HALLELUJAH - THANK THE LORD guess who was given a 4 hour blood transfusion yesterday ? I think my prayers were answered.
The only change in my blood was the platelets had doubled but the haemoglobin was down. The Prof had it all arranged for when I went into his room and I am to continue on Cisplatin and Gemcitibane with with a 30% reduction in Cisplatin. He maintains this is the way forward and he came out with an expression that he has never mentioned before. He says my cancer is BRCAness, I said BRCA 1 or 2 and he said no BRACAness. This is the better ovarian cancer to have ??????? He told me to Google it, have done and it hasn't made a lot of sense so far. After 5 years this is mentioned and I am flummoxed !!
So it is now one mad rush to pack, nothing done at all and also try and just put a few candles and bits up for the animal sitters, the house looks so bare.
My next session is 4th January so I can look forward, hopefully, to as good Christmas.
Happy Christmas everyone.
Love Anna xx
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spanishanna
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I have no idea either.. My Onc wrote it down and said Google it !!! We have a language problem so not quite so easy for him to explain things to me in English.
Have a great Christmas too and pleased about your news.
I have read and what I understand so far is that BRCA1 and BRCA2 are inherited defects (I was tested for these and was negative). If I was positive I would have been shouting from the rooftops, as this type of cancer would have allowed me to take part in a PARP inhibitor trial, which I hear is very successful. My understanding is that BRCAness means although your cancer is not due to BRCA1 or BRCA2 inherited defect, you respond similarly to treatment as if it were. I am confused though, as I think it is saying that in BRCAness you respond well to platinum treatments, and yet I thought you were platinum resistant? I also wonder why he is not using PARP inhibitors in your case?
Obviously I know nothing except what I google and my own experience, so above should probably be taken with a grain of salt.
Anyway, great news is you are feeling better and the path ahead seems clear and confident.
Actually Lizzie this is more or less how I read it - great minds obviously think alike !! I queried The Prof on The BRCA genes as having a daughter this is worrying, although she has already been and been checked and was told nothing to worry about.
Absolutely true I am platinum resistant, but I understand they are using platinum based chemo again as this is should be working on the new cancer cells that are tying to settle to form tumours - this is why they think the cancer marker is rising.
Hope you are too busy having a good time to read this...but v interested in the concept of BRACAness. I don't have the defective genes either but don't like to feel left out so I am going to imagine that I come into that category too.
I noticed in the paper the other day that the share price of the drugs company who make a PARP inhibitor has dropped because they had poor trial results for the drug?! But I'm sure there's a video on the internet of Prof Kaye saying that PARPS inhibitors might be just as successful for people without a defective gene as those with them. Who knows??! We just want as many options available. I'm very glad Anna to hear that your transfusion has made a difference. Yes Hallelujah!! This time of year is all about hope so lets all tap into that.
I am a BRCA1 carrier and have ovarian cancer. I have just started on a PARP INHIBITOR trial. These trials are for BRCA 1 & 2 carriers with locally advanced or metastic breast or advanced ovarian cancer but they also mentioned another ovarian cancer that they think could respond to this treatment. I am at my sons for christmas so havent got my notes with me but i will go on the cancer research site and get the name of it.
It is useful. It is something else I can throw at my oncologist. Many thanks for this. Please keep us posted how the trial goes. Have a lovely Christmas.
I just want to wish everyone a Happy Christmas. It is wonderful to have made it over here and I look towards the New Year with even more determination. Than ks for your link Lizzie.
Just back from a very eventful Xmas in the UK - York hospital for 3 nights !!
Jean I am wondering if you have come up with anything on the name of your drug for me please. I go to see my Oncologist on Wed and something has to be sorted.
I was very ill in the UK, they wanted to put stents in the kidneys as they felt they weren't draining properly. I said no medical intervention without my Oncologists knowledge. In the end they agreed maybe I was right as the kidney results did pick up by the time I came home. I have never been so sick or had so much pain in my life and I have had two children, both at home and without pain killers.
Anyway my blood platelets are low again, it was just a case of patching me up to get me home. We had to miss one flight as I was in hospital so rebooked for Sat.
