Rolling the Dice After All: Hi everyone, Here is... - My Ovacome

My Ovacome
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Rolling the Dice After All

Lindaura
Lindaura
71 Replies

Hi everyone,

Here is my update after a really thorough appointment with my Oncologist in Bath, with lots of input from my husband and daughter.

We all discussed the options and decided, together, not to pursue surgery at this time, as my new growth is very small and weekly Taxol would be the mop up after surgery anyway. So we will keep that on the back burner.

My Oncologist works closely with Susanna Banerjee and thinks the trial drug that goes with the weekly Taxol, TAK228, sounds promising, if I get that arm. If not, it will be weekly Taxol in Bath.

So, I am off to London today to sign up for the trial.

BTW: my last scan showed very slight progression, but my CA-125 went from 59 to 86.

I have been off Niraparib for 10 days! I am feeling fit and well.

I shall keep you posted.

Hugs to all,

Laura

71 Replies
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cbulha

Hi Laura,

It's always lovely to hear from you!

Even though I don't get the chance to post regularly here, because my 2 small children keep me very busy (my 2 year old has a beautiful name: Laura ;), I want to let you know that you're an inspiration to me (and surely to many others), so keep on writing to let us know how you're getting on.

I'm thinking of you!

Much love from Portugal 💓

Claudia

Xx

1 like
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Lindaura
Lindaura
in reply to cbulha

Thanks so much, Claudia!

You have inspired me for my appointment in London today.

My train is just coming into the station now.

But you are much too young to have this!

Keep up the fight,

Laura

1 like
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LittleSan

Ready for action 💪🏻. Good health to you Laura. 💐😘

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Lindaura
Lindaura
in reply to LittleSan

Thanks so much,

Sandra

Ps: a lot of waiting going on here!

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LittleSan
LittleSan
in reply to Lindaura

Yep, it's awful when you just want something to start to obliterate the blighters! They don't call us 'patients' for nothing. Xx

1 like
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lyn1987

Hi Laura - so glad to hear you are feeling better. The trial sounds really promising, I have everything crossed for you...........Good Luck x

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Lindaura
Lindaura
in reply to lyn1987

Thanks, jus hoping I get the good arm and that the side effects are tolerable.

Hugs,

Laura

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Maxjor

Wishing you luck in London today Laura. Sounds like either arm of the treatment should work well and I guess you will know rather quickly which arm you are on. Glad you had such a good meeting and that the family made the decision together! Looking forward to more updates! oxoxox Judy

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Lindaura
Lindaura
in reply to Maxjor

Thanks!

I just finished with my first screening. The nurse is lovely and amazingly patient and efficient. Organised everything for my next meet up in 11 days.

She arranged the PICC line, with the CT scan, so even if I drip out if the trial, I will be ready for weekly Taxol.

I might even go for the cold cap this time. Ugh!

Best wishes and hugs,

Laura

1 like
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Litchick

hi Laura, so, you go onwards and upwards and I’m sending hugs and good wishes for this next stage. Holding you in my ❤️

Litchick.x

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Lindaura
Lindaura
in reply to Litchick

Thanks, Lit,

I just hope I start writing again!

Meanwhile, just finished with my first screening appointment. It’s pretty exciting, even if I don’t Get the arm I want.

At least I will know what to expect when I go for the next trial.

Best wishes,

Laura

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delia2

I’m glad you’ve made a solid decision that you and your family are comfortable with. I hope you get the trial drug! At least in a trial you get close monitoring. By the way I saw an article posing the question of retrying Paros on people who were resistant to them. Trials may be coming in the future pairing them with other drugs in people like you.🌼🌸🌻

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Lindaura
Lindaura
in reply to delia2

Yes!

I heard that, too. I am not the only BRCA Positive person to be resistant, so there are trials in the offing. I have to be off a PARP for six months, before I can take part, so hence I am going for Taxol now.

Hugs,

Laura

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Jud15

Hi Laura

Glad to hear your appointment in London has gone well. 🤞you get the arm of the trial you want and good news that your local oncologist is so supportive. Think you're brave to have a go at the cold cap. All the best Judith

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Lindaura
Lindaura
in reply to Jud15

Hi Judith,

I have reconsidered the cold cap and now I think I will pass on it.

I don’t want even a tiny bit of misery added to the infusion day.

I shall dust off my wigs and hope for the best.

