Laura and the DICE Trial - Be Careful What You ... - My Ovacome

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Laura and the DICE Trial - Be Careful What You Wish For!

Lindaura profile image
74 Replies

Well, I have been sick as a dog since Thursday afternoon. Basically the same side effects I suffered with first line, except, thank goodness, no bone pain!

Just terrible debilitating fatigue, dizziness, loss of appetite, achy joints, sore throat and head ache. But what makes this even harder is that I cannot take Omeprazole with the targeted drug, and the replacement, Ranitidine, just does not work for me.

Consequently, my stomach is boiling with hot acid and the only remedy that works for me is to throw it up. Not fun.

I am not sure if the targeted drug and the Taxol work together to destroy my bone marrow, but I am suddenly weak and pale and totally breathless if I walk up one flight of stairs.

I am worried that I won’t be able to stay the course and feel like I will wind up with a stomach ulcer if I do.

Anyway, I go back to London on Tuesday morning and I have asked a friend to accompany me from Bath, to help me get on the train and to accompany me to the Royal Marsden.

I was healthy as a horse at the start of the trial, last Tuesday, but now I don’t Think I can walk to the train platform myself.

I always heard that weekly Taxol was easy to tolerate, but I am not doing very well already and if side effects are cumulative, I am doomed.

Here’s hoping my beautiful research nurses will think of something to help me.

Perhaps a lower dosage of both the targeted drug and the Taxol.

How is everyone else doing on weekly Taxol?

Sorry to whinge.

Just so disappointed.

Hugs to everyone , from my basement bedroom (was my husband’s music studio, but next to a Loo).

Laura

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Lindaura
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74 Replies
Beauxbelle profile image
Beauxbelle

Dear Laura,

Vicki was on weekly Taxol and was fine, but when she went on a trial called Onyx she didn’t make it to the end, she had to give up, it was making her so ill.

Take care and make your decisions with as much information as you can, especially where ‘ordinary chemo’ is concerned and how this trial will affect you if you wish to change back.

Love and hugs to you and hope you feel better soon

Barbara xx

Lindaura profile image
Lindaura in reply to Beauxbelle

Thank you, Barbara,

This journey is very strange. The twists and turns, our hopes high, then low.

I would not wish it on anybody.

Hugs,

Laura

Doodledays profile image
Doodledays

I’ve been on weekly pacletaxol and fortnightly Avastin for 10 months now with one recovery week off a month. Effects are cumulative but still I think can be very different side effects for different people. I have many, varied unpleasant side effects but not as devastating as you are experiencing. I do hope you can get some good advice and help soon. Take care. Xx

Lindaura profile image
Lindaura in reply to Doodledays

How are you coping? Are you able to work? Do housework?

If the effects are cumulative, does hat mean you have to rest more?

I am feeling perkier tonight.

Maybe once I am past the TAK228 capsule time, I will begin to cope.

Then I will know to just give in to bed rest for the first 4 days and try to be normal for the last three.

I can live with that.

Hugs,

Laura

Doodledays profile image
Doodledays in reply to Lindaura

I wasn’t able to go back to work. Fatigue is worse than last years 3 weekly chemo. It’s not a tiredness you can work through. Get a boost with steroids for couple of days then few days nauseous and more tired then day b4 treatment again often Okish. Just learn to work around better days. I am on own at home now but family nearby and always willing to help but I am stubborn and do what I’m able to do. I think it’s the stubbornness that keeps me going. My poor dog has just been diagnosed with bowel cancer plus lymph node involvement so I have to focus on her care and well-being.

Neuropathy/numbness in feet, sinus/nose problems, horrible taste and upset digestion/bowels is now the new standard. I enjoy the days I can and make plans for them when I can. Other days I do what my body tells me I can. I’m busy most of time and enjoy being alive and appreciating all my friends, family and beautiful nature. It does seem unreal at times.

Lindaura profile image
Lindaura in reply to Doodledays

Thank you for that. It makes me feel less alone- and less enfeebled.

So sorry about your dog. What a heartache.

Glad you have good days and now I guess I will have them, too, maybe Monday.

