Well I am finally writing the thing I hoped I would never have to do. On my 4th canceranniversary plus one day I had a scan and the results were not good in so much that my cancer is progressing. My long suffering oncologist has tried me on everything available and it seems that I am now chemo refractory.
I have had all the drugs agailable including 2 years on Avastin and a whole year on weekly Taxol. I had 6 months on Myocet (caelyx equivelant) and even retried Carboplaitin alone after a 2 year break not to mention the normal frontline treatments of Carbo/taxol then Carbo/Gemcitabin.
I had hoped to have another bash on Caelyx but due to a build up of all the drugs I have been on continually, without any remission, the contractability of my left ventricle has reduced and so my oncologyst will not risk anymore Doxorubisin (Caelyx) type drugs which are known to have adverse effects on the Left ventricle contractibility. Also, although very rare, Avastin can cause problems with the heart, so all in all my poor old body which has put up with so much treatment not to mention three major operations, is finally trying to tell us all something. I did also have a short course on Topotecan but that did nothing for me so it was quickly ditched.
Anyway after being told the final news last night I am now facing up to the fact that this terrible cancer has beaten me! But I do not believe it as actually in spite of everything I am still very well and lead a normal life looking after one of my grandchildren age 2 years, twice a week and running my own equestrian centre, well partly now as my children have taken most on for me, but I still do the accounts etc.
Anyway the one thing I did salvage from the meeting was that the progression was very slow and because I am so well my oncologist is putting me forward to look at three clinical trials in different parts of the country. I am going to make a trip to Glasgow where there a suitable trial, something to do with a virus I think, then there is Mount Vernon in Middlesex and my local at Christies, Manchester. Think we are going to be doing a lot of travelling but if it will extend my life I will travel the world.
My question is, does anyone know anything about any of these trials or indeed has any experience of any trials at all as this is new ground for me so I am hopeing for some positive feedback to latch on to at this stage of my difficult journey.
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chezgravel
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Dear Chezgravel, What an extraordinary post. I am in awe of your courage and intelligence. I can only say that the cancer has certainly not beaten you and I don't think you're about to give in.
I have a huge admiration for your approach. It's so pragmatic and so well thought through. I'm delighted The Christie are looking at the best clinical trial for you and that you feel you are able to travel. There are many challenges to that but I just know with your tenacious spirit that you will ovacome them.
What trials have been recommended to you? The Royal Marsden have suggested a PARP inhibitor trial for me but I was given advice by a young oncologist who was new to the rotation last meeting and she wasn't able to tell me more. Looking through their trial data I'm assuming the trial they are looking at for me is the Ariel2. I hadn't thought of a canceranniversary. I think I'm coming up for my fourth too.
I wish you luck. You have all the other qualities to make a success of this latest challenge.
You are such a lovely lady. I have often read your responses to other letters and you offer so many positive thoughts which is so so good when you feel you need someone to talk to.
Thank you for your lovely words although not really deserved. When in our situation you do not have much choice, live with it as there is no alternative.
I read all the happy posts from thoes who have had this dreadful PPC for years and who go into long remissions periods with total admiration and wonder just why I could not be that fortunate but then I read all the very sad short lived experiences with sadness and think I am very fortuante to have had 4 years and even though it has been very tough I am still here and I am being offered another lifeline with the trials option.
I try to count my blessings in that I am still well and actually have never had a very bad reaction to any of the chemo so at least I had a chance for it to work, it just was not able to do the job for some unknown reason.
I so love my little grandaughter that I help to look after and she gives me the inspiration to keep fighting as originally I did not even think I would see her let alone look after her and also just 2 months ago my oldest son of 45 and his wife had a baby girl after five years on IVF so I am so lucky to have met that baby too.
Not sure what the trials are about I was hoping someone on this site would be able to enlighten me. What is the Ariel2 trial. Is that at Sutton as I may look at that too although I am BRCA negative so do not think that PARP inhibitors are of any benifit to me. My oncologist did suggest The Marsden but because of distance thought we would not be able to do it although I know he will refer me so we can at least go and discuss the options and make a decision based on the trial and it suitability. I live in Shropshire.
What a fortuitous response. The Arial2 trial is for BRCA Negative Women. They've discovered something they called 'BRCAness' and given there must be many undiscovered BRCA genes they're trying out PARP inhibitors for women such as you and I as we may actually have the undiscovered BRCA mutation and may benefit from PARPS. There is some thinking emerging that women who don't respond so well to Avastin may do well with PARPs and vice versa - that comes from Professor Iain McNeish at Glasgow. My suggestion of the Ariel2 trial is just a shot in the dark. I'm sure your clinician will be able to explain which trials they're thinking might be suitable for you.
I don't know yet whether the trial would be in Chelsea or Sutton but, like you, I'd be prepared to travel wherever there is a suitable trial. You will also be able to claim an allowance towards your expenses. Wouldn't it be fun if we were to meet up.
I assumed you attended The Christie but that's a long way from lovely Shropshire. Do you attend a hospital locally. A friend who has PPC and has recently referred herself to The Christie was told she should be seen by a bigger centre because of the complexities of her disease.
Let's hope there's lots more hope - for you and me and all the others. xxx love Annie
I have not actually been to The Christies yet. I just met up with my oncolgist last night and he was offering suggestions as to where he would refer me and he actually said that he would refer me to Glasgow, The Christies, Mount Vernon and The Marsden and that way I would get a wider range of opportunities and ideas. I have been treated in Birmingham for the last two and a half years so have had to do a lot of travelling anyway but it has been so worth it to have had such a broad minded, forward thinking oncologist so travel is not something that would get in my way if there was a suitable trial.
