Laura and the DICE Trial - Week 2

[Lindaura]

Hello everyone,

Hope you all are as well as can be.

So: Yesterday was my early morning train ride to London. A good friend came with me and let me lean on her to get to the platform.

I was feeling a LOT better, much stronger, but definitely not my old energetic self from 7 days ago.

We made it to the Royal Marsden via Taxi, but still had to wait hours for the bloods to be taken, so I finally got the gist of what goes wrong mornings at the Marsden.

You have to get there well before 9:30 am with no train connection disasters, which means we have to leave Bath before 7:00 am. That’s a drag, but it’s the only way that works. There is still too much time to kill between being seen in the clinic and infusion time, but no way around it and makes for a long day.

So, my lovely friend came with me when I talked to my sweet research nurse Anna. She was there to keep me from glossing over the hard time I was having on the trial.

Nurse Anna was as shocked and disappointed as I was that I was so hard hit by the meds. It seems that everyone else is tolerating the drugs really well!

There was no real way to distinguish between Taxol and TAK228 side effects, but since I had suffered similar debilitating side effects during first line, we decided to blame the TAXOL.

Nurse Anna conferred with a trial doctor and they decided to reduce the Taxol Dose to 75%.

I was happy with that, albeit a little fearful that it won’t be as effective, but if they are happy, I am happy.

I am also going to take paracetamol regularly ( every 6 hours ) to keep joint aches and headache controlled.

Nurse Anna was very sweet as usual and assured me that they didn’t want to destroy my quality of life on the trial and we would just have to see how the coming week works out.

After clinic, my friend and I went to a little Italian Cafe across the street and had a wonderful lunch. My Jazz singer friend Joan joined us and one friend went back to Bath and Joan stayed with me for the infusion, entertaining the nursing staff while I passed out.

I don’t Know why, but the Taxol knocks me out.

When I was finished, I felt great again, as one does when filled with steroids, and we killed some more time in another restaurant and could walk back to the tube station to get ourselves safely on our trains, so I was back in Bath by 8:30.

Feeling pretty all right.

This morning I still feel all right, so I washed my hair and did NOT feel exhausted afterwards and am about to take CYCLE 2 of the TAK228.

Here’s hoping the drugs work to kill our cancers and I feel loads better for the rest of the week.

Thanks for listening,

Laura

[sticky3006]

Well done Laura! It sounds like an exhausting day but also a very productive one. Its so good to have lovely friends around us, it makes a huge difference. Hope today you can just relax and take it easy. Take care sticky3006 xx

[Lindaura in reply to sticky3006]

Thanks, Sticky,

I have always been an amazingly sociable loner. Busy with my own projects and biz and life in the entertainment world, etc.

I never kept my friends very close, but they seem to have rallied round me anyway, which has made me very grateful and now I urge everyone in a crisis to turn to their friends - and family.

Most reasonable people, friend and family, actually want to help, want to be of service, want to be part of our lives and do whatever will help to make us better.

It’s a joy and a welcome discovery.

Hugs,

Laura

[Beauxbelle]

I’m glad you are feeling brighter. Long may that feeling last

Love

Barbara xx

[Lindaura in reply to Beauxbelle]

Right!

Today is good so far. I am about 75% of me. If I maintain this tomorrow, that will be a victory.

Hugs,

Laura

[Spirit22]

Sounds like a very tiring day , you packed a lot in. Glad it went well , sounds like you had a lovely time with friends too Enjoy a nice relaxing time today ! Lesley X

[Lindaura in reply to Spirit22]

It is fun being in London and the Royal Marsden is in a great location.

It’s just a tiny hospital really. Spending all their resources in research, so you need to get out. If I had just a little more time and was feeling just a little bit better, all the most famous museums in Britain are right up the street!

Hugs,

Laura

[Solange]

Thinking of you and wishing you all the luck in the world. You're very brave.

Love and positive vibes, Solange 😊

[Lindaura in reply to Solange]

Thanks, Solange.

I shall put that luck to good use.

Hugs,

Laura

[Hidden]

Hi Laura

Really glad to hear that you are feeling stronger. Long may it continue (and improve).