Hugs,

Laura

Doodledays profile image
Doodledays in reply to Lindaura

Here’s to good days 🤗💖, take care. Xx

mupash profile image
mupash in reply to Doodledays

HI DOODLE-

JUST SAW YOUR POST AND EVEN THOUGH IT IS 3 MONTHS OLD, JUST WANTED TO SAY I AM SORRY FOR YOUR SITUATION AND TO HEAR ABOUT YOUR DOG. I TOO AM A DOG LOVER AND KNOW WHAT IT IS WHEN THEY GET SICK. HARD TO DEAL WITH WHEN YOU'RE WELL.... AFRAID TO ASK HOW THINGS ARE BUT HOPE YOU ARE BOTH BETTER NOW. MY HEART GOES OUT TO YOU.

LEE

Doglover1410 profile image
Doglover1410

Oh no, please watch that breathlessness, I had to have a blood transfusion with it.

I really hope it eases off soon and is just the first time and you can stay on it. But please don’t suffer.

Sending hugs x

Lindaura profile image
Lindaura in reply to Doglover1410

It is curious. It seems much too soon to have my bloods go all wonky!

I won’t panic.

See how I am tomorrow.

Hugs,

Laura

sticky3006 profile image
sticky3006

I'm so sorry you're having such a rough time. It must be draining and exhausting. What a nightmare. Good luck this week when you back to the Marsden. Lets hope they can suggest something to help you through this rotten time, sticky3006 xx

Lindaura profile image
Lindaura in reply to sticky3006

Yes,

I am counting on the good graces of my three lovely research nurses to figure out a way to keep me in the trial!

Hugs,

Laura

Elfed profile image
Elfed

I’m so sorry to hear you’re suffering so much. I do hope it’s just a starting blip.

It’s so difficult to find anyone else on this to see how others are managing.

My dates been put back, so now finding out if I’ve got the real thing and starting 8th October, my 6th wedding anniversary, I could think of better things to be doing 🤔

Lindaura profile image
Lindaura in reply to Elfed

When do you find out?

This is all so very mysterious and I just hope we get ourselves sorted out quickly.

Good luck,

Laura

Elfed profile image
Elfed in reply to Lindaura

As far as I know I find out on 8th which trial I get, then start on the 9th.

So far Southampton hospital have had 4 ladies put in for the trial and they all got the placebo, so they’re hoping I’ll be the first.

I do hope your side effects settle down soon 🤞

Seasun36-uk profile image
Seasun36-uk

Hi Laura,

Can you ring the research nurses for advice?

I don’t suppose they work at weekends...

Could you add in Gaviscon or similar for your acid tummy?

Would your GP be able to help?

Really hope you can tolerate the DICE.

Glad your friend is accompanying you on the train.

Love & hugs xoxo

Lindaura profile image
Lindaura in reply to Seasun36-uk

I have been trying different anti acid liquids, but all the Gavascons make me sick.

However, there is an American brand called Maalox, that tastes fine and works a treat, but it has aluminium in it and I am afraid it will rot what few brain cells I have left.

So now, I have settled on Milk of magnesia, and that works okay. Just have to not drink too much as it could have a laxative effect!

I am better this evening, so maybe I will be stringer tomorrow.

So happy that I din’t Have that bone pain!

Thanks for your advice,

Hugs,

Laura

Oh Laura! devastated to read this. I can only commiserate and wish you luck next week at having your doses reduced. I do hope in the meantime you begin to feel better very soon.

Gentle Hugs xxx

Lindaura profile image
Lindaura in reply to

Thanks, Lyn,’I am beginning to perk up tonight, so maybe this will pass and I will be okay by Tuesday!

I will let you know how I do.

Hugs back at you,

Laura

Litchick profile image
Litchick

Oh dear Laura, so sorry to hear your feeling poorly and hoping you are starting to pick up a bit. Sending a big hug.xx

Lindaura profile image
Lindaura in reply to Litchick

I think I am picking up a bit. Thank goodness. Tomorrow I plan to wash my hair. That will be a good test, as I thought about it today, but decided not to try yet.

I am not taking a shower, but just using the shower hose and bending over the tub. I don’t feel ready to climb inside the tub and climb out again.

Ha! It’s the little victories that count.

Hugs,

Laura

delia2 profile image
delia2

Hi Laura. What you’re going through sounds awful. I felt like that on frontline but only for about one week out of three. I’m being tested for recurrence and just dread having chemo. Like you I finally feel good despite the cancer’s coming back. I do hope you continue to feel better and maybe they can adjust your dose.

