Laura & the DICE Trial Update

[Lindaura]

Hello everyone,

Hope you are all as well as can be and are keeping warm as we head into winter.

Well I have more good news to report.

Entering the first week of my second cycle (month) of the DICE trial, I was now on the lowered doses of both Taxol and the trial drug TAK228.

I had just received the great news of my CA-125 dropping by more than half, and I was ready to see if I could learn to live more normally on my new regime.

I felt a huge difference in my well being that first week and even better the next week, so I could now count on good days from Monday, to Friday, which includes my Infusion on Tuesday.

Those days I felt stronger, was hardly breathless, and began to realise that I could almost live normally, but I hadn’t actually dared to leave the house. I think it was raining all that week.

On Friday, as expected I get hit with that extreme fatigue, where I cannot make it up the stairs without needing to sit down and catch my breath and the smallest tasks leave me exhausted and breathless and I just want to sit in my comfy bed.

That extreme fatigue lasts for the next three days, Friday, Saturday and Sunday, but I begin to feel stronger Sunday night and stronger again in Monday, when I went to the Marsden this Tuesday I could report a vast improvement in my well being.

So I have got my MOJO back.

The research nurses and doctors are thrilled by my transformation and I now have a pattern I can recognise and live with.

So I am staying on the trial and looking forward to next week, which will be my first week off of everything.

I am planning small outings, meeting up with friends and associates. All my friends have visited me at home, but I have not been strong enough to meet in the cafes like I used to.

I have a CT scan in the middle of my rest week, but I am looking forward to a good scan result.

Then I am going to find out what it’s like to not have any chemo for a whole week!

I have to add that I met up with Anne (shorty), at the Roma Cafe on Tuesday before her unfortunate appointment and we had a lively chat, made even livelier, by a neighbouring table, where another lovely woman could add her experiences to our mix. Both women had great support from their husbands, as I have also had.

The meet-up made my day, so I was very exhilarated when I went off for my taxol infusion.

Thank you Anne and Amanda, and thank you all here for your great advice and support. This really is a wonderful resource.

Many hugs🥰🙏🏼😀,

Laura

[Beauxbelle]

This is wonderful news. Long may this continue. Love and hugs

[Lindaura in reply to Beauxbelle]

Thank you, Beaux,

I am very hopeful.

Hugs,

Laura

[Manchesterlady]

That’s wonderful news , so good to hear that you are doing so well . You are such a positive, strong inspiring lady . Wishing you the very best xx

[Lindaura in reply to Manchesterlady]

Thanks, Sheila,

Sorry to take so long to respond. I spent this week’s good days working like a maniac!

Now, I am in bed for the weekend, but will use my clever bed desk to keep up with work.

I am self employed, so I don’t get weekends off.

Hope you are doing well,

Hugs,

Laura

[Hidden]

Excellent! That is super! You are super! Keep it up! 🤗

[Lindaura in reply to Hidden]

You are sweet!

Thank you,

😻🙏🏼😻

[delia2]

I'm so happy and relieved for you, both regarding the CA 125 and the improvement in feeling good. I feel similarly after getting through the first two weeks of caelyx/carbo. The first week was horrible but the second has been great. I can do this! You are a key person on this site and I'm sure everyone is rooting for you!

[Lindaura in reply to delia2]

Thanks, Delia,

Yes, there is a rhythm you get used to with Carbo/Caelyx.

Just give in to lots of bed rest and pampering, and taking your digestive meds for the first week or so, than back to normality for the rest of the month.

Best wishes and hugs,

🥰

Laura

[Samjane]

Wonderful news!

[Lindaura in reply to Samjane]

Yup!

Long may it last and let it work it’s cancer destroying magic!

Hugs,

Laura

[sticky3006]

Great news! Keep up the good work and I’m keeping everything crossed for you 🤞🏼. Take care, sticky3006 xx

[Lindaura in reply to sticky3006]

Thanks so much.

I am breathing many sighs of relief.

Hugs,

Laura

[Vicx1977]

Sounds really positive laura! Long may it continue, lots of love vickie x

[Lindaura in reply to Vicx1977]

Thanks, Vicky,

It’s been a learning curve, but that’s a good thing.

Hugs,

Lay

[Shorty864]

Dear Laura, how glad I am to hear this - it brought tears to my eyes - agree you are a key person here.

I am up so early these days as the Avastin, I believe, gives me a headache early in the morning. Oh well the less of my worries.

I have been given the name of another doctor who organizes trials in London, so will do a little more research and then probably give her a call.

Talk to my oncologist today - promises to be an interesting conversation!!

Here's to your week of freedom.

