Round 3

Struggled to get to my gynae/oncology appointment yest due to the white out conditions we experienced here in NE Scotland during rush hour but I made it eventually. While I knew what to expect, i.e. round 3 about to kick off, it is very difficult trying to explain to friends and family that this was to be expected, they had no idea that recurring OC or PPC as in my case does happen.

She gave me several choices -

1 - leave off chemo until I really feel unwell - No Way.

2 - I could have Cisplatin/Paclotaxel or Paclotaxel on its own as it does the business too - now why would I opt for more side effects if Paclotaxel "does the business". very confusing,

I eventually told her that I was in her hands, what does she feel would be best?

Awaiting dates to start, I am sure I have read about people getting 3 week Paclotaxel, what experiences can you share. If at the mid cycle scan we discover that it is not working they will start me on Cisplatin as well, again if any of you ladies can share any experience of this i would be very grateful.

Has there ever been any campaign to get more research done into curing this blasted affliction once and for all? is there anything we can do? I have to say I am more annoyed than comforted when I read about survival rates of 5 years,(improving) - is that 5 years living with yearly cycles of chemo or what?

Any other ladies feel as frustrated as me and want to do something?

Anyway - away to take my mind off it and polish my Harley in the hope that summer weather WILL come this year!

Hugs to all

Joanna

xxx

9 Replies

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  • Hi Joanna

    I think I would have made the same choice as you've made. I can only admire the way you seem to be handling this new cycle of chemo. I know there isn't any choice but to keep on keeping on, but it isn't easy, is it? All the very best and lots of hugs for a successful course of treatment.

    As for the research, it seems to be little by little. All the major OC charities are taking the step of combining to raise awareness and running a pilot on this. You can read about this on the Ovacome site. Also, Cancer Research UK is doing research and also the Eve Appeal. It's all a matter of keeping up the pressure on MPs, NHS and GPs to diagnose early, also its time and money but we have to keep on hoping they find some answers soon.

    Will be thinking of you and keeping fingers crossed.

    Love Wendy xx

  • Hi Joanna,

    I must admit I think they mean by the "five year scenario" that we live that long with it, I will be five years later on this year so being five years from diagnosis,I then wonder if I am statistically cured, even though I am not, (just looks good on paper) as I know I have incurable ovarian cancer so it is all a bit meaningless....they still haven't got it sussed but we might read things to the contrary...love and best wishes x G x

  • Hi Joanna

    I was told the five year survival was just that, surviving for five years, with no reference to whether this is in remission or multiple chemos.

    I must admit, I find it frustrating that we don't hear as much about oc as certain other cancers. Last year, around March( at least they got the right month) I heard radio "adverts" about the beat symptoms, but nothing since. It is a great idea to make more women aware of the symptoms, but why oh why do we still hear of women who time and again are ignored by thier GP until they have advanced oc! I agree that much more needs to be done to raise awareness and finally get a cure!

    Love Chris

  • Hi Joanna

    You keep on battling. I so admire your refusal to be persuaded to give in - there is always the potential to beat this thing. The survival timeframes you mention are only statistical averages for all those diagnosed with oc which is highly variable in its behaviour and stage of diagnosis, and particularly variable by age - and thus pretty meaningless at individual level. And based on old figures dating back to 2008 since which time treatment has steadily improved. The five year one is often quoted, but they track 1, 5 and 10 year plus rates in fact... Why be ruled by something as theoretical as an old average which might not apply to you?

    cisplatin/taxol other is the US standard for first line OC treatment - i just had this combo here for three cycles. The combination was tiring - cisplatin seems to cause fatigue more than carboplatin. But effective, in my case. I read up a bit: Cancer relies on cells dividing rapidly, and the process has two phases as cells divide and rest and divide and rest. Each drug has a different role - cisplatin attacks cells in the resting part of the division, and taxol while it is dividing - it actually stops the microtubules forming, which is one if the phases of division. Stop this division and you can kill the cancer.

    On campaigns: i wish there was more welly behind OC awareness raising too. I must admit I Get frustrated when I see breast cancer getting so much voice and OC so little -- yet one can't begrudge that as its just as vital. I think media unfortunately also get cancer fatigue - they cover stories then think "we've done cancer now for a bit". Half the battle in PR is finding the openings to get messages out, not only whether campaigns exist. So it's not that Target OC and OC Action or Ovacome do nothing - they try to do a lot.

    Keep revving that engine and being bullish, it's great to see.

    Love

    Sue xxx

  • Hi discovermagazine.com/2012/d...

    I don't have any experience of these particular drugs but wish you good luck with these treatments. Hopefully you will get the dates soon and it is always good when you get underway and can start ticking them off.