Xo

Lindaura profile image
Lindaura in reply to delia2

It is a drag. I felt great when I started and suddenly being wrecked is simply weird.

I have to say, for my first recurrence, I did really well on Carbo and Caelyx. I had to go to bed for the first week, but I had three good weeks after that, which made my life a lot more normal.

So, I hope you are okay and if you do have to have Carbo and Caelyx, you can manage equally well.

Hugs,

Laura

delia2 profile image
delia2 in reply to Lindaura

Thank you!

Cristinpaige profile image
Cristinpaige

Hi.... I’m on taxol every 21 days and it knocks me out starting day 3 after chemo till day 6/7. It is cumulative and my dosage has been reduced by 15%. Still feel the same since first infusion. No worse or no better. I’m basically out for about 5 days. All the same exact side effects you’re having. I do feel back to 100% before next treatment and mostly 100% 6-7 days after chemo.

Lindaura profile image
Lindaura in reply to Cristinpaige

That’s really good to know.

My daughter and I were talking about it and I do remember that in first line the Chemo kicked in on day 3 and just got progressively worse.

I was sick with the cancer then though, so I never had any really good days until the end of treatment.

But now, I am hoping to be okay to travel on Tuesday and hoping to figure a way to stay in the trial.

Hugs,

Laura

Flamingobeef18 profile image
Flamingobeef18

Hi Laura

So sorry you are having such a rough time.

I am just on the weekly Taxol and just two infusions in. After the first infusion I was feeling very similar to what you describe. I was unable to do anything, even dressing and washing were totally beyond me. But on the day before my 2nd infusion I was feeling okish and was able to visit some friends.

I too had prepared myself that this was going to be my new routine but after infusion number 2 I felt much, much better. I was a different woman.

Just hoping the good times last and hoping you have a similar experience.

Love Juliax

PS if it is specifically omeprazole which you cannot take there are lots of other “prazoles” which may help.

Also I have started sleeping on a bed support which elevates my pillows and has changed my life by eliminating 90% of my acid reflux and all for around £20!

Lindaura profile image
Lindaura in reply to Flamingobeef18

Thanks for that! Maybe I too will perk up after the second infusion, although I am also taking the targeted drug, which really has the same list of side effects as Taxol (but no neuropathy).

So I just don’t Know.

I washed my hair today, bending over the tub, not climbing in.

Now I am totally exhausted and I have bee resting for three hours!

I can’t take anything with TAK228 in the “”Proton Pump Inhibitors “ area, so no prazoles of any kind.

My husband bought me some low dosage Zantac, which is Ranitidine, so I am augmenting with this plus Milk of magnesia.

I am good right now, because I am eating Rice Crispies for breakfast with soy milk which is somehow very soothing.

Thank you for your advice,

Hugs,

Laura

January-2016-UK profile image
January-2016-UK in reply to Lindaura

Hello Laura, I read earlier today that there maybe problems with Ranitidine and Zantac and some countries are withdrawing it from sale.

It’s on the BBC website bbc.co.uk/news/health-49868852

You might want to look further into using it.

Hope the rice crispies and soya milk went down a treat. Helen

Lindaura profile image
Lindaura in reply to January-2016-UK

Thangs, Helen,

Golly, just when I’ve go used to it. It takes about two weeks to become effective, unlike Omeprazole, which works almost immediately.

But I have been prescribed another H2 inhibitor and I will switch to that.

Thanks so much for the heads up.

Rice Crispies are amazing!

Hugs,

Laura

Jud15 profile image
Jud15

So sorry you're feeling so awful, hope that it might be a little better today.

Judith x

Lindaura profile image
Lindaura in reply to Jud15

Thanks Jude,

I am feeling better today.

Just a little exhausted...

And tomorrow is another day!

Best wishes,

Laura

Eriksendi profile image
Eriksendi

Sorry to hear you haven’t reacted well to the first dose, I only hope things improve for you. X x

Lindaura profile image
Lindaura in reply to Eriksendi

Thanks so much.

I guess the disappointment is the worse thing, as everyone seemed to indicate that weekly Taxol was pretty manageable, but now i am hearing another side of the story - and definitely experiencing it differently.