Very best wishes

Janet

[Lindaura in reply to Hidden]

Thanks,

Knowing that the side effects do run their course makes everything a bit better.

I know now, even if it levels me again tomorrow, that I will be more myself by Monday - and I get rest Week at the end of each cycle...

Hugs,

Laura

[Mptelesca]

Laura, I am so relieved that you are feeling better. Your friends are angels and being surrounded by them always helps.

Love that you had two nice meals out and were able to wash your hair without feeling that same exhaustion. One step at a time and you will get there.

Please continue to feel better and stronger.

Keep us posted. I want to hear everything. Sending much love.

Xox

Marisa

[Lindaura in reply to Mptelesca]

Thanks, Marisa,

No appetite today, but made myself eat my usual rice crispies for breakfast and Halumi cheese on toast for lunch with rice pudding for dessert. Sticking to white foods mainly.

Friends have been a joy and a comfort.

As has this forum,

Hugs,

Laura

[Mptelesca in reply to Lindaura]

Well that sounds yummy to me. It's lunchtime here and you just made me hungry. lol. Fortunately, I bring a feed bag filled with food so I can graze while I work.

Will you have dinner or just a snack?

Yes, this forum is always a comfort especially when we don't want to burden friends and family with any gritty details.

XOX

Marisa

[delia2]

It sounds like a terribly long day but successful! I hope the dose reduction makes a big difference for you. Xo

[Lindaura in reply to delia2]

Really curious about how this week will be.

So so good, but much the same as this time last week .

The wreckage came on Thursday afternoon!

Yikes!

Hugs,

Laura

[Pendle99]

I have been thinking about you all week and didn't know whether to text you as sometimes when I am feeling rough then even replying to a text is too much. So pleased everything went ok in London and I admire you for getting through such a long day. Fingers crossed that the lower Taxol dose does the trick.

Right, I need to go and find my big girls pants ready for Thursday which seems to be my rubbish day of the week.

Sending you lots of love Laura,

Pen xxxx

[Lindaura in reply to Pendle99]

So Penny,

When do you have your infusion?

Mine is Tuesday, so it was Thursday that I started feeling awful. Lasted until Sunday night, so I wasn’t too bad on Monday, but weak as a dog when I started out on Tuesday.

I am hoping the lower dosage changes this, but I won’t Know until tomorrow.’

Can you tell me exactly how you feel? That may help me put this in perspective.

Hugs,

Laura

[Pendle99 in reply to Lindaura]

My infusion is Tuesday too. Wednesday I feel okay as I think I still have the affect of steroids in me. Thursdays I feel rotten - seriously lacking in energy, nauseous and basically want to hide under the duvet all day. Fridays I start feeling a bit better, Saturdays too when I actually fancy food and eat it. Sundays I feel totally normal again. Monday I start again on the steroids so feel magical - so much energy....and then it all starts again! Hope this helps xxx

[Lindaura in reply to Pendle99]

That helps. So it’s not too different from how I felt last week. Just kept very bad until Monday, so maybe this reduction in dosage will lower the fatigue and breathlessness and I will perk up earlier. Hope this regimen is killing all your cancer!

More hugs from me,

Laura

[Hidden]

So glad to hear you are feeling better, long may your health continue to improve x

[Lindaura in reply to Hidden]

Gosh I hope so,

Want to perk up and be 100%, but i’ll Accept 85%.

Hugs,

Laura

[Hidden]

So glad they have found a workable solution so that you can stay on the trial, Laura. Hoping the adjustment provides some relief from the nasty side effects and continues to fight back the beast. You are so open and generous in what and how you share your experience and in providing us with answers, advice and motivation and we appreciate you so very much. We are each, and collectively, rooting for your success. Though the process may not still be easy, we pray it will be worth it.

[Lindaura in reply to Hidden]

Thanks so much for your support.

I feel like a whoos, though, complaining so much.

It was just the shock of the unexpected.

Being so well going in to the trial and suddenly feeling like I was in first line again.

I think, even if it stays bad, I am now prepared for it.

And we get one free week each cycle, so I might find I can cram my

Work into that week!