A big hug. Anne XXX

[Wanthealth in reply to Shorty864]

Hi Anne, I will be starting on Avastin And Doxil soon .. wondering what side effects you have had and if any hair loss or thinning?? I will have theses 2 drugs 1 week then 2 weeks later just avastin for a 6 round I cycle if chemo ( my 2nd recurrence in less than 18 months 😟) I used the cold cap previously so kept my hair so wondering if will have to again with these drugs. .. any advice will be appreciated. Thank you. Hugs. Sue

[Shorty864 in reply to Wanthealth]

Dear Wanthealth,

Doxil my dear is I believe another name for Caelyx.

I am on Caelyx and Avastin and no you do not loose your hair. In fact I finished in July with carbo/taxol and now in November my hair is growing again - it is a bit like baby lambs coat, but who cares!!!

All the very best. Anne xx

[Shorty864 in reply to Wanthealth]

Sorry - not had any other side-effects at the moment - in fact feeling quite good - living almost normally, a bit fatigued sometimes. Anne xx

[Wanthealth in reply to Shorty864]

Thx for reply hugs

[Lindaura in reply to Shorty864]

That’s good to hear.

Really good to see how quickly you picked up, ready to do battle!

I just found out (because the trial instructions are actually not very clear) that my rest week won’t be a complete rest week after all.

I have to keep taking the trial drug TAK228.

We only take it 3 days a week, but it has the same kick as the weekly taxol.

So back in bed by Friday!

Oh well. I will still get lots done on Monday to Friday!

Glad to hear you are doing well aside from Avastin headaches.

So pleased to have met you and your husband.

Hugs,

🥰🙏🏼❤️

Laura

[Shorty864 in reply to Lindaura]

Thank you Laura. Yes I try and not dwell on the negative things - got out into my garden yesterday and did 3 hours of cutting back and clearing up leaves only to have leaves everywhere again to day.

Got a copy of the letter sent to my oncologist from the RM - it does sound as if we were in different appointments, the consultant and I, - and if my husband had not been there I would have probably thought I had imagine the whole thing.

Sorry to hear it is not a complete week off for you, but I know you will make the most of it my dear.

Naomi, who is one of the lovely ladys on this forum , who also lives in Cornwall, has convinced me to see another consultant who is in charge of trials in London. SoI will write to her next week and see what she has to say.

All the best my dear, it was lovely to meet you and hopefully it will happen again. Anne XXX

[Lindaura in reply to Shorty864]

So good to hear you back in the ring!

Those wet leaves are driving me mad!

Hugs,

Laura

[Wanthealth]

So excited for you hip hip hooray 🤗 wonderful news and hope you continue to feel and have good result the your scans and feeling well on this trial!!! Gives us all a hopeful feeling🤗🙏🏻🤗. Hugs Sue

[Lindaura in reply to Wanthealth]

Thanks, Sue,

You are right. I am happy to be a guinea pig in this.

Maybe my experience will tweak the dosages they offer us gals.

Be well,

Hugs,

Laura

[Jud15]

Great news Laura x

[Lindaura in reply to Jud15]

Thanks!

We need good need,

Hugs,

Laura

[LittleSan]

So glad to hear this Laura. 👏🏻👏🏻👏🏻😘

[Lindaura in reply to LittleSan]

Yes,

What a relief.

Hope you are doing well,

Hugs,

Laura

[Lorent]

What fantastic news Laura, so happy for you.

Loren x

[Lindaura in reply to Lorent]

Thanks so much, Loren.

Hope all is well with you,

Hugs,

Laura

[Lorent in reply to Lindaura]

Hi Laura, I'm on gem/cisplatin but not doing too good after first infusion my CA went from 506 to 916 now found I have acities build up so Monday morning back to oncology to see about draining 😕 I'm just hoping to stay stable until the Tisotumab Vedotin trial starts in January it seems promising so keeping everything crossed 🙏🙏

So happy you are doing well

Loren x

[Lindaura in reply to Lorent]

Oh, Loren!

What a struggle! I have everything crossed for stability until January!

Good luck with the drain,

Hugs,

🥰🙏🏼🥰

Laura

[marylondon]

Such encouraging news . We are cheering you on .

Mary x

[Lindaura in reply to marylondon]

Thanks, Mary,

I am glad I ralleyed and could stay in this trial.

I hope this will be good for everyone.

Hugs,

Laura

[Hidden]

Looking good Laura! Glad you are tolerating the treatment. Good Luck with the scan ✌💪🙋‍♀️😍

[Lindaura in reply to Hidden]

Thanks! I have already convinced myself that the scan will show amazing shrinkage!

Fingers crossed,

Laura

[Spirit22]

Great News Laura xx

[Lindaura in reply to Spirit22]

Yes,

A sigh of relief.

Hugs,

Laura

[fendweller]

Wonderful news .x

[Lindaura in reply to fendweller]

Thank you,

So great to feel almost normal.