Hope you are well,

Hugs,

Laura

Eriksendi profile image
Eriksendi in reply to Lindaura

Hopefully your team can adjust the sickness meds and even the dose to make it much more tolerable. I know everyone says it it cumulative but my first dose during frontline was the worst. I tolerated the latter ones better. I had my taxol reduced to 75% due to neuropathy and it was much easier. Keep us all updated x x x

Lindaura profile image
Lindaura in reply to Eriksendi

Thanks for that.

Perhaps that’s all I need, just a little drop in the Taxol dose...

Hugs,

Laura

Shorty864 profile image
Shorty864

Dear Laura,

My heart goes out to you in fact I couldn't read your text without shedding tears - I was thinking the same thing a few days ago "becareful what you wish for" after reading a few things on people who are in trials. However, it takes guts to do these trials in the hope that finally we "may" find a drug which will finally offer some measure of success and this is what strong women like you do. I am hoping these wonderful nurses can come up with a few answers for you my dear and we are all here and if there is anyone who is entitled to whinge it is certainly you Laura.

Just to say I am into my second day on Caelyx and Avastin and am doing ok - i am trying to be hopeful - still waiting on an answer from COC and reading about HIPEC on trial here, but being used in the States.

A very big hug to you my dear - you are very much in my thoughts.

Anne XXX

Lindaura profile image
Lindaura in reply to Shorty864

Thank you, Anne,

Don’t be ashamed to let yourself get extra rest with the Caelyx.

But one thing I appreciated about it, was that my head remained clear throughout and I did not have any of that Chemo fog.

Still feeling exhausted today, but was able to wash my hair at least .

Phew!

Going to rest a lot more today...

Even though that is all I have been doing anyway...

Hugs,

Laura

Hi Laura

So sorry you are having such a hard time.

I had Taxol withdrawn after two rounds along with Avastin and continued Carbo only for rest of first line, second line and just started third line.

So many different reactions to these drugs by individuals.

Really hope that this is just another "blip" in this nightmare and that you soon pick up again.

Thinking of you.

Best wishes

Janet

Lindaura profile image
Lindaura in reply to

Hi Jan,

Thank you for your kind words. So sorry you too have to keep fighting the beast.

Did anyone ever confirm if your cancer was really cervical in origin?

Where are you located anyway?

This constant battling has become part of our lives - a big part, but that seems to be the way it is.

Be well,

Hugs,

Laura

in reply to Lindaura

Hi Laura

Thanks for reply. No they are convinced ovarian, Fallopian tube or peritoneum in origin.

Apparently now it's progressing as they thought with omental caking and thickening. Lymph nodes still growing although slowly.

CA125 down from 182 to 93.3 after first chemo although neutrophils also fallen to 1.6.

We are in the northeast and travel to James Cook hospital for Chemo.

Everything tried seems so hit and miss. If that doesn't work we'll try this!

Hope things pick up for all of us soon, and that magic answer is staring us in the face.

Good Luck with everything.

Janet

Gemimablackvelvet profile image
Gemimablackvelvet in reply to Lindaura

Dear, dear Laura,

how dreadfully disappointing for you. Happy to hear you're feeling a little better at the moment. Hopefully The Royal Marsden will find a remedy for your sickness and fatigue.

Looking forward to some better new from you very soon.

My love to you,

Angela xx

Lindaura profile image
Lindaura in reply to Gemimablackvelvet

Thank you, Angela,

Hoping to sort it out today.

I hope I don’t Have to wait a week to see if it is better next time, for several ladies have said that they were better after the second infusion.

But perhaps that is the case?

All very shocking to me and my naively thinking this would be a walk in the park while the toxic Chemo destroyed the cancer.

Chemo is toxic. I should have known.

Anyway, I will report what ever happens.

I don’t want to have to drop out...

Hugs,

Laura

Maxjor profile image
Maxjor

So sorry Laura---this sounds so hard--especially the mental aspect (and breathlessness is the worst!) but you say you are feeling better and I know you are systematic so perhaps you will start to know you good days, the day you perk up and stay that way (hopefully) and those wonderful nurses have other tricks up their sleeve. So glad you are keeping us posted as I am so hopeful for you and fingers and toes crossed you will be your old self before you have to do this again! oxoxoxxo

Lindaura profile image
Lindaura in reply to Maxjor

Thanks so much!