Hugs,

Laura

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Lyndy

Hi Laura

This sounds really positive. Susannah Banerjee is awesome! xx

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Lindaura
Lindaura
in reply to Lyndy

Thanks, Lyn,

I keep hearing that, but I am already in love with my nurse at the Marsden, so I feel pretty good about the trial.

Hugs,

Laura

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Manchesterlady

Good luck Laura.Onward and upwards , sounds like your in the very best of hands .

Sending hugs

Sheila xxx

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Lindaura

Thanks, Sheila,

It does feel that way!

Hope you are staying well.

Laura

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Neona

Sounds good- will be following your news. Good luck!

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Lindaura
Lindaura
in reply to Neona

Thanks, Neona,

Hope Your latest Hospital stay is an easily remedied glitch and you get to stay in the Patriot Trial.

Hugs,

Laura

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Neona
Neona
in reply to Lindaura

Thanks- still in at the moment but feel safe here- UCLH seems a very well- oiled machine!

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elzburg

That sounds promising Laura. At least surgery has not been withdrawn as an option in future. I’ve started Carbo/Gem/ Avastin for my second recurrence after Olaparib disappointedly failed - I’m Braca 1. I am very interested in the trial you are joining. Perhaps you could tell me over what period weekly taxol is being administered? Hope you get the TAK 228, albeit with journeys to London.

All the best Laura.

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Lindaura
Lindaura
in reply to elzburg

Weekly Taxol will be given for 3 weeks in and one week off. I think the tablets are added for two weeks during each cycle and the trial lasts for just six months.

There will be trials coming up for us BRCA positive ladies who are determined to be PARP resistant, but we have to be off PARPS for six months first.

Did Olaparib work for you at all?

How long were you on it?

Hope you tolerate your new regime and that it is effective, too.

Best wishes,

Laura

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marylondon

Sounds like a very positive meeting & very reassuring that your Consultant works closely with Dr Bannerjee.

Good that you can have the Taxol in Bath if you are in that arm of the trial . .

I’m having Carboplatin for my 2nd recurrence. If that doesn’t work , I shall certainly explore the Trials.

All the very best .

Mary

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Lindaura
Lindaura
in reply to marylondon

So sorry to hear you are suffering another recurrence. What a drag this disease is.

Hope you do well on the Carbo and you find new tools in the toolbox later.

Hugs,

Laura

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Spirit22

Sounds positive ! Glad you are feeling well and good luck with the trial best wishes Lesley xx

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Lindaura
Lindaura
in reply to Spirit22

Thanks, Lesley,

I am feeling pretty optimistic, but I remind myself that is how I always feel when I put my boxing gloves on.

Nevertheless, here I go.

Hugs,

Laura

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thomas62

Good luck Lindaura. I hope you get the arm that you want. Best wishes. Gwen Xx

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Lindaura
Lindaura
in reply to thomas62

Thanks, Gwen.

Me, too.

Now I have a two week wait for my next screening appointment, which includes another scan.

After that I find out whether I am even in the trial!

Best wishes,

Laura

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Coldethyl

Fingers crossed allnyjr tests and scans go to plan and you get on the trial soon x

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Lindaura
Lindaura
in reply to Coldethyl

Absolutely.

Fingers are crossed, but toes numb from neuropathy, so can’t cross those. But hopeful all the same.

Hugs,

Laura

1 like
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Coldethyl
Coldethyl
in reply to Lindaura

I think we have to be hopeful whatever - it gives us a way of living with this on a bit of our terms at least - and by trying everything we know we’ve given it out best shot x

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Mptelesca

Wishing you the very best. You are very pragmatic and tenacious. You will do this!

Your positive attitude is the driver to success. Stay well!!

Xox

Marisa

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Lindaura
Lindaura
in reply to Mptelesca

Thanks Marisa,

How are you doing? We all, I am sure, would appreciate an update from you.

Hope you are well and getting better all the time.

Hugs,

Laura

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Mptelesca
Mptelesca
in reply to Lindaura

Hi, Laura! I must have written my response and then never sent it? I'm a bit scattered at times. I am doing well. I feel stronger than ever. So far, bloods are ok while on Zejula...will be one year on October 1st. Enjoying my granddaughter, Miss Ellie and just working and taking each day one at a time. I saw in one of your responses that you are a pop singer! How cool is that?! Do you still sing?.....By the way.....you still look young and beautiful.

