good & bad News

[Veronique]

Hello, I've completed 6 mo. of Carbo/Caelyx with no real side effects (except usual nausea, weakness etc)thanks to large doses of Vit E & B6 and now I'm free from the never ending hospital visits, my beloved companion of 15 years had to be put to sleep on Monday. He was a v affectionate and v vocal white & ginger moggie and I loved him like the child I couldn't have. I miss him so terribly.

On a more cheerful note I hosted a Mad Hatter's Tea Party for Target Ov Ca yesterday and kind friends made cakes, wore silly hats and donated over £200 so far.

Just wish my Archie had been here to share my delight.

Today I'm going for genetic testing for BRAC1/2 gene (a bit late?) then CT scan in April.

Good luck to you all out there.

V

[Whippit]

Veronique, what an amazing idea to have a mad hatters' tea party. I bet you had loads of fun. I held a Tea and Cakes with the Neighbours Party on Sunday. It was a lot of work but rewarding and just lovely to get everyone talking to each other. I am still trying to get rid of some of the cakes!

But on a sad note I'm so sorry you've had to say goodbye to your loyal companion Archie. I can imagine just how much you miss him. Perhaps you could find another kitty that needs a good home. I've only ever had rescue animals. They can be a bit ideosyncratic but very rewarding all the same.

I'm interested in BRCA testing because I do a bit of lobbying in Wales and we only have 120 funded BRCA tests per year. Currently patients have to prove they have two relatives with prostate, ovarian or breast cancer. My hospital in London told me they are testing all women with serous ovarian tumours as up to 20% are linked to the BRCA gene and some women are thought to have BRCAness qualities so they'd benefit from treatment with PARP inhibitors. Do you remember your hospital's reasoning behind suggesting you are tested.

Enjoy your break from chemo and from hospital. I'm so heartened to hear you found it OK as I'm just about to start the same regime.

xx Annie

[Veronique in reply to Whippit]

Hello Annie, I always read your posts as they are so informative. My Oncologist referred me to Southampton General for genetic testing as I have several female rels (cousins & Aunt) who had breast cancer. I was given yearly mamogrammes up to age 50 for this and when I developed Ov Ca coming up for 4 yrs ago I wrote and asked them why I was not offered testing for the BRAC genes. No satisfactory reply but I will ask again when I see the geneticist from Soton Gen.

I feel it's a bit late. It's most likely the OvCa will kill me (brutal but true) so why waste funding (which she wouldn't let me have to try Avastin) now.

V

[Whippit in reply to Veronique]

Hi Veronique

It's lovely to get to know you better. If I were in your shoes I'd press for a BRCA test. If it's positive there are different treatment options called PARP inhibitors which have shown some success at extending remission. You mention Avastin, I was at a conference in Glasgow and asked about Avastin and PARP inhibitors as I'd heard the latest emerging research into Avastin showed it to be more effective later down the treatment pathway than 1st and 2nd line.

The oncologist said there was some reason to think if Avastin doesn't work PARP inhibitors might be a better option for a patient.

The other important factor about identifying whether women are BRCA positive is that relatives can be tested at an appriate time and take preventative action or be vigilent for prostate, ovarian or breast cancer.

I was at a conference in London but have jumped on a train back home to Cardiff to give an interview on ITV Wales about the BRCA issue there so mugging up on some facts and figures. I'm not BRCA positive so didn't take too much notice until I saw a Change.org petition from Ovarian Cancer Action demanding fair access to BRCA tests across the UK.

Have you seen it? I hope everyone signs it as it's unfair some have access to the BRCA test and others don't given it can prevent cancer occuring.

HERE's the URL

change.org/p/uk-and-devolve...

xxx love Annie

[baxbird in reply to Whippit]

Hi Annie,

Just jumping in here to say that my oncologist referred me to Southampton for geneticBRCA testing only because the referral process had changed to include those of us with serous ovarian tumours. I saw them a couple of weeks ago. I don't have a family history of BC or OC ( but lots of other types of cancer in my fathers family). It's apparently a recent change?

Hope all well with you

Dawn xx

[Whippit in reply to baxbird]

Hi Dawn

This is really useful stuff as the access to genetic tests across England is patchy. It's best in Scotland and worst .... guess where .... in Wales!

I've just done a crash course in BRCA Genetic Tests on the train home from London. I had a call from ITV Wales last night to do a 4 1/2 minute slot this afternoon for their Sunday News Programme and had to mug up the report by Ovarian Cancer Action last year on BRCA Testing.

All women in Scotland with non-mucinous tumours are tested, and in some hospitals in England and in the Fens area where there's a trial going on women will be tested as part of their programme of treatment for ovarian cancer rather than having to find their ways to the genetics service and ask for a test. There are only 120 funded tests p.a. in Wales which isn't going to identify the 80 average women diagnosed with ovarian cancer every year who will have the BRCA mutation.

It's good to know Southampton Hospital have adopted the approach to test all women who have tumours that are linked to BRCA mutations. So far they have identified that 15 - 20% women with ovarian cancer carry the BRCA mutation, but recent thought is it could be as much as 50% of women. My team in the Royal Marsden said current thinking is there are BRCA 3, 4 and 5 but they haven't yet been identified. The idea is to do trials offering PARP inhibitors to women with and without the mutation to see how many respond. Sort of finding a cure before you've identified the disease!!!

There are plenty of women with ovarian cancer who test positive who don't have a family history of prostate, ovarian or breast cancer which is why the current thinking of making us prove we have one or two close relatives with prostate, breast or ovarian to have a test is deeply flawed.

Sending a heartfelt thank you to brave people like Angelina Jolie who find these things out and use their stardom to help others.

Hope all is well with your treatment. xxx love Annie

[vipervictoria]

I am so sorry you have lost your fur baby - I hope you don't mind the americanism. The pain is acute, it will fade but never leave you entirely. My experience has been that another animal - a dog in my case - will come along, and not so much fill that hole but create another of its own. These simple animals give us so much more than we give them. Best wishes, Vx

[ladygooner-uk]

So sorry about your cat, I lost 2 in the last few years , William, at age 18, and then 3 years later his sister, Emily, at the grand old age of 21. I still miss them both terribly, but then Alfie found me- literally came into my garden and wouldn't leave! As he was rescued from his previous home he was very touchy but with time and patience he has settled well ( despite finding a bowl of engine oil to sit in- twice!)

I still miss me and wills but alf is here now and he is such a character, the moral being, the right cat will find you!

Great news about the party, sounds good fun

Sue

x

[Lovis]

So sorry, you lost your lovely furry baby. I have 9 cats so I know what it's like. Lovis x

[thesilent1]

Hi Veronique, so sorry that you have lost your companion, Archie. I know how you are feeling as we lost our beloved Goldie (Labrador) almost 3 years ago now after 17 years of fun with her. It was a big gap in our lives.

On a more cheerful note, love your idea of a Mad Hatter's Tea Party. Sounds like great fun. Fabulous way to raise awareness too.

I had genetic testing last year but was not positive for either gene which is good for my daughters. Be aware that it will probably take months for the results to come through, well it did here in NI.

Take care. Ann xo

[Veronique]

Many thanks. See my latest posting for more info.

V