Bulletin! Update for Laura and the DICE Trial.

[Lindaura]

Thanks to everyone who wrote to me offering commiserations and support!

The wonderful team admonished me for not calling them during the week, but now have taken everything under consideration and have decided to have me skip this week’s Taxol and the TAC228 and they will check up on me on Thursday.

I am to come back to London next week, but just for a check up and if I am okay, no Taxol, but probably a reduced regimen of the TAK228.

And they will add Emend to get me through the vomiting period!

So, I am off to home early. Feeling better!

Hugs,

Laura

PS: I was so bad off this morning, I had to have a strong young man carry me to the train.

We got a special vehicle to pick us up at the platform in London to get me to the Taxt.

I am much better now!

Thanks again everyone. And remember not to suffer in silence but to call your CNS if effects become intolerable.

Hugs and more hugs

💖

[Pendle99]

So pleased for you. Emend is my best friend xxx

[delia2]

I’m so glad to hear they are flexible and you can have a break to recover a bit. Keep us posted!💕

[Hidden]

So glad to hear you are feeling better, what a week! I don’t think I would have persevered, you are one gutsy lady! Here’s hoping you fair much much better on just Tak228. Xx

[Elfed]

So glad they have come up with a solution.

I’ve just had a call and been told I wasn’t picked for the trial, so just taxol 🤨.

Hope your journey home wasn’t too difficult

Kim x

[Lindaura in reply to Elfed]

Have to say, congratulations.

Taxol is a mighty drug and it will destroy your cancer, hopefully without destroying you.

This trial drug is probably way too rough for us to bear...

Hugs,

Laura

[marylondon]

Hoping this week’s respite from the drugs & Emend really helps you Laura . What a dreadful time you ve had .

Mary x

[Jud15]

Good to hear they sorted you out and you've got some breathing space as it sounds like you need it

J

[Welshandproud]

So pleased that they were willing to help and that they have offered a way forward. You must be exhausted. Have a relaxing evening xxxx

[Litchick]

Silly me , missed your latest and replied to your older post. So glad they had a plan and you are feeling a bit better. More hugs coming your way- we are all rooting for you.xx

[Lyndy]

Oh well done! Here’s hoping it sorts it all out for you xx

[Seasun36-uk]

What a welcome reprieve Laura! Xx

[Doglover1410]

Oh Laura, I didn’t see your earlier post but please take their advice and contact them if you need to. I hope the reduced drugs give you some relief from those side effects, and the week off to build up again.

Hope it all goes well for you, look after yourself xx

[Mptelesca]

So happy you are feeling better and going to let your body mend for a week! That is horrible that you couldn't even walk. I know how much that bothers you since you're always so active.

Great advice to us all. Continue feeling better and better each day!

XOX

Marisa

[gmc920]

Thinking of you, Laura, and so glad they have come up with a good plan. Hugs, Gina

[Flamingobeef18]

OMG Laura what an awful journey for you. Please do not put yourself at such crazy risk again. The best trial in the world is not worth it if you die getting there.

Why did the hospital not arrange transport home for you?

Juliax

[CarolynA]

So sorry I missed your earlier post but am really pleased that the staff have been very helpful and you are already feeling better. Take care, go gently. Sending love and a gentle hug. Carolyn x 🌸

[Hidden]

Hi Laura

So glad they sorted things out. Think it's very brave of you to have managed the journey to London.

Hope you continue to improve.

Wishing you all the best

Janet

[Maxjor]

I am so glad they are allowed to let you skip a week on a trial (although I am sure all trials are different) and that you feel better. If you end up just getting the TAK228 only next time, you should be able to tell if that is the main culprit (or maybe it won't be due to a potentially lower dose.) Good news all around Laura and enjoy the return of your strength and feeling better! So happy to hear. oxoxo Judy

[Neona]

Hi Laura, I do this trip to London every fortnight and really sympathise. I book the mobility vehicle at Paddington every time now and it is brilliant!

[Katiebairdie]

I think you were very brave to even get yourself to London. Enjoy your free week let your body mend.

Also don’t forget your team are there to talk to you.

[ellseybellsey]

I had Emend when on Cisplatin it was the best anti sickness med I had been given, I am glad they are going to continue with the lower dose of the Tak228, rest now and let your body heal.

Ellsey xx

[1916]

Dear Laura

Just seen your post , hope you are feeling better today.

Best wishes

Annxx

[Gemimablackvelvet]

Hi Laura, just to hear you say you’re feeling a little better is so up lifting

You’re trying so hard and you will get it right eventually. So many ladies caring about you. Taking the time to help others when you’re going through a living hell, we all wish you the very best.

My love to you

Angela xx

[jenny8c]

Hi Laura, That you are feeling a bit better comes through in your words. I am so pleased as I think I have just gone through something similar so I really really sympathize. How you got on a train last week I will never know - you are one strong lady.

I had the first dose of Cisplatin and Gemcitabine last week and it knocked me sideways - no appetite , constant nausea and sickness and unbelievable fatigue and my significant other away golfing (didn't mind - he needs a break from all this). Should have had another dose of Gemcitaibine yesterday but they have decided to leave it out.

Just like you, I got told off for not contacting the chemo ward or the cancer ward so other ladies reading this please learn from Laura and me and if you feel awful let someone know - don't be like us and wait for it to improve over many days.

This is the first time in over a week I can face my computer such was my chemo brain and I expect you were the same - hence the late reply.

Onwards and upwards girl as we continue our fight against this awful disease and let's enjoy this treatment free week.

Love and hugs

Jenny xx

[Lindaura in reply to jenny8c]

Yes, you are right.

I think the trouble is that most of us have gone through such a hard time during first line, when we were first diagnosed with advanced OC, we just thought bad side effects would be our lot.

Anyway, I will be more communicative from now on.

Meanwhile, my hair is disappearing rapidly, or actually, leaving my head and landing all over the place. I have a bucket of blonde hair by my bed. Very sad to see it go.

But my daughter is rejoicing, declaring that it means the Taxol is still in me, busily destroying cancer cells.

I found my new blonde wig and I shall visit my local hospital tomorrow for blood tests.

I do feel stronger today and my appetite had me eating three cheese and tomato sandwiches today!

Hooray!

Hugs,

Laura

[Hidden]

Emend is super! Well done Laura on getting through all that. You are mighty! Keep strong! 🤗🤗🤗