It would be strange and a lovely thing if we did meet up at the Marsden. I would so love to meet someone else who totally understands what I am going through.
We will keep in touch. Please let me know when you are going to the Marsden to check out the trial and I will do likewise.
It may well be that my PPC will be too complicated for The Christies as well as I seem to have more complications than anyone I have ever heard of. My oncologist thinks that of me too!!
Keep in touch.
xxx
The great thing about the clinical trial set up at the major cancer research centres in the UK is that they try to build a portfolio of trials at different phases to run alongside all the standard chemo options which means that there is almost always something that can be offered to each individual patient, whatever their circumstances. This was explained to me once by a senior clinical trials nurse, and I think it is a fantastic ethos. What good news that there are three trials for you to consider.
That is very interesting about Mexico because I have connections there as my sister and family lived in Monterrey for 34 years so have been often and her daughter in Law is in fact Mexican and their family still live there so it would not impossible to make contact. I will indeed look up Dr Castillos. Thank you very much.
Just a quick response because I am just off to work. I am just about to start another phase 1 trial at the Royal Marsden. This will be my fourth trial drug. The first trial I was on two years ago worked for nearly a year a shrunk my tumours down to next to nothing. They eventually grew back but it meant a year off chemo and the trial drug had barely any side effects. Some of the trials have been less successful but they have kept me going. You are very well looked after on the trials. Must go now but please ask me any questions - happy to talk!
A very big thank you for letting me know your success with the trials. It is so so so good to have this information and gives me a positive feel about my next step.
With all these letters I can begin to feel my confidence growing again.
No Cancer you are not going to beat me or all these other lovely ladies
Your resilience is amazing and inspiring. And it is good to hear that you are able and willing to explore all the options. I have had one visit to the Marsden, I live in worcestershire, looking at a trial for platinum resistant disease. But because disease is not progressing at present, oncologist doesn't want to see me! She didn't put it quite like that. However, in our conversation I asked her about hormone therapy as I had heard/read a little about it. She said it would be appropriate 'when you can't take anymore chemo'. Tamoxifen was the therapy I have heard about.
And then there are the many trials mentioned in well informed replies here for PARP inhibitors, which I understand are for those with platinum sensitive disease. How to get genetic testing done if no family history?
Thanks for you comments. I am platinum resistant/refractory, and I am BRCA negative but I understand that some of the trials using PARP inhititors are for other types of gene mutations and so they are now offering this to BRCA negative patients as well, but you may be right about the requirement for platinium sensitivie bit which would make me inelegible of course. Annie seems to know quite a bit about this so read her post to me. As to not getting the test because there is no family history, my oncologist is campaigning to get all Overian/Breast cancer patients checked out as he says with tongue in his cheek - "Daddy may not be who you think he is!" I see the amusing side of this but I think realalistically there can be unknown factors about heredity, for instance someone in the family may have died of something before they got cancer if that makes sense, so he believes that everyone should be offered it if they want.
So glad your cancer is silent right now - wish mine would take the hint also!
Hi. Just wanted to say Hello and good luck with whatever trial you decide upon. I know exactly what you mean, some people get years of remission, others get very little. One thing we all have in common though is Hope!
With clinical trials one thing is certain you will be closely monitored and this in itself will be reassuring. My friend has just been treated for Stage IV at the Christy. She has had great results and they are going to keep a very close eye on her. She talks very highly of that hospital and its staff. She had to travel from Belfast for her treatment which meant a lot of flights and a lot of expense for her as she had self referred but it paid off for her.
All the big cancer centres run clinical trials and this can only be good as with each one they are learning more and more about this horrible disease. Enjoy your travels to each of these centres and let us know how you are getting on.
Thanks Ann for your imput here. It is good to hear of someone who has actually done a trial so pleased that your friend has had a good experience at Chrities and to travel from Belfast is indeed an inspiration in itself. We are also going to go over the boarder to Scotland to try or talk to the clinic in Glasgow - so glad they did not go for independence otherwise they may not have let me in!
I certainly will keep everyone posted because I think it is so important to help with research and to inform as many as possible so that the next generation will not have to put up with all the indignities of this horrible diesese.
They are very thorough in checking & supervising those who are considered for trials, & will only offer you trials that are considered to be suitable for you. I was on a trial with anastrozole (one of the hormone tablets) for 6 months last year. This summer, it was suggested I go on the Tax-torc phase 1 trial at Addenbrookes (my nearest big cancer centre), & went through all the tests they considered necessary. Then, on the day I was due to start the trial, my fasting glucose was too high (I'm also diabetic) & they told me I was no longer eligible. They told me they had another phase 1 trial, but it would not be suitable for me either. Fortunately, I'm not completely out of options yet, they were able to start me on weekly Taxol 2 days after failing the trial test.
Thanks for your imput Di. Must have been gut retching to be turned away from the trial when you were all ready to go for it. I have an awful feeling that with my luck something like that will happen to me!
Anyway reading about the trial it does sound like me so will ask my oncologist to refer me there also as I feel the more I go and look at the more chance there is that I will find one that I can manage to get on.
I really appreciate your help. Good luck to you too.
I attend Mt Vernon and can't praise them highly enough for throwing options on the table for me every time! I'm in clinic next week to possibly start the METRO-BIBF trial..it's oral meds this time so watch this space..good luck to you chez g
Thank you for your imput also. I will have a look at the trial you mention as I know my oncologist is refering me for a trial at Mount Vernon so it may be the same one.
So glad that the experience at these centres seems to be consistently good so that is nice to know.
I am so grateful for the information as I was going in totallyh blind and did not know where to start really.
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Now odd caelyx