Hugs,

Laura

[Jud15]

So glad things have gone better for you so far. Sounds like yesterday was such a long day for you, but good you were able to enjoy a couple of breaks outside of the Marsden

Jx

[Lindaura in reply to Jud15]

Yes, it’s a long day and i am very lucky to have friends there to try an entertain me.

And support me during this weird interlude.

Now I am waiting to see what Thursday will bring me...

Hugs,

Laura

[Doglover1410]

Yay, sounds good Laura, hope the well feeling continues.

I used to go to the Marsden once a year, and the highlight was always lunch with mum in that lovely Italian restaurant!

xx

[Lindaura in reply to Doglover1410]

Yes!

There are a lot of worse places to be stuck in than South Kensington.

And the staff at the Marsden are so sweet!

Hugs,

Laura

[Coldethyl]

Glad they have a plan for you - I had my taxol on frontline reduced for third infusion as I was unable to walk for several days after infusion - my oncologist said they tend to go in at top end of the dose and adjust so I wasn’t too concerned by the reduction - fingers crossed this week is better for you x

[Lindaura in reply to Coldethyl]

Oh thanks, Ethyl,

That’s interesting to learn. I win’t Worry too much about losing that 25% then.

Maybe this will do the trick, unless it is actually the TAK228...

Hope not.

Hugs,

Laura

[Seasun36-uk]

Hi Laura,

I love reading your updates! Maybe one day you will write a book?

What a long day! Great that TWO friends were able to support & accompany you! London is exciting....maybe when you are feeling better, you can take in one of the Museums!

We are all rooting for you,

Linda xoxo

[Lindaura in reply to Seasun36-uk]

Thanks, Linda,

I am totally encouraging all of us to call on our friends for support. They really want to be of use.

And the entire experience, though terrifying, is edifying for all of us.

Anyway, they make the experience more fun!

Hugs,

Laura

[gmc920]

Hi Laura, hope all goes smoothly for you the rest of the week. It’s great that your friends helped make the long day bearable (and as pleasant as possible!) Thinking of you and wishing you great success! xx Gina

[Lindaura in reply to gmc920]

Thanks, Gina,

I can’t wait for tomorrow! Thursday will be the test. If I stay afloat through to Friday, the lower dosage will have done the trick!

Meanwhile, yes! Thank goodness we have friends! And family support, too!

Hugs,

Laura

[Maus123]

Sounds like you and your team are working on finding the right drug balance for you, Laura. My Taxol dosage was reduced to 80% as well after #3 of last year's Carb/Tax/Av Treatment line, which made me feel loads better, and why should it not work just as well for us , that way?

Keeping my fingers and toes crossed for your success, and improved quality of life during treatment. xx. Maus

[Lindaura in reply to Maus123]

Thanks, Mays,

That is very reassuring. Hope I fly through this week and all meds behave, killing the cancer without killing me!

Hugs,

Laura

[claireRoberts76]

Aww long day laura... lots of rest now and cross fingers you will feel better soon.. lots of love to you xxxxxx 💗💗💗

[Lindaura in reply to claireRoberts76]

Thank you Claire,

So far so good, and tomorrow is the real test day.

So far, only my digestion is acting up, but I can handle that...I think!

Hugs,

Laura

[Lizz49]

Hi Laura

So glad to know you’re on the trial but sorry you’ve been feeling a bit rough, hopefully once the drugs have settled in your system your body will tolerate them and you’ll find the remaining cycles manageable.

Taxol is a tough one I know but you’re a strong and positive lady and your positivity will see you through to the finish line! Sounds like you made most of your day in London and lovely to have special friends with you along the way 💕

Keep smiling and hugs,

Liz Xx 💖

[Lindaura in reply to Lizz49]

Thanks, Liz, your message was very cheery and will see me happily through bed time.

Be well.

Lots of hugs,

Laura

[TarbonNZ]

Glad you are feeling better Laura, long may it continue. That Taxol is a beast, I had to have my dose reduced when I had it. My Oncologist says he is saving Taxol for further down the line again, as a big gun. Yay can’t wait! My tumour marker is now 177, and as of last week dreaded ascites is back. C T scan next week, then decide what treatment to proceed with. The bone pain I had on Taxol from day four for a couple of days each time was unbelievable. It is actually neuropathic pain, but it felt like my bones. Started in my shins, then as the treatments went on all over my body. Couldn’t stand to touch myself anywhere, so fully understand how you felt. My fingers are crossed for you with this trial. Much love Therese

[Lindaura in reply to TarbonNZ]

Oh dear,

Therese,

So sorry to hear the beast had roared back so brutally. Ascites is awful and now you definitely need to do something quick - and strong!