Never again will I visit the UK and my little grand daughter in the winter. She had a gastric bug that appeared on Xmas Day then a cough that appeared a few days later. In my condition it really isn't worth it with the lousy weather. Here it was wall to wall sunshine !!
Kept meaning to respond to this. Only improvement I think this site needs is to allow you to highlight blogs/questions you are interested in and then for it to alert you if there is a new contribution to it or the option to see contributions to all threads in chronoligical order.
Was quite shocked to read about your antics in the UK. Glad you eventually got back safely. I hope now things are back on even keel with your health?
Don't know if you saw my blog, but I saw Professor Iain McNeish at Barts in London last week and it was wonderful to talk to someone who had heard of BRCAness (my onc's registrar told me it was all rubbish!) and was human and trying to make a difference to treatments with oc.
It looks like my journey is going to be short and intense. 3 lots of chemo lined up now in my mind, with probably not much time to find out which one works in anyway for me. My CA125 is doubling every 4 weeks now and they think about 14% chance of me responding to any of those 3.
On a lighter note, I hope you have seen my NHS wig and my 'I am now bloating dress' in my photo.
While I was in London, we parked the car at the flat in Camden and caught the train from Mornington Crescent. 3 doors down in the 'Ovarian Cancer Action' office. I popped in and said Hi to them, and bought several of the teal badges to give to the people around where I live who have also been touched by oc. They told me Prof McNeish had been at their offices earlier that day. He will think I am stalking him! He was absolutely super. A real dynamic, caring and charasmatic individual. Great to have him on our side.
Yes agree with you on highlighting the posts, they can so easily get forgotten.
Oh yes Xmas, I will not forget that in a hurry. I have to admit I did praise York NHS, the service was far superior than we get in our private system here in Spain. My Spanish GP actually calls Spanish nurses arrogant and having worked in the UK herself has great praise for British nurses.
Sorry to hear your CA 125 is doubling, always an anxious moment waiting for the results, but think positively. I always say 50% a good Onc. behind you with your treatment and 50% positivity.
I did read about your treatment, I hope you respond to it, life is so hard fighting all the time.
Now are you being sarcastic about the NHS wig ?? Difficult to see it on a small photo but it looks good to me, you want to see the ones you get here, dreadful. I bought my own wigs !!
As for my weight, I am shrinking, although I do feel happier being closer to my normal pre cancer weight, although I was underweight then but feel more in my comfort zone being lighter.
Prof Alba must think I am a bit of a mad woman as he looked at me on Wed and said 'who is driving you home' (my hubby is almost blind so doesn't drive). I said 'me of course', to which he looked at me and at the ceiling and tutted. It is a bit hard going, a 3 hour round trip and a full day at hossie isn't for the faint hearted, but I guess having to do these things does keep me going.
I love my NHS wig. I know Margaret let's her grand children play with hers 'cos she does not wear it. LOL! I loved trying them all on and would have had about 5 of them if I could - but they are £100-£200 each so I contented myself with one freebie one.
Driving 3 hours to/from your appointments yourself is very impressive. I would be OK if it was not for the bloating. I am finding it a struggle to walk by the time I get to midday as the bloating seems to get worse as the day goes on. Prof McNeish agreed with my regsitrar it is not enough to drain me, so I guess I will just soldier on. I do walk, it's just a struggle and I look a bit of basket case when I do.
Although it is a downer knowing it is all spiring out of control now, there are positives. At least I can pretty well focus on me with no children, my work is very supportive as are all the health professionals I have seen. Also I have had several excellent months since May, when I thought I could never be the same again. I guess by the end of March I'll know which way things are going. I will never stop fighting, but I am a realist. I am not capable of blind hope when a CA125 is doubling and I am not responding to drugs. BUT as they say, it isn't over until the fat lady sings and I have my next 3 chemos lined up LOL.
My MacMillan nurse says she would be just like me and want to know everything. I hope you saw my Avastin response to your and Nandi's discussion. Also am interested in Nandi's lead in Bristol where they do 'assaying' which I also commented on in the same thread.
Lizzie, the bloating is indeed a problem, although I am finding mine better now that the DR has changed my laxative. The original stuff does encourage bloating whereas the stuff I have now doesn't so I am feeling a lot more comfortable.