XOX

Marisa

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janwen52

Hi Laura,

Hope all goes well and you get the arm you want.

I have just started carbo again for second recurrence, one step forward and two back!

Lots of Luck

Janet

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Lindaura
Lindaura
in reply to janwen52

Dear Jan,

Are you BRCA negative?

I see that Niraparib was not your miracle drug either.

Did you ever have weekly Taxol?

My doc put me down as Platinum resistant, but I don’t think that’s true. Still, it will be good to have a break, so I can hit it again if ever I need it.

Now, the scales have fallen from my eyes and I realise that this is a battle that keeps on giving.

I will get through this, but another will make its presence known, so I am prepared to use all the tools available, even one at a time, and further trials in London also.

I wish you good luck on your ongoing Chemo. Stay healthy!

Hugs,

Laura

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janwen52
janwen52
in reply to Lindaura

Hi Laura,

Yes I am BRCA negative. I had Carbo Taxol alongside Avastin three weekly, but could only handle two rounds of the proposed six before Taxol and Avastin were dropped.

Continued with carbo only for last four, and again for six rounds after recurrence.

Hopefully will get through it again this time.

Like you, determined to keep trying.

Best of Luck

Janet

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IrishMollyO

Hi Laura

I'm so happy that you made your decision and plans are in the process of being put into action.

It's great that the trial is now near to reality and my big hope for you is that it goes to plan.

I also made a decision not to use the cold cap in 2011 and this year forward few reasons. I react badly to the cold in winter with blue hands etc and the thought of feeling even colder put me off.

I wish you success in your latest treatment . You inspire many people with your wisdom and insight into this disease. I love your precise answers.

Have a lovely weekend in the meantime

X X X

💚💕

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IrishMollyO

Please excuse typo !

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Lindaura

Dear Molly,

I make so many typos myself, even when I proofread!

But your message was very sweet and reassuring and I feel fortified and ready to do battle.

Of course, I am also afraid of being sick on the Taxol, as I have re-started my business and I hate to let it falter.

I am hoping that I can get things sorted out in a manageable fashion in the next two weeks, so it can run without me.

I also hate losing my new blonde locks and I am secretly hoping that my normally thick hair will rebel and stay on my head!

Hugs,

Laura

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jools53
jools53
in reply to Lindaura

hi laura I had cold cap ,very doable ,ive just got my scan results,5weeks on niraparib at mo but ca125 now 220 scan showed 17ml on surface of liver and a nodule on spleen bowels ok at mo stable no fluid feeling well, consultant gave me all clear to fly to America 18 October with kids plus a letter ,problem getting insurance for cancer side , part of me thinks take a chance what a dilemma ! if my consultant is prepared to write a fit to fly letter im thinking hes putting himself on the line if I had problems.

any one else having a rise on ca125 while on niraparib , staying on it for a while to see if any effect , if not more chemo and I want second surgery which hes agreed to , so ladies what shall I do regarding my holiday with kids and anyone had luck with insurance in America. good luck laura it will work im sure xxx

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Lindaura
Lindaura
in reply to jools53

I am disappointed that Niraparib is not the miracle drug we all hoped it would be.

I think you should go off on holiday now, with or without Insurance and prepare yourself for treatment when you get back.

Have fun now, but it looks like you will need to take some strong steps when you return.

Hope you have fun,

Best wishes,

Laura

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jools53
jools53
in reply to Lindaura

Thanks Laura I’m going got insurance for America 💪🏿 So I’m off xx

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Lind58

Best of luck! ❤️

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Lindaura
Lindaura
in reply to Lind58

You, too.

We all need lots of good luck.

Hugs,

Laura

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gmc920

Hi Laura,

Just wanted to wish you all the best and hope you get the trial arm that you want 🤞

xx Gina

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Lindaura
Lindaura
in reply to gmc920

Thanks, Gina,

Me too.

But that’s luck for you!

Hugs,

Laura

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Tabor

Praying for best results 🙏🙏🙏

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Lindaura
Lindaura
in reply to Tabor

You are very sweet.