Can you get into clinical trials there?

There must be a cancer research hospital offering trials.. it would be good to investigate that.

They say that women in trials do better...

Otherwise, I think weekly Taxol will be your next offering and if you don’t plan on living normally, but let yourself give into treatment and know this is just what you have to do now, it won’t be so bad.

I was just foolish in thinking I would not be affected so much and would continue to be normal through this treatment.

Now my expectations have changed.

Please be well.

Hugs,

Laura

[TarbonNZ in reply to Lindaura]

Thanks Laura, unfortunately no trials available, we have already looked into it. Also, over here we do not have the drug availability that you do in the UK. Even Avastin needs to be privately funded. They have just approved Olaparib for ovarian cancer, however only for Brca, which I am not. If it comes to it we will look at self funding further down the track. I have not thrown in the towel, and still have a number of options in the standard treatment line. Take care, Therese.

[Lindaura in reply to TarbonNZ]

Interesting to hear.

Keep up the fight!

Hugs,

Laura

[ruthg55]

Wishing you all the best. What a long day for you, so happy to hear you had good company xx

[Lindaura in reply to ruthg55]

Thanks so much,

My friends have been amazing. I am stunned and grateful that so many have offered their time to me. And I am very grateful.

Hugs,

Laura

[ShropshireJo]

Do hope the reduction in the taxol dose is making a difference today. I found it hard to accept reduced doses in my current cisplatin/gem regime but my quality of life is so much better, it now seems worth it. All the very best. Jo 🌺🌼🌸🌻🌹

[Lindaura in reply to ShropshireJo]

Thanks Jo,

Your regimen was my other choice and I had always heard that it’s pretty rough.

How exactly was it and how are you doing now on a reduced dose?

Be well,

Laura

[ShropshireJo in reply to Lindaura]

I started on the reduced dose as I’d had a pretty bad experience with caelyx which I began in April, lasted three months without a normal day and three separate weeks in hospital. I was pretty week by the end of it and was referred to the palliative care team. Started cisplatin/gem sooner than I wanted and ended up with another eight days in hospital while they sorted out my bloods with transfusion and electrolytes. So dose reduced some more and have been managing it much better since then with a week after third cycle when I felt ok to drive, pop to Sainsbury’s, meet friends for lunch etc. Mu mid term scan which will be nearer a end of treatment scans is on 15th with oncologist meeting due 7th November just before cycle 6. Fingers crossed reduced dose is working. x

[ShropshireJo in reply to Lindaura]

Apologies for typos. Am getting rather lazy these days. I did a good deal of proof reading at work!

[Lindaura in reply to ShropshireJo]

Typos forgiven.

The story of your treatment is very interesting. Just showing how difficult this battle is, as we are each so different. We hope our Oncologists can do the best for us, but we can’t realise just how difficult their job is.

Hope your treatment works and you continue to enjoy your friends and family.

Hugs,

Laura

[Barmycharm]

Hi Laura

As always you are an inspiration with your positivity Despite a very long draining day you are not complaining but expressing gratitude for your friends help and company. Hoping the weeks ok for you and sending love and hugs with fingers crossed

Claire xx

[Lindaura in reply to Barmycharm]

Thank you Claire,

You have made me smile this morning.

And so far so good today.

Hugs,

Laura

[IrishMollyO]

I'm so pleased for you Laura that you have ploughed through all that rough stuff and have and come out the other end feeling normal. I know you say it's not your best self but you are getting there

Will keep you in my prayers.

I'm getting ready to go to Ovacare patient day in Dublin. I don't feel too hot and hurricane Lorenzo is heading across the Atlantic towards us. If the forecasters are right I will be ahead of it!

