Thank you all again from Laura Update on DICE Trial

[Lindaura]

Thanks to you all for your encouragement and the new reminder to all of us to NOT suffer in silence, but to let our CNS or our Chemo team know if we are not managing under our side effects.

Today I am including a photo of my temporary image, as my lovely blonde locks are deserting me rapidly.

This is delighting my daughter as it serves to demonstrate that even though I did not have my third Taxol infusion, it is obviously still working it’s magic.

I do feel a lot stronger and a lot hungrier! Went to my local hospital for bloods and walked all around, unaided!

QUESTION: as my hair falls out, the back of my skull feels sore. I feel as if my scalp was bruised. As if someone hit me with an iron while I was sleeping.

Otherwise, I feel pretty good.

Anyone else experience this?

Hugs to everyone,

Laura

PS: I AM going to go for the cold cap next time!

[Hidden]

Looking fabulous! glad to hear you are feeling better. x

[Lindaura in reply to Hidden]

Thanks Lyn,

Pixie cut will last a few more days I think..,

Hugs,

Laura

[Hidden in reply to Lindaura]

I found wigs too uncomfortable to wear all day so kept them for going out in the evening, during the day at home I wore a selection of scarves, annabandana.co.uk/ were very reasonable, I also re-discovered baker boy hats which I love, blast from my past!! xx

[Vicx1977]

Aww you look lovely Laura, you have such a positive outlook on life. You are giving so many of us lots of hope. Lots of love, vickie x

[Lindaura in reply to Vicx1977]

Thanks, Viv,

Such a strange trip we are in. Our journeys are all different and the same, diverse, yet similar, but we never can be certain about what awaits us.

Not an exact science for our doctors either..

Hugs,

Laura

[Beauxbelle]

Dear Laura,

Having been with Vicki on most of her treatments I wouldn’t do the cold cap. In most cases that I have seen, most people lose their hair anyway and the cold cap is both uncomfortable and painful. That is just what I have seen and spoken to various people about.

But it is your choice when all said and done. This is just my opinion on what I have seen and heard.

Love and hugs to you on your on going journey through this awful disease.

Barbara (Yoshbosh’s Mum)

[Lindaura in reply to Beauxbelle]

Thanks for that. I shall keep it under my hat. It was just more heartbreaking than I thought it would be to see it go. And the mess!

Hugs,

Laura

[Gemimablackvelvet]

So happy to see your smiling face. I was just beginning to worry why we hadn't heard from you. Looking surprisingly good after your gruelling ordeal. Who needs hair! Easy for me to say as I haven't lost mine yet. Its thinning a little but I bought wig this week in readiness. Had a tough week with carbo/caelyx but good advice from my chemo team re anti sickness tablets and laxatives worked. I was told to triple both and it worked within a day. Needless to say I didn't move far from the bathroom.

All the best for your next infusion.

My love to you,

Angela xx

[Lindaura in reply to Gemimablackvelvet]

Oh yes, that’s how I found out about emend!

I did keep my hair on Caelyx.

Probably why i am so bummed to lose it now.

Two years of lovely blonde hair, literally down the drain!

Hugs,

Laura

[Manchesterlady]

Lovely to see you . You look fantastic. You are a very inspirational lady . So pleased that your feeling better and stronger xxx

[Lindaura in reply to Manchesterlady]

Thanks, Sheila,

And I am so hungry now!

Amazing!

Hugs,

Laura

[delia2]

Great picture! Glad your spirits are up. You look gorgeous! Take care!💕

[delia2]

Also, it is normal for your scalp to hurt when your hair is coming out. Unfortunately mine hurt all through frontline. PS are those records behind you in the picture?

[Lindaura in reply to delia2]

Thanks, Delia,

Yes, those are records. My husband and I were crazy rock musicians back in the day and those were all the records we listened to.

We don’t even have a record player anymore.

I am living in my husband’s music studio now because it is close to the downstairs loo.

Been here for two years.

Hugs,

Laura

[27-359]

Yes, I had the sore head when on Carbo. It felt like it was at the hair roots. Once all the hair was out, it stopped hurting.

[Lindaura in reply to 27-359]

Thanks so much. That’s a relief.

It didn’t happen to me in first line.

It’s pretty painful if I want to comb out my remaining hair.

Hugs,

Laura

[Spirit22]

Glad you are feeling stronger! Lovely picture you are looking fab Xx

[Lindaura in reply to Spirit22]

Thanks so much. Feeling better, too.

