Not posted for a while, had a break from the site and just answered a few questions when I thought I could help. However got confirmation from a scan that it is back. Had 13 months without treatment and being really healthy , happy and well. They did warn me it probably would come back, even though I didn't believe them! I think I deal with it best by being in denial and burying my head in the sand, its my coping strategy and it actually works for me.
Symptoms were rising CA125, bloated abdomen and oddly having much thinner, finer dry hair and nails, anyone else had this?
Onc suggests next chemo (3rd line) should be the same combo as last time which was carbo/caelex as it worked really well for me. Interestingly he commented that in his experience caelex works particularly well for women like me who have the BRCA 1 gene mutation.
He also mentioned I would be an ideal candidate for Olaparib, the parp inhibitor, if it had been approved for use in the UK, however he did mention a trial or a compassionate application to the NHS drugs fund. I will have to find out more about these later.
On the plus side I am in a much better position health wise this time than I was last time I started chemo (following 2 major surgeries in 2 months) and the side effects last time were not too bad.
I intend to stay around for a very long time yet and if that means more treatment then bring it on. But its still not fair!
Love and best wishes to you all
Brenda xx
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MaggyH
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I am very sorry to hear that it is back. I hope your next round of chemo gives you a longer break. I wonder if you would mind sharing some personal details with me. I will do a post of my own as i have had some news today. But as you are a BRAC 1 patient, you may be able to give me some rays of light.
No problem, if you look on my profile there are more details of my history. If you want to know anything more specific please send me a personal message.
Just looked at your profile. You really have been through the mill over the last 3 years. It is good to hear that BRAC 1 patients respond well to Cayelex as that's what's next for me.
I'm sorry about the reason you're back but welcome all the same. You've done well to have a good long break and I hope it's set you up for any further treatment. Will you have to start straight away or are you on a watch and wait for a while?
I hope Caelyx and carbo-platin works well for you this time round. I started my third line of chemo at the end of May. When I first heard I needed more treatment my heart sank and the hospital gave me a little holiday, then I started to have some tummy pain so in the end I felt I was ready for more treatment and even welcomed it.
Head in the sand sounds great to me. I think I'm much the same ilk. I'm interested in the generalities of the disease and I'm interested in other women but not my own disease. I leave that to the doctors and nurses and do my best to ignore it.
It sounds as though you've had a good summer and you're feeling fit and well. That's a great way to be starting treatment.
Thanks Annie, strangely it feels quite good to be back among old friends again.
I will be starting treatment on Friday this week due to my history of bowel blockages. Actually that's fine with me, now I know its there I just want to got on with treatment again.
Brenda, sorry to read your news but do like your attitude towards the next round. Of course, when you are physically and mentally fitter it helps a little.
I'm sorry to hear your news. You seem to have a proactive oncologist. I can honestly say that's not been my experience. I wonder if an application has been made for the drug? Xxx
Hi Brenda, very sad to hear of your recurrence, but we all know it's lurking in the background just wAiting to pounce. Consolation for you is that you are stronger than the first time and you know what to expect.
Keep your spirits up and stay strong to fight this vile disease.There are so many success stories which continue to encourage and support us.
Hi Brenda, just love your attitude. I believe your oncologist has to apply for the drug for you, I hope you get it. Just want to wish you well with your treatment. Ann xo
Hi Brenda. So sorry it's back but hopefully it will work as well or even better than last time! I'm BRCA1 too but hadn't heard about caelyx being particularly good for brca ladies so that's good news. I am in the camp of being in denial most of the time too, as for me it keeps me sane (although that's debatable hehe!).
My onc mentioned that Olaparib may still be accessible to me too (through compassionate use, I think) but still within the original guidelines of being platinum sensitive and not straight after a regime including Avastin, which I am currently on for maintenance after 2nd line. That would mean if (!) I recurr again, to have chance to access Olaparib I would need to have chemo including platinum and then have no progression for(at least) 6 months following treatment. Is that what your onc said? When do you get to see him next?
In the meantime lots of hugs and good luck with restarting chemo on Friday. Keep us updated.
Brenda. I am sorry you have to deal with recurrence. I too am BRCA1. I am a year out. I work with a psych. Counselor and I asked her how best to live with this uncertainty of cancer. Live in the moment. Which you did. I know you will handle this new event because your attitude will be good. I was interested in your comment about called being good match for BRCA 1. Do you have more info on that? Also, I took trial drugs along with combo/displaying for 6 mos with a parp inhibitor and avastin. I only took three months. Could not handle four drugs. Parp drug was 16 large pills daily for week a month. The potential was to extend time before recurrence by average four months but I don't know haw they can tell. It is only available in trials here. I wish you the very best as you confront this difficulty. Jane
HERE IN THE STATES OLAPARIB IS FDA APPROVED AND THEY PRESCRIBE IT
TO THOSE WHO HAVE OC AND BRCA MUTATION. IT WORKS VERY WELL IN MOST PEOPLE. YOU SHOULD REALLY PUSH FOR IT. THEY USUALLY START PEOPLE ON IT WITHIN 6-8 WEEKS AFTER COMPLETION OF CHEMO. SOMETIMES YOU HAVE TO BE YOUR OWN ADVOCATE. GOOD LUCK IN WHATEVER YOUR TREATMENT.
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Round 3 its back!!!!
Oh no its back after 7 months
please help me I'm so sad
Carboplatin on its own. Stage 1 anyone else?
