Laura Update on the Dice Trial - Cycle 5

[Lindaura]

Hello everyone,

Sorry to be so late with an update.

I was waiting for the end of the 4th cycle to get my CT scan results.

Also, since they lowered my dosage, I have been very busy with my little Holiday Let Business, especially during the holidays.

So now: my CA-125 has been steadily dropping each month, from the start: 198, to 89, to 57, to 39 and a month ago it was 29.

That felt amazing.

However, my two month scan still showed the three remaining nodules.

2 had shrunk considerably, and one had stayed the same.

That was disappointing to me, but the researchers considered it a win, of “stable disease” and when my CA-125 came in at 29, there were smiles all around.

Fast forward to my tests for cycle 4.

My CA-125 went up to 53, something I found totally perplexing. That’s almost double what it was a month ago.

Today I received the very precise results of my CT scan. It showed that except for the three nodules, I was free of other spread. Clear lungs, bowels, and all other organs.

However, the two nodules that had shrunk last time had grown larger than the were at the beginning of the trial. The one that was stable is still l stable.

The research doctor assured me that the progression was still slight and remained within their “stable Disease”permitters.

I try to be optimistic, but I can’t help but feel apprehensive.

The trial has definitely slowed down any growth, but it’s effectiveness seems to be waning.

My little family and I wonder what the next plan will be after this trial ends in March.

Hope you all are either doing great or keeping up the battle.

Much love and courage,

Laura ❤️🥰❤️

[Hidden]

Could they up the dosage now that you have stabilised.?

[Lindaura in reply to Hidden]

Dear Lyn,

They won’t up the dosage because this has proved to be an effective dosage (CA-125 did get down to 29), but had proved to toxic to me at the higher dosage. As physicians, they cannot give me something they know will hurt me.

But, what we do know now, is that this cunning disease figures out ways to change so the cancer cells are no longer effected by a particular chemo.

So they are keeping me in the trial, probably until the end, and then, who knows?

Being BRCA positive usually means, that although we are most likely to get cancer in the first place, we are more receptive to treatment.

This is evidently not always the case.

But my progession is small, so I remain optimistic about future options.

🤗 hugs,

Laura

[Hidden in reply to Lindaura]

The recent article I read regarding T cells immune therapy looks very promising, it even mentioned Ovarian cancer, which is a first! We just have to all hang in there and hope a cure is imminent very soon. Take care x

[TarbonNZ]

Hi Laura. I was just going to put a post up asking if anyone had heard from you. I have my fingers crossed that this is just a blip for you.

Like you, they can only stabilize my disease, however the current treatment I am going through for third line, of Carboplatin only, is working so far. I just hope the end scan shows that the main nodules have either reduced or even better cannot be seen, but more importantly that the liver Mets have gone. They were the ones that really frightened me when they appeared. Keep strong. Therese

[Lindaura in reply to TarbonNZ]

Thank you, Therese.

I will try to be a better member in future.

I guess I just got caught up in my own world.

Hope your next scan is a good one!

Hugs,

🥰

Laura

[TarbonNZ in reply to Lindaura]

Don't worry about being strong. I fall down the rabbit hole more than I would like, however I think we are entitled to that., and it is good being able to vent somewhere where people understand. xx

[MissEd]

Hi Laura, my mum had similar on the octova trial. 43% shrinkage and then slight growth. She is on the dice trial now, so maybe they will be able to offer you another trial? Xx

[Lindaura in reply to MissEd]

Good to hear.

Thanks.

I certainly hope they offer me something.

I am still holding out hope for Prof F to agree to surgery.

If I only have three small modules that won’t go away, why can’t we take them out surgically?

That’s what I want.

Let them be gone!

Hugs,

Laura

[Gemimablackvelvet]

Good morning Laura, strange position to be in. 20/20 situation. On one hand you’re kind of elated one other you’re deeply disappointed. Let’s all hope that by March your results improve 100%.

My love to you

Angela xxx

[Lindaura in reply to Gemimablackvelvet]

Thanks, Angela,

I know I am in pretty good shape.

Just want to know I can stay that way.

Still amazes me how much I have yet to learn.

Hugs,

Laura

[Gemimablackvelvet in reply to Lindaura]

Hi Laura, we all have a lot to learn. It’s like open university! I do as much research as I can late at night but forget what I’ve researched by the next morning. I’m too tired to write it all down, though I know that I should. I read in The Mail last Sunday that immunotherapy is not as a miracle cure it’s hailed to be and doctors fear it can also make cancer worse. So once more it’s a 20/20 situation. I have also read up a lot on Plasma Jet surgery which as you probably know is used to mop up the cancer that normal surgery and chemo can’t reach and is much less invasive. Has this been suggested to you the RM or Bristol. We don’t hear much about it and my surgeon didn’t seem to have much faith in it. They don’t use it at my hospital up in the East Midlands or Yorkshire but I know they do at RM and Bristol. I’d be interested to know if you’d researched it. You do seem to have much more knowledge than a lot of us. It’s late again but I’m not sleeping well and find the later I go to bed the more tolerable insomnia is.