You have the same attitude as me, whist I know the o/c is a b....r to beat, I am giving it my best shot, although now struggling into my 6th year I am finding the battle that much harder. The platinum chemo seems so much harder this time round, but I guess my body has taken such a hammering over these past years with all the different treatments. If only I got a break from chemo, that would help.
I have two children, a son, a daughter and my grand daughter will be 2 years old in a couple of weeks time. My hubby, as I have mentioned before, is almost blind, so I have so much to fight for. I miss my kids dreadfully and it was horrible at Xmas for them to see me in such pain and so ill, they thankfully very rarely see this side of my cancer. They usually see Mum on steroids and being quite active.
I have kept both my wigs - just in case - I was never naive enough to know this 'thing would go away, have also kept all my turbans etc.,
I need to know everything that is going on, I can't bury my head in the sand.
Have answered your response to the Avastin by the way.
Lizzie, I have info from my Oncologist today, Prof Alba on BRCAness. I asked him why he has suddenly decided I have BRCAness and his comment was it is the way my disease has developed and reacted to treatments that puts me into this category.
He has printed me a paper off the net - if you are interested it is from the JOURNAL OF CLINICAL ONCOLOGY - entitled Personalizing Therapy for Ovarian Cancer : BRCAness and Beyond - dated 1st August 2010.
No chemo today, my platelets were too low, I breathed a sigh of relief !!
Now, now Anna that just isn't the attitude - you know you want your medicine
Thanks for the update on BRCAness. I have got a few ideas what to do next if/when plan B fails, so now just need to keep as fit as I can for as long as I can so I can keep on fighting.
Lizzie, i know that is the wrong attitude to have but a break from chemo, I deserve it after so long. I am also beginning to feel normal again so this week I shall have so much to do catching up on what I haven't been able to do since Xmas.
I used to be a real fitness fanatic and continued at the gym after surgery up until about 3 years ago, now I do not have the energy. I could still do 100 sit ups
I know what you mean about the break from chemo. In the 2.5 months I was off chemo, I looked human again and loved the freedom which came with not worrying about my immune system. In retrospect though, I wish I had been harder the minute my CA125 started going up, and jumping up and down. Hey-ho, no looking back. We are where we are.
Very impressed with the 100 sit ups. Until last May I used to do a 3 mile run each day, and weights 2-3 times a week. Oh how the smug get smited
Lizzie, a break is just so good, I really am feeling so much better this week being further away from the last chemo session.
I used to go to the gym and do weights with the boys, as I have always been far to thin for my height and also to help fight osteoporosis, which for me could have been a problem with being a steroid taker for my asthma. I did this up to about 3 years ago and have now given up. I hate not exercising but I don't have the energy, fatigue this time round is dreadful.
I never know how people can plod the streets, running for me I hated, I would do the treadmill, but didn't like it. We do have a great exercise bike at home and my husband has a full set of weights, but I just can't get into it any more. Perhaps one day .......
I loved running. I live on a lovely little estate, with nice houses and people. I got to know so many of them over the years that I did it. There is nothing like running at 6am on a Sunny Summer Morning. I put on my profile I hoped to run and do weights again, but I suspect the way things are going, those days are done. Never mind, I will still keep as fit as I can.
My reason to do weights was also to strengthen bones and to add definition to a skinny little body. Oh how I long for that body instead of this bloated one. LOL!
Lizzie I have done my exercise today. A walk up Main Street in Gibraltar to M & S then a huge trolley shop around Morrison's. To say I am knackered is an understatement.
Plus the fact we have been dumb enough to take another little body into our home in a shape of a young ginger and white cat - about 6 months old I would guess. He 'found' us a week last Sunday and we succumbed to putting him in the garage on Sun and Mon because of bad rains. My husband out of the blue suddenly said let's keep him, this is after I spent hours trying to find a cat rescue centre that would take him. More expense, castration, vaccinations, passport, he has been blood tested and all was negative which was great news.
So here am I knackered with chemo and now 4 cats and one Golden Retriever - I guess it stops me worrying about my cancer lol
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