My Ovacome
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Bad news today

Went for scan results today to see if my second line chemo is working, unfortunately it is not and it was apparently their best hope of giving me a little while longer. Will now be having weekly taxol as my cancer is platinum resistant. Have been told that 30 percent chance of this working, but if it doesn't then no other chemo options. They will refer me to see if any trials suitable.

The most devastating bit of this is having to tell the family more bad news.

A very despondent George x

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George,

I'm so sorry. Firstly: there's a 30% chance of taxol working. Hang on to that - it's not a bad stat in ov. ca. terms!

Just now you will be feeling bloody awful, but you'll get your second wind soon.

All love to you and yours.

Isadora xx

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Hello George.

I'm so sorry you've had such rotten news. I really hope you'll be in the right group and will respond to the taxol.

Thinking of you and your family.

Best wishes

Linda

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I'm so sorry to hear this. Is there a possibility of surgery or radiotherapy? Please be very kind to yourself. I know it goes against the grain, but care for yourself as well as everyone else.

I loved you poem. You found the words to describe how we all feel.

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Sorry to hear your news George. Devastation and tears are natural but they will pass and you will fight again. As Isadora said there is a 30% chance on taxol. Last May a locum oncologist told me that there was nothing left for me either, but along came my new oncologist from the Marsden where they had had a lot of succeess with weekly taxol. My 125 came down from 4000 to 380. You have a chance which is better than none and it could buy you time for trials.

With love and thoughts

Suex

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That's very encouraging Sue, fingers crossed that I have a good response to this as well.

Love George x

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Hi George

Yes i agree with what you say about telling family bad news , in fact I think its actually the very worst thing about his damn cancer.

I am also looking to be referred for trials .Weekly taxol not available to me locally, I know it has worked very well for some people.No reason why you should not be among them.

WIth Love

Juliex

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Dear Julie

I'm reading this blog with more and more desperation. Why can't you have weekly taxol? Surely it can be given you? My neighbour had her chemotherapy administered in her home as there wasn't space in our local hospital and she had taxol. Please do tell us that you can have access to any treatment you need.

Thinking of you. love Annie xxx

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Annie

My understanding is that my local hospital goes strictly by NICE guidelines.Strictly speaking , weekly Taxol is not part of that guideline. However I believe it is available at some local hospitals.

I am keen to go to the Marsden as I am interested in discussing all possible treatments with them, including PARP inhibitors, and weekly Taxol. I think this is the right time for me to go back there.

However I do think its pretty outrageous that we can't all be offered equal treatment close to home.

Juliex

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Dear Julie, If it helps my GP told me that those who ask the loudest get the treatment these days. Wales is generally pretty rubbish for the NHS but they do agree to give any treatment if it's recommended by. Second opinion. I'm thinking of you and hoping you get some better ideas from your visit to RM. it is a long way to travel but I think it's worth it so you don't leave any stone unturned. I wish you the best of luck with this. Xxx Annie

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Thanks Annie.

Well I've got a plan,and I'm doing what I can. meantime hoping to feel ok to enjoy the summer(when it returns).xxjulie

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Dear Julie

I really hope you get things sorted out, it seems rediculous that the treatment around the country is so varied.

At least the hospital I attend seem to be fairly go ahead with various treatments and into research, so I suppose I'm lucky in that way.

If you get a referrel to the Marsden, then you should get the treatment you need, keep us informed of what's happening.

All the best and fingers crossed.

Love George x

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Hi George

Yes although its a long way I am pleased to be going to the Marsden.Your hospital does seem better.Are you at Addenbrookes or ipswich?I really hope your new treatment works well.

Love Juliex

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Yes I'm at Addenbrookes and they do have a good reputation, fingers crossed for us both.

Love George x

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Hi George

I am so sorry...I know there is nothing I say is going to make you feel better.. I am thinking of you love x G x

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Dear George, this is devastating news. I'm so sorry you're having to go through this. I'm willing you to be the 30%. None of us are a statistic. I seem to recall Lizzie mentioned the Rotterdam Regime and it was something she was hoping to try. I don't suppose this has been mentioned to you has it? She heard about it from the Royal Marsden.

Sending my love and hoping to hear better news. with love xxx Annie

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Dear George, thinking of you, lovely encouraging messages on here, love Diane xxx

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I am so sorry George!

I was so lucky last year when it did not work and they were able to operate. Good luck with finding a trial!

Thinking of you!

Much love

Margaret.

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Sorry about your bad news. Hoping the taxol does the trick. My second line chemo has not worked much for me and I'm having surgery again now- is this an option for you? Also would you be able to get Avastin?

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Thinking of you and hope you have success with weekly taxol, or they find a good trial for you.

