More Laura & the DICE TRIAL

[Lindaura]

Well, turned out to be a hellish week.

Lowering the Taxol did help the first two days, but now I realise how much the TAK228 is affecting me the rest of the week.

I had awful unrelenting diarrhoea, and no matter how much Ondansetron and Loperamide I took, it was unstoppable.

I nearly fainted before I could make it back to my bed, after struggling to get to the bathroom. Collapsed on the stairs outside my door and messed myself.

Was finally able to crawl into the bathtub to wash myself, crawled back to bed and slept Til 1:00 pm.

I have been nauseous and vomiting also, but mainly too weak to move.

I go back to the Marsden with my friend tomorrow. My plan is to see if they can lower the dose of the TAK228 now.

Also, I will ask for Emend. That could help in those first few days when vomiting was a problem.

Otherwise, I am afraid that I have to drop out of the trial. I can’t spend another week like that. This is no way to live.

How is everyone else doing?

I hate to be such a downer. If it was just a matter of staying in bed for three weeks, that would be one thing, but not being able to successfully control the rest of my bodily functions is too awful.

Sorry,

Laura

[Elfed]

I’m so sorry to hear this, I do hope they can do something to ease such horrendous side effects.

Do you feel well enough to travel by train, or has it all eased a bit.

I’m getting worried as going today to see if I’ve got the real thing or not, then start either Wednesday or Thursday.

I do hope everything works out for you and they find a solution x

[Mptelesca]

Oh Laura! You poor thing! Aweful when you feel so week. Hopefully they will adjust the second med as well. I’m sure you are replenishing your liquids but please be careful with getting in and out of bed. Am I seriously telling you what to do?! I know you know all this. Just worried. I know you will get better. You are pretty tough and determined.

Please keep us posted. Hang in there, beautiful lady.

Xox

Marisa

[delia2]

Hi Laura. It sounds dreadful and dangerous. You must be getting dehydrated. What category of drug is that? I hope you can work out a better form of treatment. Hugs!

[Flamingobeef18]

So sorry you are going through this. It certainly does not sound sustainable as it is. I think we become super strong and tolerant of so many unpleasant things with this disease but there has to be some limits even for us.

I do hope they are able to sort something out to manage these dreadful symptoms but whatever happens no one could ever say you did try your darnedest.

Lots of love

Juliax

[Hidden]

Hi Laura - That sounds awful. Good Luck at the Marsden today here's hoping they have some answers. Sending gentle hug xx

[bluepeterella]

Really sorry to hear and hope there is some way they can help. I agree though that it’s no way to live if you are so ill that you can’t enjoy things. Lowering doses seems a good way to go x

[Pendle99]

Oh Laura, you poor bean. I have been thinking of you this week wondering how you are getting on. You can't go on like this as it is no quality. Let's hope the Marsden can get you sorted today so you have a better week. Am thinking of you today as you go to The Marsden and I will be sitting in A12 in Bath xxxxx

[Lindaura in reply to Pendle99]

So how did YOU do today? What week are you on?

My lovely blonde hair is falling out suddenly at an alarming rate. I wonder if it will stop, in the two weeks without Taxol.

It still amazes me that we all react so differently to the same drugs.

I have not heard from anybody taking the TAK228, but I sure would like to.

Hope you feel okay for the next several days, and then do you get the next week off?

🙀hugs,

Laura

[Katiebairdie]

So sorry you’ve had such an awful week. I have been following all your progress and think in your shoes I would have taken myself to hospital.

My fingers are crossed for you and really hope you can find a way forward.

Xx

[Welshandproud]

Oh Laura that sounds horrendous. I'm so sorry that you are having to go through all of this. I hope that the Marsden are able to lower your dose and give better drugs for side effects xxx

[BP44]

Oh Laura, it's so horrible for you to go through this. When things we take for granted go wrong due to the drugs, it feels like the end of the world. But it will get better one way or the other. I'm hopeful that the Marsden will take the sensible approach with this. I've not met any other ladies on DICE whilst I've been having treatment so can't compare your side effects. I'm doing ok and had my 3rd Taxol yesterday but it's been plain sailing (you know what to expect with this drug). We'll both be having our 'rest week' next week so hopefully a chance for the body to recover. Good luck today, hope it goes well.

Belinda x

[Spirit22]

Oh so sorry you poor thing, sounds awful. Hope they can sort something out for you today fingers crossed for you Xx

[Supergran38]

Oh dear, that sounds awful. Really hope you get some help tomorrow, you can’t carry on like this. Good luck and keep us updated. Xx

[Maxjor]

Does not sound good. You are the best patient the medical team could have because you are so aware of what is doing what to you (mostly) so my hope is if they can lower the TAK228, that will make a big difference. Also amazing that after taking Ondansetron you still had diarrhea so that is of course indicative of these drugs causing it to be unrelenting--maybe it's the TAK228 since you had Taxol before and this did not happen. Fingers crossed they find a solution--you are right, no quality of life is not the way to go if it can at all be avoided. Hopeful for you Laura! oxoxox Judy

[TarbonNZ]

So sorry Laura, I do hope things can be sorted out as I know how much this opportunity means to you. At the end of the day you need to do what is best for you. Much love Therese

[IrishMollyO]

Dear Laura

I'm so sorry that you have to go through such awful side effects. Bowel problems are already part and parcel of this rotten disease which worsen when you get treatment. Scientists can send people the moon figure out all the secrets of the Universe so why the hell can they not come up with treatments that doesn't cause either constipation or diarrhoea ?

Forgive me for ranting Laura but I'm so angry reading your story. You are so knowledgeable about every aspect of this disease and willing to take part in the trials that you deserve to get a good response. I hope and pray that the hospital will have a solution that will ease the side effects and allow you to continue the trial that you worked so hard to get onto. Take care

X X X

💚💕

[Seasun36-uk]

Really hope the Marsden can pull out all the stops for you today Laura xx

[sticky3006]

Good luck Laura with your next appointment and I hope your'e on the mend soon. What a nightmare for you. It must be so difficult when you really want to continue with the trial but feel so awful you probably think sod it. Hopefully the Marsden team can come up with a plan to get you back on the road to recovery but still continue with the trial. Keep us updated, sticky3006 xx

[Litchick]

Oh Laura, gosh how awful for you - I’m so sorry to hear this.

Did just want to pass on to you that whilst on first line Carbo taxol I had awful tummy trouble especially diarrhoea - and pooed my pants a few times ( once whilst at outpatient appointment!!). But purely by accident - excuse the unintended pun discovered it was the lansoprazole I had been proscribed for indigestion side effects that was causing it. As soon as I stopped so did the runs- had indigestion but went back to omeprazole . I did wonder if maybe you were taking that drug too? Could it be that?

I do hope that they have come up with a plan today that helps and I’m praying you can keep on the trial and get the b***** sorted.

Sending very gentle hugs .xx

[Lindaura in reply to Litchick]

Sadly, I am not allowed Omeprazole of any kind. Both the TAK and the Taxol ate notorious for diarrhoea, so we just have to see if it ceased this week.

Hugs,

Laura

[cd25]

Hi, so sorry to hear you're having such an awful time of it.

I really hope things improve for you soon.

My thoughts are with you .

Cari