Hugs,

Laura

[Barmycharm]

Go Laura you’ve got this!! You are so inspiring, always lifting everyone else with your positivity and informative posts. But also know you can rant or moan if you need to?!! Full of admiration for you and willing you through your trials

Love and hugs

Claire xx

[Lindaura in reply to Barmycharm]

Thanks, Claire,

You are very kind and generous with your compliments.

I am lucky that the team found a way forward for me and probably learned something in the process.

Hope you are well,

Hugs,

🥰🙏🏼🥰

Laura

[thomas62]

Brilliant news Laura. Gwen Xx

[Lindaura in reply to thomas62]

Thank you, Gwen,

Keep well,

Hugs,

Laura

[Maxjor]

Always so glad when I see your posts Laura! And so SO glad about the results so far with the new dosage and the pattern you know and can work around. I am sure the scan will reflect how you feel and what your ca125 is doing. YAY! Looking forward to hearing more when you know more but such a nice post to read! oxoxo Judy

[Lindaura in reply to Maxjor]

Oh thanks, Judy,

Wonderful to hear back from so many ladies on here.

And so fantastic to see so many engaged with this helpful forum.

Hope you are doing well.

Did you see how I made a mistake in my reading of the trial instructions?

My rest week - turns out not to be quite so restful.

Seems I have to keep taking the TAK228.

Boo hoo.

But oh well,

Here I go,

Hugs,

Laura

[Maxjor in reply to Lindaura]

Boohoo is right! That rest week--on so many regimens is what those without this disease do not understand can be such a nice thing for us--and our bodies! I hope having just the one on the "rest week" will make it more tolerable and you won't have to go through your pattern you do other weeks. oxoxo

[Neona]

This is great news and maybe a lesson for me as I have resisted reducing the dose of my trial drug.

[Lindaura in reply to Neona]

Dear Neona,

I hope so. That’s what these trials are for.

Evidently, we are not supposed to be TOO enfeebled by the trial drug and they learn something valuable if we need the dosage reduced.

Hope you are not feeling too bad,

Hugs,

Laura

[jenny8c]

So so pleased to hear your wonderful news especially after the hard time you first had on the treatment. I feel as if my life is running parallel to yours at the moment as I was knocked for six on my first dose of my third line treatment of Cisplatin and gemcitabine. I am usually such a positive person but I felt so bad that I wondered if I had the strength to go on but it is amazing what improved anti nausea medication can do for you. Yes, like you, I have my bed days but if you know there is light at the end of the tunnel it is all bearable.

You really are an inspiration to so many of us, please keep us informed of your progress. xxx

[Lindaura in reply to jenny8c]

Thank you, Jenny,

So sorry for not getting back to you sooner, but I used my good days to work like a demon.

Now I will spend the weekend in bed, being pampered by my libel daughter and husband.

That’s a hard regimen you are in.

Fingers crossed it does the job!

Hugs,

Laura

[Litchick]

Hiya Laura, so absolutely thrilled for you. Know you are going to enjoy the good times very much- they are so richly deserved.

To all the other ladies who are now enjoying better days - I am blessed to be one of them - yay let’s go girls!

And to those for whom it’s not so good at the moment gentle hugs, warm wishes and hoping and praying you feel better soon.

Again, thanks to you Laura and all the amazing ladies on here who undertake trials - heartfelt thanks for your pioneering spirit and bravery. 😘

[Lindaura in reply to Litchick]

Thanks so much for your encouragement.

And yes, thanks so much for this forum where we all are able to, not only learn so much, but we receive the solidarity and warmth of knowing we are not alone.

Keep up the fight!

Hugs,

Laura

[Katiebairdie]

I’m glad to hear you are coping so well. Just the trip to London must be exhausting. Your so strong and positive, a great inspiration to all of us.

Kathy x

[Lindaura in reply to Katiebairdie]

Thanks, Kathy,

I am extremely lucky to have friends willing to accompany me on this journey.

They entertain me and support me. So the trip back and forth to London has become quite bearable, now that I am on the reduced dosage!

Hugs,

Laura

[Mptelesca]

You are the sweetest and I'm so happy you got your MOJO back! Your attitude and strength is so key in your recovery. You are just a delight and I love reading your posts. I always know they end well and they put a smile on my face.

Enjoy every moment and before you know it...you will be hitting those cafes again!

Good luck on your scan. Please let us know.

Keep going, girl!!!!

XOX

Marisa

[Lindaura in reply to Mptelesca]

Dear Maria, thanks so much for that.

And yes! I made it easily to my local coffee house, Boston Tea Party, in Bath, this Thursday.

I am feeling better and better on the good days.

That’s why I could not stop to answer any of my well wishers until today, when I am safely ensconced among a myriad of pillows in my comfy bed!