I wish you all the best Laura and especially that you will be able to stay on the trial without severe side effects. Take care

X X

💚💕

[Lindaura in reply to IrishMollyO]

Thanks Molly,

Hope Ovacome Day in Dublin is a smash and that you don’t get drenched!

So far so good for me this week.

I am beginning to brighten up and think I shall be able to keep in the trial.

Be well! Hugs,

Laura

[IrishMollyO in reply to Lindaura]

Dear Laura

Thank you for your lovely message. I have been reading your latest replies to other women and it's so good to read that your good feelings are still there. Your optimism is contagious and if we could bottle it we could all get rich. Long may it continue.

Hurricane Lorenzo stayed well behind me and I woke up to a calm morning with the leaves just gently fluttering. I was having a new bed delivered and looking forward to a comfortable night of unbroken sleep. The bed was duly delivered and I thought they had done everything too quickly until I discovered they hadn't assembled it. They would come back this evening to assemble it at extra charge ! Sparks flew out of my eyes and ears and then I pulled the out the cancer card which I use. It worked and I can look forward to my sleep tonight.

I'm now going to get a taxi to the shopping centre and beg a hairdresser to do something with my half inch spikey hair so that I will no longer resemble a retired Marine. I'm no Sinead O Connor but my wig is so uncomfortable now and has a life of its own. I need to look human for the Patient day tomorrow !

I will let people know how tomorrow goes. There's an interesting line up of guest speakers and I'm really looking forward to it.

Meanwhile Laura I hope you have a lovely weekend and that your good feelings continue.

X X

💚💕

[IrishMollyO in reply to Lindaura]

P. S. Laura

Sorry about the typos and I haven't learnt how to edit yet ! I rarely use the cancer card!

[Lindaura in reply to IrishMollyO]

Sometimes we actually deserve the extra care and support the “Cancer Card” affords us.

With all our secret sufferings, our fears and anxiety and the awkward humiliations we endure, associated with our various symptoms , we do deserve special treatment.

We really do.

Hugs,

Laura

[LittleSan]

You have a really engaging way of writing Laura. A great read. Here's hopi g you have a better time of it this week. 💐😘

[Lindaura in reply to LittleSan]

Thanks, Sandra,

Today is the big day, when it hit me last week, it was in the afternoon.

So far, I feel pretty good, just very sleepy.

Took my TAC228 at nine with no bad tummy problems.

Fingers crossed, that sleepiness is my only side effect!

Hugs,

Laura

[Maxjor]

Wow Laura--I have been on two trials and dose reduction--even with bad side effects one one of them--was never discussed, so all I can say is good for you and how great they could reduce dosage. That you are still feeling good is a good sign and I guess the coming days between cycles is where you need to see that you have that quality of life that is so important during treatment. Appreciate the updates and look forward to more. (I am at Memorial Sloan Kettering and they have this thing called "chemo express" which is if you give blood the day prior (and they are OK) they chemo will be ready within an hour of your arrival the next day. It works most of the time....but many are not as close as I am to make the trip twice in two days. I have had those 8 hour waits---one is too many but I had many so I empathize. Maybe once in a blue moon, go enjoy the city with a friend the night before so you are there way before 9:30AM the next day. oxoxox Judy

[Lindaura in reply to Maxjor]

Thanks, Judy.

I know what you mean. I live 5 minutes away from my excellent local hospital and I always drop over the day before infusion for the blood tests, so I am all ready to go on infusion day.

I thought about spending the night at a cousin’s home in North London, but decided that I would rather be home with my own little family.

Waiting around us bearable.

And there are a lot worse places to kill time in.

Hugs,

Laura

[Shorty864]

Dear Laura,

So glad to hear this - this is what gives the rest of us, as well as obviously yourself, the will to carry on. This forum is great. Loved your post.

I am sure it was the Taxol - on my first line course with Taxol, I thought I was not going to make it (spent a lot of time in hospital feeling thoroughly rotten) and got only 5 instead of 6 cycles and on my last encounter with it, in fact they gave me a reduced amount.

I am still struggling to have some feedback from COC and still waiting for my oncologist to refer me to the Royal Marsden and Susana Benergee in particular, but on the positive point I am feeling great and hope that this new regime is, if not cure for me, it will give me some fairly good quality time and dare I say it - a holiday - thinking of the Scilly's - not to far from my local hospital (by helicopter)!!!!