For some reason, you made me chuckle.

I don’r feel quite as tough as I planned I would today, but at least my hair is clean...

I am now going to try to work at my desk and get some business done or we will have no money in the bank on Monday!

I will try not to whinge too much until I have news from London.

Be well,

Hugs,

Laura

Neona profile image
Neona

My trial drug made me very sick to start with- retching and throwing up- pretty much took to my bed . However it improved as time went on . I was put on prednisolone when pneumonitis was suspected- all the retching and sicknesses stopped instantly- might be worth asking as steroids are always given with frontline chemo.

Lindaura profile image
Lindaura in reply to Neona

I Fear that the research is discouraging the use of steroids. I know they did not send me home with the usual collection of dexamethasone.

But maybe steroids would help, if they’re allowed... but they can be hard on one’s tummy, too...

Thanks, though,

Laura

Katiebairdie profile image
Katiebairdie

I’m sorry to hear that things didn’t go well for you. I think you were counting on this new drug being a game changer. Hopefully you will cope much better with the second infusion.

My thoughts are with you. 🤞🤞🤞

Lindaura profile image
Lindaura in reply to Katiebairdie

I guess, I wasn’t exactly planning on a game changer, I just thought my body would handle it better, just because I was so healthy at the start.

So I guess just the Taxol is pretty darn toxic.

I wonder what happens next...?

Hugs,

Laura

ellseybellsey profile image
ellseybellsey

Laura I am so sorry to hear you are having a rough time of it at the moment, I do hope your trial team can get your side effects under control.

We are all so different when it comes to side effects, I never thought I would have to come off the Niraparib due to toxicity.

All these new treatments coming out would not be available without people like yourself participating in the trials.

Sending you a virtual hugs. Ellsey xx

Lindaura profile image
Lindaura in reply to ellseybellsey

Thanks, Ella’s,

What a shame.

We were all so hopeful about the new PARPS, and now, Poof!

On to something else...

Hope they find something better for you, soon.

Gentle hugs,

Laura

Coldethyl profile image
Coldethyl

Hope these side effects pass quickly and that your team can ameliorate them for the next round x

Lindaura profile image
Lindaura in reply to Coldethyl

Thanks, Ethyl,

Now I am curious to see how they deal with this.

Kind of unexpected, as I was so well when I walked out of the Chemo Suite....

Hugs,

Laura

BP44 profile image
BP44

Hi Laura,

So sorry to hear that you are so unwell. Let's hope that you can find what works to stabilise things. I've been ok with the Taxol only this week, just the terrible bone pain from the tumour and the cough that I had before. The Taxol neuropathy is creeping back and I'm feeling sick every time I get a whiff of perfume and aftershave, but that's nothing!! Take care and safe travels on Tuesday.

Belinda x

Lindaura profile image
Lindaura in reply to BP44

Ibdon’t Have the bone pain, but I am pretty certain that would be due to the Taxol.

Glad you are not too bad. Keep on keeping me posted,

Hugs,

Laura

BP44 profile image
BP44 in reply to Lindaura

Unfortunately for me the bone pain is due to tumours on my spine. The Taxol hasn't made it worse, well not yet anyway!!

B x

Lindaura profile image
Lindaura in reply to BP44

Oh that’s awful!

I hope the Taxol can smite those clear cell tumours on your spine.

Be well,

Gentle hugs,

Laura

Tabor profile image
Tabor

Dearest Laura, so sorry to hear what you are going through. Praying the next will not be as bad for you. I have not done any trail drugs but have been through chemo 4 different times in my lifetime so far. Here are two things I done that really made a difference for me. I had the Neulasta shot the next day after treatment, this shot helped me a lot with side affects. Read up on it. Also I dranked buttermilk to help with upset tummy, please try this it works. You are a strong woman to be doing this trail. Praying the best for you.

God Bless You

Pat

Lindaura profile image
Lindaura

Thanks, Pat,

I’ll find out what’s available for me on Tuesday..., but I don’t think I can handle the buttermilk!