My husband seems to be able to sleep a good 8/9 hours whilst I lay awake worrying and searching for answers and hope. Crazy isn’t it!

All the best to you,

Love Angela xx

[Lindaura in reply to Gemimablackvelvet]

Dear Angela,

My surgeon at the RUH, Royal United Hospital, in Bath, used the Plasma jet as part of my surgery. He told me he “zapped” over 200 lesions on my intestines.

Shocked that I had been riddled with so much cancer, I felt assured that he had got everything, but if course, the sneaky disease still came back.

Sadly, he has refused to perform another surgery on me, even though that one went swimmingly.

I guess it won’t hurt to ask at the Marsden, but feel that Prof F is my best bet.

Hope you get some restful sleep.

These are hard times for so many of us.

Hugs 🥰

Laura

[Gemimablackvelvet in reply to Lindaura]

Thanks this speedy response. Didn't do too badly though. I'll take it all on board. Really sorry it didn't work 100% for you. I was pinning my hopes on that. I'll try to get some shut eye tonight. I'm really tired.

Lots of love

Angela xx

[Litchick]

Hi Laura,

OC really is taking you on a roller coaster ride . I am inclined to say that if the major organs are ok that’s a real positive to try to focus on. Easier said than done I know.

So sending hugs and hopes.

Jan. x

[Lindaura in reply to Litchick]

You are right, Jan,

So far I am really lucky to be so clear otherwise.

Lets hope i stay that way.

Hugs,

Laura

[Neona]

I have had a similar situation on my trial with the last scan showing decrease in the liver but increase everywhere else- only slight but in the wring direction. Still partial response but worrying. Next scan in Feb.

[Lindaura in reply to Neona]

Me, too.

Next scan in February.

But we are at least in a trial:research situation and are helping others with our input and hopefully this trial will lead to another better option for both of us.

[Shorty864]

Dear Laura, was about to send you a mobile phone message, but I was hoping this silence meant you were busy working.

Sorry to hear about the mixed results, but hopefully by March things will have changed.

Often think about surgery and if it would be possible to remove these beastly little nodules.

I think I wrote on here my situation - stopped the Caelyx as I am so fatigued and continuing with Avastin as my CA is stable even if at a 2000!!! No trial has come up as yet, but still hoping and keeping my ears to the ground!!!

Today I found myself a personal trainer to hopefully get me a little fitter and away from my divan!!!

So nice to hear from you. Lots of love Anne XXX

[Lindaura]

Well, Anne,

You still sound amazingly upbeat for someone with a CA-125 of 2000!

I assume that your bowels are manageable and you don’t have any ascites or pleural effusion.

You sound pretty resilient.

Having a personal trainer seems very daring. I salute you!

I hope you remain stable, have a good time with your personal trainer and that you generally feel better soon.

And I hope a new treatment will appear that doesn’t wipe you out.

Best wishes and hugs,

🥰

Laura

[shortfriends]

Dear Laura,

It is good to hear from you, although I have been hibernating myself! Even a little progress is positive and with your resilience I think and hope you will continue to improve or you get the operation you want. I often think of you, you give so much hope to the others, we are all routing for you and sending positive vibes and good wishes. love and hugs Pat (short friend) xx

[Lindaura in reply to shortfriends]

Thank you,

Pat,

Yes, I must concentrate on the positive. My cancer is not out of control and I have plenty of options.

But I am about to post something that has cast a pall over the last few months, so you can see why I feel so negative.

Hugs,

Laura

[Birdsong222]

Hi Laura just catching up on posts. There is so much positive stuff in your post which is what you must focus on. I also saw your post about the death of Penny and can fully understand what that has felt like for you.

Personally l find it hard to read each and every RIP notification. Strange how one can find these so tough for ladies whom l have never met. Perhaps because it is a painful reminder of my own mortality.

Good luck with your next ct scan and l hope that your daughter is doing well.

Stay positive.

Sylvia x

[Welshandproud]

Hi Linda what a double edged sword. Some real positives in there with your major organs being unaffected but so disappointing that the other two nodules have grown. Let's hope that the next few sessions of chemo bring about some change to these modules too. Sending you lots of love xxxx