Hugs for that,

Laura

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Gemimablackvelvet

Dear Lindaura,

you seem like a strong, beautiful lady and certainly inspire me to carry on with treatment. I'm 75 years old but still have a lot of living to do. I have a lovely little family and some truly close friends which as you know is a very important part of having the will to live as long as possible. I was diagnosed with stage 3c OC May 2018 after constant visits to the GP from February 2018. After Chemo and debulking in September my CT scan showed stable disease until a rise in CA125 to 23 this July. A CT scan showed 2 tumours, one very close to my liver and some peppering of cancer on my peritoneum. I'm now starting my first cycle of Carboplatin and Caelyx. Not lost any hair yet, however I'm prepared. Small price to pay for life.

I pray your trial is successful and look forward to reading further posts from you.

Love Angela x

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Lindaura

Dear Angela,

75 is the new 55, as far as I am concerned. We are vital women and have a lot of living and giving to do.

Carbo/Caelyx was very doable for me, although I spent the first week after infusion in bed, babying myself and being waited on hand and foot by husband and daughter.

Then I would pop out of bed and resume an almost normal routine, walks every day, and because there was no chemo fig, I could drive my car!

I did not lose one hair from my new blonde coiffure!

Best wishes and hugs,

Laura

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Gemimablackvelvet

Dear Lindaura, thank you for your words of encouragement. Today has been so dreadful. My only brother passed away this afternoon after an 18 month painful fight with mouth cancer. I'm devastated. Trying so hard to forget my own problems in spite of chemo side effects and really bad constipation. I just want to curl and die tonight but I have to be there to support my dear, long suffering sister-in-law. She's fought so very hard for David to no avail.

My love to you,

Angela xx

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Lindaura

I am so sorry to hear your sad news.

This part of our lives has come as a shock. Our siblings and beloved cousins are all getting older, too.

More and more of us are suddenly getting cancer.

A lot of heartbreak is facing us, but we have to stay strong.

Meanwhile, you have got to get that constipation under control, whether you use docusate sodium, lacido, lactulose, Senachot or whatever, set up a regime. My daughter does everything each night, staggering the scenechot one night and lactulose the next. A glass of prune juice each morning.

I am okay with one docusate sodium each night.

Hope you manage.

Hugs,

Laura

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Gemimablackvelvet

Good Morning Lindaura,

thank you once again. I can't believe you replied so quickly. I've been awake since 4am and breaking my heart over coffee, pears and prune juice.

If there is one thing this diagnosis has done for me it's made me a more caring, more understanding and more generous lady. Until 2018 I thought I was going to live forever. Now all I want to do is spend money on my friends and family, constantly thank them for their strong support and see them as often as I can. I had to cancel a holiday to Portugal last month and a planned holiday to Disney, Florida in October because the insurance company refuse to cover me whist having treatment. However, I insisted on both occasions my daughter and family go without me despite strong protest. I have also insisted I cover 90% of the cost. It helps me get over the disappointment. My husband, Brian and I will be quite happy to take our future holidays in England. I don't need to spend money on myself as I feel I have everything that money can buy. I have had a difficult marriage due to my husband's "lifestyle" but once more this diagnosis has changed him considerably. He's practically given up alcohol (which frankly has made him a different person) and given up golf altogether. He rarely leaves my side and even allows me to have my friends and family round whenever I wish, something that has been a major problem throughout over 40 years of marriage. His job as a high ranking Police Officer took preference over everything and made him extremely anti social (except with his colleagues, both male and female) I have said far too much now and I can't understand why I've burdened you with this Saga. This morning I needed to pour out my feelings (without feeling

disloyal) to someone who doesn't personally know me.

If you're still awake and I haven't bored the pants off you I wish you all the very best with your treatment, long may it continue.

Keep fighting and posting. It seems a lot of us need to hear from you.

My love to you,

Angela xx

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Lindaura

Wow,

That was one of the most fascinating responses I have ever received. Unusually deep and endearing as well.

It is true, that I too planned to live forever and had not even noticed that I was no longer 26 years old, until I saw my actual age on my hospital discharge papers.

I was a pop singer and a performer for half of my life, so looking good and feeling young was my normal. Until this hit like a ton of reality filled bricks.

I must urge you, however, to disregard the English obsession with travel insurance.

There are no insurance police to stop you from travelling without it.

What’s the worst that can happen?

You have to cancel your holiday due to sickness.

Otherwise, if you get sick while on holiday, all hospitals around the world , even in the USA, will treat you. So there.

Meanwhile, I think that it is great that your family has pulled together, as mine has.

This disease does have a silver lining.

Also this Ovacome Forum has been a source of great support and wisdom, as well as tragedy and a constant reminder of our fragile hold on life and our own good health.