Hugs,

Laura

Shorty864 profile image
Shorty864 in reply to Lindaura

Kefir is also good for the stomach if you can't handle the butter milk - the one with the coconut in it even tastes good. Anne xxx

1916 profile image
1916

Hi Laura

Sorry to hear that, yes the treatment can be worse then the cancer. It might be your body getting use to the treatment. I hope you will have relief from these horrible symptoms very soon thinking of you .

Sending hugs

Annxx

Lindaura profile image
Lindaura in reply to 1916

Thanks, Anne,

I think I will be better today, last day before retreatment tomorow.

But, it’s also a learning curve for me.

Treatment is treatment and actually not a walk in the park.

Hugs,

Laura

Elfed profile image
Elfed

Hi Laura, how are you feeling now, have the side effects subsided?

Good luck on Tuesday, hope your train journey isn’t too uncomfortable

Best wishes

Kim

Lindaura profile image
Lindaura in reply to Elfed

Hi Kim,

I think I am stronger. My gums look pinker. I just hope I can manage the trip okay, but I am dragging a friend along to make certain.

Hugs,

Laura

jenny8c profile image
jenny8c

I've not been on the site for a couple of days so was sorry to hear that you are going through such a hard time. You are always so supportive of the rest of us that I hope you are getting strength from all the replies and good wishes you have received. I hope all goes well for you tomorrow. I know at the beginning of my 2nd line when I asked about a cumulative effect, the nurse said to me that often it was the worst at the beginning as your body was experiencing the drug for the first time. I do hope that is true for you and that you tolerate a 2nd dose better than the 1st.

You will be in my thoughts tomorrow. Lots of love and hugs Jenny xx

Lindaura profile image
Lindaura in reply to jenny8c

Thanks, Jenny,

You have warmed my heart.

I hope you are right, but tomorrow is close now.

I guess I was just taken by surprise, naively thinking that I was so healthy to start with and my last two experiences seemed so mild, that I thought I would sale right through without feeling sick at all.

So this Taxol/ TAK228 knock out was a shock.

I have actually ordered a wheelchair to get me through Paddington.

I was dancing through it last week!

Here’s hoping a lower dosage is the answer.

Hugs,

Laura

Shorty864 profile image
Shorty864

Laura did you hear/read about Ranitidine and the fact a US retailer has suspended sales of it in their pharmacies over fears it could be linked to an increased risk in cancer? The Independent was the newspaper. How are you doing my dear? Anne

Lindaura profile image
Lindaura in reply to Shorty864

Yes! What a drag! I am already having a terrible time keeping my tummy settled.

Now I am trying a sister medication called Cimetidine, which doesn’t work as well and supplementing with Milk of magnesia.

Currently on the train to London.

Caring friend here for me to lean on as my strength has evaporated.

And I am much better than yesterday!

Ugh!

Hugs,

Laura

Shorty864 profile image
Shorty864 in reply to Lindaura

You have been on my mind all day - so glad you have a friend with you. I imagine you are on your way home and hopefully the nurses have been able to point you in the right direction as far as Omeprazole is or rather isn't - however I agree it does work, but I believe it also destroys our flora - my nutritionist is not keen, but she is not on chemo - I can hear you saying, "but who cares if it works"!! Hope you understand my ramblings. Hugs to you my dear. Anne XXX

LittleSan profile image
LittleSan

Hi Laura, just catching up after 10 days away. How are you now? Hope things are on the up (ready for the next dose 🙄). We were actually in Bath for a day on our travels. What a beautiful city!

Good health to you. Hope the next dose is kinder. 💐😘

Lindaura profile image
Lindaura in reply to LittleSan

Thank you,

So glad you enjoyed my little city.

And glad you had a holiday!

I am on the train to London, well looked after by friends.

Ready to discuss a way forward.

I will post my conclusions tomorrow!

Hugs,

Laura

LittleSan profile image
LittleSan in reply to Lindaura

I'm sat drinking my cocktail waiting for CT. 🙄😘

juliamillen profile image
juliamillen

Hope wheelchair assistance went well at Paddington . It’s a big station

Good luck at the RM a great place

Mptelesca profile image
Mptelesca

Hi, Laura. So sorry...I just saw this. Hoping you are better today. I feel for you so much. It is disappointing when you're feeling so well and then fall to feeling the way you are.

As I always say...you are a strong and positive woman....you will find a way to have your body recover. Sending you much love. Feel better!

XOX

Marisa

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