Best wishes and love

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Dear george

i echo all that the others have said, good luck and all my positive thoughts go out to you.

sue

x

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Dear George,

I am so sorry to hear your news, but you are not a statistic and you must try and stay strong. I was told I had 30% chance last December and because my scan last week was very good I've now been told my chances are much better, so you never know what will happen.

Love, prayers and positive thoughts are being sent your way.

Liz X

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Thankyou so much for all your lovely messages of encouragement, will keep you informed of how things go.

I had an excellent response to my first line chemo, which was Carboplatin and Taxol, what I am hoping is that it was the Taxol that I responded so well to, as they are saying my cancer is resistant to platinum based chemo's. So will start this next lot with possitive outlook and hope for the best.

Will be starting on 4th July, so will enjoy the next 2 weeks treatment free as much as possible.

Thanks again everyone, love George x

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Just wanted to add my wishes and hopes to all the others, George! Hang on to the 30% and the messages where things have worked well for others. If you have the energy, keep going back for more ideas to your hospital, or try ringing the helpline for advice from the nurses at Ovacome.

Love Wendy xx

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My heart goes out to you, George. I sooo sympathise with you and know how hard it is to hear such news and then have to tell your family. I was told last June that my Ca had spread to my Lymphatic System and back and pelvis and there was definitely no treatment to be had, or trial to go on. Telling my family was horrible.

Then, in September, I was found to have Melanoma in my leg and Squamous Cell Ca on my hand. Had both operated on to remove them and skin grafts to cover holes left. To show there can be an upside to a lot of things - because of the Ov Ca this didn't freak me out !! So try and keep your chin up, George, and as others have said, I send my best wishes and encouraging positive thoughts, Solange

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Best of luck to you George. Telling the family is the hardest part for me too... I'll keep my fingers and toes crossed for you.

Linda xx

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Have you tried taking any IP6&Inistol? It is one of the top cancer patient vitamins. Ithelps destroy the bad cells and create new ones. I didn't read everything yet but I pray it will do some good. You are in my prayers.

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Dear Trimgirl, Thanks so much for posting up about IP6 & Inistol. I looked up some research which seemed positive for my strain of OC. I have the most aggressive type - undifferentiated cells - and I noticed from the research paper that it increases differentiation of malignant cells which is a good thing so I'm going to try a dose and I'll definitely ask the oncologist at my next appointment. Apparently this food supplement exists naturally and in abundance in plant materials but it didn't explain exactly which plants.

It's always good to have another plan to explore.

Best wishes. Annie

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Dear George,

I hope the weekly taxol goes well for you.

I go for the results of my scan on Tuesday after finishing my fourth line of chemo which was Etoposide as I (cancer) is platinum resistant perhaps you could ask your onc about that.

Best of luck.

Love Marilyn

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Hi Marilyn

Yes I will ask about that one, I'm not sure if one of the combination I just had was similar to that, so will ask the question next time I go.

Good luck for Tuesday, sending positive thoughts your way.

Love George x

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Dear George,

Thank you.

love marilyn x

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Hi Marilyn

Just sending you my beat wishes for today..

love x G x :-)

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Hi Gwyn,

Thanks for your best wishes.

Bit of a strange result really my CA125 was 80. Last time I had it taken whilst I was still on chemo it was 51 but I have an awful cough at the moment so that could have caused the raised result had a chest xray incase any nasties had spread but that was fine.

He said that the scan showed an improved picture so the chemo had worked but he wants to see me in six weeks and no blood test!!!!!

He will go more on how I feel!!

Love Marilyn :)

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Dear Marilyn

Sorry to hear this.. It might be the cough though.. I know they are more concerned when the results are in the hundreds, so try not to worry (easier said than done) thinking of you love x G x :-)

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Dear Gwyn

Thank you. Normally (strange what becomes the norm) after finishing chemo I've always been well below 35 which makes it a bit more worrying.

I've got a stall at a craft and collectables fair tomorrow in aid of Force Exeter based cancer charity so hopefully I will be very busy and take my mind off things.

Hope you're still ok.

Love Marilyn:)

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Hi Marilyn

I hope the weather is nice for you down there in Devon... my husband is from Plymouth....I love it down there...we live in Chester now... I've just posted a poem about him.. It is humorous (I hope) ... Best wishes tomorrow hope you raise heaps of money. Love x G x :-)

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Thanks Gwyn.

The weather at the moment is horrid it's been misty all day and cold. The fair is in Beer nice hotel just need the people to put their hands in their pockets.

I think your poem about your husband is humorous can just imagine the situation and the headlines if anything had happened!!!!

Love Marilyn :)

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Hi George

Still thinking of you best wishes x G x :-)

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