You have to let me know the name of the Italian restaurant you ate at with your lovely friends, just in case I get to go and see Ms Benergee; as I think I have mentioned I spent 40 years of my life in Italy and I have an Italian husband.

Here's a big hug to you and all the people on this forum. Anne XXX

[Lindaura in reply to Shorty864]

Thanks, Anne,

I am so much better this week and beginning to feel optimistic again.

That little restaurant is just a family owned cafe called Roma.

It is just across the street from the front door - main entrance, where we go for infusions (Medical Day Unit).

It is very unprepossessing, so I did not realise how pleasant it would be.

Not too far away, on Fulham Road, is Ricardo ‘s, rather a fancier restaurant that can be good, too.

Anyway, hope you do really well in your present regimen and get to visit the Royal Marsden soon!

Hugs,

Laura

[Shorty864 in reply to Lindaura]

Thanks a lot Laura - so happy for you.

It all seems to be taking time to organize, but the good thing is I am feeling well and getting on with life.

Hope you manage to get your work done during the weekend and that will be the icing on the cake.

Almost looking forward to going to the Royal Marsden!!!!

A big hug. Anne Xxx

[Gemimablackvelvet]

Laura you're amazing! How you found the energy and resilience to write and let us know so soon the answer to your problems after the exhausting ordeal in London, then to find even more to answer all the wonderful replies you received. Just where do you get all the inspiration from? I'm three days into my second infusion of carboplatin/caelyx and already feeling the strain. At the moment, nauseous, tiered, tingly and developed yet another UTI. However I'm not too bad and trying very hard to muster up enough energy to join my daughter, Penelope, tomorrow (October 4th) for her 40th birthday celebrations. I know from past experience the forth day is the beginning of 4 days of being housebound, no real appetite and worry. How you got through the last few days I'll never know.

All the very best to you Laura

My love to you

Angela xx

[Lindaura in reply to Gemimablackvelvet]

Oh Angels!

That is so familiar! The first week after Carbon/Caelyx was always a write/off.

But getting my Taxol dose reduced seems to be working!

It’s Friday morning, and I am not sick! Not achy, not head-achy, just a little weird and not wanting to go dancing - or even shopping, but so different than last week.

I also have full blown diarrhoea, which I didn't’ have last week and which is not going away, even with 4 caps per day of loperamide

Anyway, I am loads better otherwise and plan to get more biz work completed today, which will relieve me of anxiety!

Hugs,

Laura ....

[Shorty864 in reply to Lindaura]

Dear Laura,

Did you ever try Psyllium Husks Fibre 500mg for diarrhoea - works for me. Nutritionist told me about it? Anne XXX

[Lindaura in reply to Shorty864]

I always though Psyllium husks were for constipation!

I don’t think my belly is ready for them just now though...

Thanks,

Laura

[Shorty864 in reply to Lindaura]

Actually Psyllium can used for both. Maybe others have tried it on here? Take care my dear, off to do another CT scan - not sure why - seems a bit early for any changes. Always a bit of an anxious moment. Take care. Anne XXX

[Elfed]

How did yesterday go, hopefully better than last week, let’s hope the lowering of taxol has made a difference 👍👍

[Lindaura in reply to Elfed]

By George,

I think it’s working! Yesterday went by with only a strange sleepiness permeating my day.

I wasn’t nauseous or achy or breathless.

Today I feel okay. Just a bit weird in the head and with this new diarrhoea that won’t go away.

Haven’t taken today’s dose of TAK228 yet, so wonder if that will bring on the sleepiness....

Been sticking to a bland white rice diet, so my tummy was better, too.

Rice crispies for breakfast AND lunch. Oven fries and rice pudding for dinner.

I am thinking about trying a veggie burger for lunch today!

Very daring!

I am also looking forward to our famous week off.

Next Tuesday I go back to the Marsden, but then I have the next week off.

I think I will learn to use the free week wisely and I won’t have to worry about missing my work. I’ll just catch up in that last week!

So, if this will just destroy the cancer, all will be well!

Hugs,

Laura .