. Me too. I'm a great fan but I've discovered I'm not such a fan of politicians who aren't giving the NHS a chance. It's a wonderful institution. I had an opportunity to take a look at the system in the US a couple of years ago when my brother suffered a near fatal stroke in Tennessee. They had all the treatments you could think of and I felt many were just being done because there was a pay-cheque attached to each item.
My campaign is to raise awareness of what goes on in Wales and the task is done now the BBC Wales programme has aired the problem. I'm now in England and I see transparency, patient involvement, choice and equity. I'm happy to be an English Patient!
I'm so glad you feel relieved from the comments on this thread. It gives us hope and is a wonderful resource.
xxx love Annie
Hi, I can speak with experience regarding the Rotterdam and Tamoxifen. I understand the Van de Burgh and the Rotterdam are pretty much the same in that it uses Cisplatin administered over 13 hours and a daily oral tablet of Etoposide. Sandra endured this as a 2nd line treatment in 2010. Cisplatin is gruelling because it is about 4x stronger than carboplatin and some treatment centres prefer not to offer it. I can say it gave Sandra her longest period of remission of about 12 mths. All other regimens were less effective.
She is now on the Tamoxifen having been told there are no further chemo treatments available and trials were never an option. She is being treated at the Christie by eminent oncologists. She has coped very well on the tamoxifen, no side effects to notice, not even the hot flashes we were told would be common. After stopping chemo 3 mths ago and after 7 weeks of tamoxifen her enlarged lymph glands are showing sign of shrinking and her CA125 has dropped for first time since April. Only a scan due in 3 weeks will give us any confidence of the effectiveness of the treatment.
I want to touch on the subject of trials, those who sign up to trials only approx half actually receive the trial drug, the other half are used for comparison so for those who wish to move home or travel long distances to receive a trial treatment should be aware of the criteria. Love Paul xx
I am just coming to the end of the Van den Berg regimen ( 1 cycle of cisplatin and 6 cycles of etoposide ) yes the regime is tough , especially the cisplatin .............. but the cisplatin is really effective, causing the ca 125 to plummet and the tumour to shrink . The etoposide , less so but it works OK as maintenance. Ca 125 has continued to go down but slowly. Though tough, this regime is doable , with the reward of being effective . Yes , like Angeladale , my cancer (which is PPC , not OC ) makes it's presence really felt every 6 months , thus demanding more treatment. It is not so much that it keeps coming back , rather that it never goes away . (No drug yet has managed to get my ca 125 below 250 ) A scan in a week or 2 should clarify how effective this course of treatment has been. x Sue
I take my hat off to you Suzy for getting through the Van de Burg regime and I'm keeping my fingers crossed for you that the treatment this time has had a positive effect.
Sending lots of love xx Annie
I wish you lots of luck in your next round of treatment x Sue
Yes ,I think we might be in the same ., if not , similar boat ; thank you so much ,for your earlier , detailed reply .
I'm only beginning to think of the etoposide as having been maintenance , rather as a package with the cisplatin ; in the end I don't suppose it matters , as long as we can hold it all back for as long as possible ; i.e. long bouts of Chemo, rather than tablets at home , which is preferable to trips to hospital .
I am at UCH in London , a centre for trials and indeed , excellence . At the moment , I am not suitable for any , but I am very , very fortunate having the input that I am getting . I wish you all the best too . Angela
Paul , thank you for this detailed reply ; I know that the Christie is outstanding and recognize only too well what Sandra has been through ; No : trials not an option for me either ; but I am at UCH in London , know women on trials , and they are heroines as well as of course , desperate and anxious for their own lives , as well as if you like , the cause .
Your reflection on the Tamoxifen has been really helpful and it's wonderful that Sandra has responded to it in a positve manner after the years of gruelling treatments which she has undergone , quite a remarkable history of survival ,actually .
My very best wishes to you both .
In response to Paul's comment about trials - I realise the need for comparisons, but there are sometimes situations where they can promise you the drug. I'm taking part in a trial testing the effectiveness of Arimidex in certain situations, & was told from the start that in this trial I would definitely be offered the drug if I took part.
Dear Di16, I'm glad you've posted this because Paul's comment could be a bit hair-raising if you are in the process of considering a trial and abandon the idea because you think you may not receive a particular treatment. I confirm the trials I discussed at the RM were not randomised and that I would actually receive the treatment we were discussing. Equally in my current situation I think I have the time and energy to take part in randomised trials if one was suitable even if I were to remain in the control group. Once you have signed up for a trial and it's been a positive experience you're very likely to be offered more.
I sit on the S London Cancer Research User Group and it is depressing to hear how many trials cannot be filled because people have misconceptions as to what trials involve. We're currently training ambassadors so we can meet patients referred to a trial and talk about what they entail. They can be a very positive experience.
xx Annie
Regarding clinical trials - If you are on a phase 1 trial, which usually involves a small number of participants, you will get the trial drug although the dosage may differ. With phase 2 and 3 it is likely that you will either get the trial drug or a placebo. Hope that clarifies the situation
Ruth Payne
Ruth how can they give placebo's when anyone has trials it should be the real deal and if they improve great. Most people are going to opt for trials when all else fails. Its awful to be used as a guinea pig without the thought your not getting the real deal. Of course the placebos will do nothing pretty point less if you ask me.
Regards Jenny
No one is disadvantaged because the half who receive placebo are getting standard treatment, the other half get standard plus the new drug. A friend of mine opted for a trial for weekly taxol plus a tablet. She did,nt get the tablet, she only recieved the standard 18 weekly taxol, she was disappointed but her taxol has been extended first to 24 weeks and again to 36 weeks. She is about 8 weeks from completing the 36 weeks. She felt opting for the trial became inconvenient due to the extra blood tests, ECG tests, scans when she is recieving just normal taxol. This was my point about trials, if you live local great, if you dont then it can become problematic. Thats just my opinion folks xxx
Hi angel I have been started on tamoxifen recently. I have been told that in some cases can keep things stable for a year or more. Unfortunately does not seem to be doing the trick for me but hope you have good results
Ally x
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