I wish you all the best.

Hugs,

Laura

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Gemimablackvelvet

Good morning Laura, looks like you have become the "Matriarch" on HealthUnlocked. You're certainly becoming someone who everyone turns to in need of help and empathy. That's usually my role amongst my friends and family but I'm not on a par with you especially since this dreaded diagnosis.

About holiday insurance, I know many cancer patients risk going without it but my oncologist was adamant I shouldn't travel without it as there was a chance of sepsis etc.etc. which could cost approx. £100.000 in America. My recurrence involves 2 new tumours, one 3cms the other 5cms, plus some peppering across the peritoneum and a second operation was ruled out. He said the carbo/caelyx may or may not work but he would look at the results after the 3 months and maybe try something else if necessary. I didn't feel very positive after leaving his office but I appreciate he cannot give me any definite answers. I feel I'm repeating myself here (an age thing) My CA 125 had only risen to 36 before my first treatment so like you I'm not confident CA 125 is an efficient marker.

My love and thanks to you

Angela xx

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ellseybellsey

I hope all goes well for you Laura you are a very inspirational person, you keep me positive even when you are facing challenges of your own.

Ellsey xx

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Lindaura

Hi Ellsey,

Hope you are able to enjoy these chemo free months.

Always a worry though.

I am guessing we will always be wary.

Keep up the fight,

Laura

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Ge0rg1na

Well done you! I did a trial in London for a drug taken alongside weekly taxol and it gave me 10 months extra. It's the way to go if you're accepted and they keep such a close eye on you, you'll be in good hands. Best of luck Gina x

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Lindaura
Lindaura
in reply to Ge0rg1na

Thanks, Gina,

I am even thinking to stay in the trial, even if I do not get the extra drug, just to donate my results to research.

I guess it will depend on how I react to the Taxol infusions, and whether the trip to and from London is too hard on me..

Hugs,

Laura

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Artgreen

Wishing you the very best and hope all goes as smoothly and painlessly as possible, emotionally and physically.

Alex x

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Lindaura
Lindaura
in reply to Artgreen

Thanks, Alex,

You, too.

Hugs,

Laura

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BP44

Hi Laura, I have also just signed up for the DICE trial and am having all the screening tests this week at the Marsden Sutton. Will let you know if I do get on! Good luck, fingers crossed for you.

Belinda

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Lindaura
Lindaura
in reply to BP44

PS: are you also BRCA 1 positive?

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Lindaura

Dear Belinda,

Nice to know! Did you know that I have decided to stick with it even if I get the lesser arm?

That is, as long as the side effects don’t make it too hard for me to travel to London.

Where do you live?

Hugs,

Laura

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BP44
BP44
in reply to Lindaura

Hiya,

I'm not BRCA1 positive. I have platinum resistant clear cell (now stage 4b - was stage 3c at diagnosis). I'll also stay with the paclitaxel only arm if that's what I get, luckily I live fairly close to the Marsden Sutton so the weekly regime should be ok. Caelyx was the other option for me, but Dr Banerjee thought this was a better of the two.

I do hope the travel will be ok for you and side effects not too bad. Let's see how things go.

Belinda x

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Mptelesca

You go get 'em, beautiful lady! You will be fine! Keeping you in my heart and thoughts and sending you tons of positive energy!

XOX

Marisa

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Lindaura
Lindaura
in reply to Mptelesca

Thanks, Marisa,

How are you doing in Zejula?

Are you still holding strong?

Wishing you all the best.

Find regards and gentle hugs,

Laura

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Mptelesca
Mptelesca
in reply to Lindaura

It's been a year on Zejula. My CA creeps up a few points and then goes down one or two points just to make me crazy. Went for test yesterday and it went to 18 from 19. I know that sounds insignificant, but, I had recurred at 22 so I am always on high alert. Feel I can exhale for another month. Other than that, I feel stronger than ever. Don't know why. Could be the supplements I'm on with Nutritionist. She has me on all sorts of stuff to combat any side effects and keep the cancer cells from growing. I don't know how long this strength and energy will last, but, I will take it for now. Comes in handy chasing my 2 1/2 yr old grand daughter. lol. I work full time and then take her on Fridays.

I am very excited for your new treatment. I know you will do well. I am one of your biggest fans as you are always so positive and strong! Good luck and let us know how you make out.

XOX

Marisa

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