    Yes I get very frustrated with the lack of progress that is apparently being made with this wretched disease, but there is a lot of valuable work being done. Have a look at this:-

    discovermagazine.com/2012/d...

    Let's just hope that some of these discoveries come to fruition very soon.

    Keep polishing that Harley!

    Monique x

  • sorry - not sure why the link obliterated where I had typed "Joanna" ???!!

  • Dear Joanna

    I'm sorry you're facing the third cycle of chemotherapy and can share your frustration at the lack of breakthrough with this cancer. Wendy mentions as many others do that we have to push for earlier diagnosis - but that doesn't exactly help us. I've often mentioned Professor Hani Gabra who runs an Ovarian Cancer Research UK project in the Hammersmith Hospital. He gives talks from time to time about his research and how it's progressing. I think you'd benefit from joining Ovarian Cancer Action Research and becoming one of their 'Voices'. You will get updates, invitations to seminars, and will feel as though you're making a contribution to research to deal with the faulty protein that's at the root of our cancer.

    I thought of Professor Gabra because he's Scottish and he mentioned he's working with centres of excellence across the UK including Glasgow and Edinburgh. Sadly none in Wales. His message was one of hope. Teams across the world have identified and isolated the faulty proteins in patients with Ovarian Cancer. His project links up with similar research across the world because Ovarian Cancer is relatively rare and there isn't a big enough sample group in any one country.

    The flawed protein has been created in a laboratory and injected into mice. In laboratory conditions in Denmark a serum was applied which repaired the protein. The serum was then trialled successfully on 10 MS patients in Denmark. The serum will be tested on women with Ovarian Cancer in centres across the world.

    This doesn't mean to say this particular remedy is going to work - or that clinical and other trials won't take another ten years before a solution is discovered and applied. However, the message is one of hope. Research is being conducted and they're not just looking at early diagnosis to eradicate this cancer. They're looking at remedies for those of us who have it at an advanced stage.

    Take a look at the Ovarian Action Research website - ovarian.org.uk/. You can sign up and get involved. They contact me when there's an opportunity for me to do something - receive a cheque on their behalf, give a talk on Ovarian Cancer. It's not arduous and you can pick and choose how much you do. I always use my Ovarian Action volunteering as an opportunity to promote Ovacome by handing out the BEAT cards and flyers. In this way I feel I'm helping Ovacome as well and providing better information about Ovarian Cancer, its symptoms and support mechanisms.

    I wish you luck with your third cycle of chemotherapy. I was really grateful to Sue for explaining what Taxol does by comparison to Carbo-Platin. Nobody explained this and I wondered why Taxol is prescribed with its multiple side-effects when it only does 5% of the job according to my oncologist. There was an admin error so I only had Carbo-Platin last time. This time round I've been told I'm having the two. Sue's explanation makes it far more understandable to me.

    As I understand it if these don't work there are other treats in store for us - all versions on the bleach theme - but until they discover the remedy it's all we have to hang on to and hope for something better.

    Take care if you're on that motorbike in this snow!!!!!

    Loads of love xxx Annie

  • Hi Harley.

    I think you contacted me on my blog. From personal experience, cisplatin has more side effects than carboplatin - I got very tired for a few days after it, while was much better on carboplatin. But it did work. I had to switch to cisplatin as I developed an allergy to carboplatin. You have to go with what oncologists say - they are the experts.

    Lord Saatchi put forward a bill in House of Lords in December asking for more innovation in treatment of cancer. His wife died of PPC in 2011, and he could have some power in moving things forward in OC/PPC treatment, I hope, as he has been high up in the Conservatives. However it would need the government to back his bill for it to get anywhere.

    I have written to him, and will let you all know if/when I hear back from him.

    Good luck. I am sure we are all behind you.

    Love,

    Eileen xxx

  • Hi Harley and drdu,

    I am on my third round of chemo - dose dense Taxol ( three weeks on then one off). The side effects are much less than my last two cycles - Carb/Taxol and Cisplatin/Etopaside.

    Thankfully Ca125 dropping steadily. Managing to walk for at least 1 hour and swim every day with only a small amount of joint pain and neuropathy.

    Well done drdu for focusing on 'other ways'. Delighted you have started the ball rolling with Lord Saatchi. I wonder if we should approach one of the newspapers to do a spread on the current state of play with OC, potential research options such as anti inflammatory agents and the less researched (unavailable on NHS) treatments such as hyperthermia and insulin modulation. Also the role of supplements, diets and exercise. This could be timed for March awareness campaign.

    Any thoughts?

    Brid

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