Hugs,

Laura

[Mptelesca in reply to Lindaura]

So happy you made it! The name of the cafe made me giggle. Funny!

Glad you are resting in your comfy bed! I am in my comfy bed surrounded by a trillion pillows as I write. Yesterday I spent the day chasing my granddaughter Eleanor. She is almost three and has jets on her shoes. Then I cooked, played a board game and watched some comedy with hubby. Today my body says to let the pillows keep absorbing me. Done!

You sound like you’re on the right road back to same strong Laura! Keep going and enjoying!❤️❤️

Xox

Marisa

[Solange]

I'm so pleased for you , Laura, that you're feeling so much better. Long may it last. Love, Solange xxx 😊

[Lindaura in reply to Solange]

Thank you, Solange,

Long may it last!

Hugs,

Laura

[Birdsong222]

Hi Laura

I've not been logging on so frequently lately as l have felt very positive and well, so just been living my life. Really pleased to read your post and so very pleased for you. This cancer journey has so many ups and downs. Long may you feel this way and continue to enjoy your life with a Big Smile on your beautiful face. Sylvia x

[Lindaura in reply to Birdsong222]

Thank you, Sylvia,

So nice to hear from you and that you are feeling well.

Long may it last!

Hugs,

Laura

[Artgreen]

Fantastic news! So glad things are so manageable xxx

[Lindaura in reply to Artgreen]

Thank you so much,

What a difference a reduced dosage makes.

Hugs,

Laura

[1916]

Gear news dear Laura .

Ann xx

[January-2016-UK]

A 50% reduction in CA-125 sounds brilliant, especially as you now have a reduced dose. Your hair looks good in your profile pic too!

[Lindaura in reply to January-2016-UK]

Thanks. I am feeling pretty optimistic.

My daughter took that photo of me in my new wig.

When my hair finally returns, a year from now, that’s the colour I will dye it!

I have a similar one that is extremely light weight and I can where it all day and half the night and feel much more like myself.

Hope you are doing well.

Hugs,

Laura

[Gemimablackvelvet]

Hi Laura,

so happy for you about everything. It all seems surreal. Almost miraculous. Please God may the treatment continue to rid you of this vile disease. You're the Queen of HealthUnlocked "Long may you reign"

I'm having my 3 month scan tomorrow (today actually as it's now 12.45 am) I'm petrified. It's my first recurrence. I'm on carbo/caelyx which I'm tolerating ok with a few of the problems I expected. It's 2 weeks today since my last infusion but the side effects are still there. I have mouth ulcers and my hands and feet are burning. The oncologist intimated the chemo would not kill the 2 tumours entirely and he may have to try something else. Oliporab was mentioned, even a second operation was not out of the question. All depends on the CT scan I suppose.

I'm 75yrs old but like you I still have a lot of living to do and I'm not ready to cave in just yet. Your new photo is amazing by the way. I've bought a wig in readiness for hair loss. It's noticeably thinning but hanging on in there. Not happy with the wig as I feel it's a little too long and not quite as light blonde as my own, the hairdresser is going to rectify the length hopefully.

I should go to bed now although I feel sleeping is a waste of whatever life I have left. Gosh! I've outwritten my welcome on here. Good night God bless Laura.

My love to you as always.

Angela xx

[Lindaura in reply to Gemimablackvelvet]

Dear Angela,

I met a very vibrant 92 year old woman at the hospital yesterday, who had her first bout with breast cancer when she was 72.

She’s been fighting it all this time, but doing amazingly well after 20 years!

So, that’s great that you have been offered so many options - even surgery.

Let us know how your scan report comes out. How is your CA-125?

Is that a good marker for you?

I escaped most of the bad side effects, except the first week of exhaustion, on Carbo/Caelyx and kept my hair. I did get the occasional mouth sores and found an antibacterial medicinal mouthwash at the pharmacy that worked well.

Seventy is the new fifty!

Best wishes to you in your scan and everything else,

Hugs,

Laura

[Gemimablackvelvet]

Thank you Laura, you have a way of making us all feel better.

I love that story about the 92 year old lady, incredible!

My CA 125 was down from 46 to 34 at the last count but not heard the results of the latest test. I phoned the CSN last week to ask but she said they hadn't come through yet. I'm trying to resist phoning again in case it's risen. I had the recurrence when my count was just 36 so not very high. By the time I started the chemo again it had risen to 46.

I'm trying to make the best of our lives by giving all I can in many ways but I fear my husband will tire of being the chauffer, nurse and carer. I have a cleaner and gardener so I try to keep his workload down to a minimum. My daughter lives across the road and gives me moral support. She encourages me to go out, go on holidays and generally keep me motivated. She also encourages me to spend money on myself.

My love to you,

Angela xx