Hugs,

Laura

[LittleSan]

So glad you're feeling stronger. It's so gutting losing your hair isn't it? Not to mention the discomfort you're now feeling - the prickly itch of it letting go. I found the loss of my eyelashes awful too. I'm a big mascara fan and even my eyeliner was washing off without the stability of eyelashes. I found a great waterproof eyeliner though and created an illusion of lashes by putting dark eyeshadow just in the far corner of my eyelid. I can't tell you how pleased I am that I can put mascara on the stubby lashes that are now growing back - I'm looking more like me! Shallow as it sounds in this complex and often traumatic world of OC, its so important to recognise myself when I look in the mirror!

Keep reminding yourself that it's just temporary and you will get your gorgeous blonde locks back. Keep on keeping on. Love and strength to you.

Sandra 💐😘

[Lindaura in reply to LittleSan]

Thanks, Sandra,

Yes, just when I began to get comfortable with the new me!

I guess I was foolishly hoping that weekly Taxol would not be the same, but hey?

It is!

Toxic taxol.

Hugs,

Laura

[Jud15]

So good to see you looking so good and feeling much much better. I had real pain in my roots with my hair loss from taxol but as someone else has said once it had gone so had the pain. But I've always had a sensitive scalp so may have been me.

Jx

[Lindaura in reply to Jud15]

I guess it wasn’t just you. My head must have been a lot harder last time.

Good to know that no ones been beating me in the head in the middle of the night!

Hugs,

Laura

[ellseybellsey]

Laura you do look lovely and I am happy to hear you are feeling stronger and better still you are feeling hungry. I had a very sore head when my hair fell out on both chemo lines, I used rub alovera into my scalp and that did help.

Ellsey xx

[Lindaura in reply to ellseybellsey]

Thanks for the tip,

I will try that!

Hugs,

Laura

[Eriksendi]

My scalp also hurt when my hair came out with taxol. I rubbed organic coconut oil on my scalp and that kept it nice - no problems! Glad to hear you are feeling a bit better. Sending hugs x

[Lindaura in reply to Eriksendi]

Thanks for that.

Good to know my scalp is normal!

Hugs,

Laura

[Neona]

Lovely photo! I used the coldcap and thought it was well worth the effort. Only hurt for a couple of minutes and was reasonably comfortable after that. Kept about half my hair and looked pretty normal except very thin on crown where the cap didn’t fit properly.

[Lindaura in reply to Neona]

Thanks for that.

I guess my jury is still out on the cold cap.

I can’t really cope with the shedding either...

Did it still fall out in handfuls?

Hugs,

Laura

[Alifit]

Hi Laura

I’m so pleased that you are in a better place than you were. I’ve just finished 18 weekly taxol and have still got hair. It stopped coming out at around 10 weeks but is now falling out more quickly. My head does hurt - I guess it’s because the follicles are somehow damaged by the chemo. I decided against the cold cap partly due to the discomfort, but mostly due to the extra time which would be added to my already tedious time having the taxol and associated meds to prevent an allergic reaction!

Good luck with your continuing treatment, Ali x

[Lindaura in reply to Alifit]

Yup!

That is the extra problem. We are already devoting so much time to treatment, and so much of our treatment makes us feel awful, it’s hard to choose something that adds to our discomfort.

Still, I might change my mind..,

Hugs,

Laura

[Solange]

Hi Laura. I definitely had the same sort of feeling on my head when I lost my hair on Chemo. I also had a very tender scalp at a certain time on each cycle. Never heard from anyone else feeling the same, though, so it's good to know I'm not alone experiencing a tender bruised feeling. Fingers crossed your treatment will do it's job. I do admire the new look on your photo.

Love from Solange. 😊Xx

[Lindaura in reply to Solange]

Hi Solange,

My hair is falling even more rapidly today, and my sore head is healing now, and feeling less bruised.

I am trying to decide if I should wear a wig to my next appointment.

I hate to appear enfeebled, even when I am, and the hairlessness kind of adds to that.

Well, I still have two days to decide...

Hugs,

Laura

[Solange in reply to Lindaura]

You've reminded me of when I was on Chemo a couple of years back and I had to go to have an op on my paralysed vocal cord. (Second attempt and both failed - permanently hard to speak loud enough to be heard) The day before I had to go to hospital my hair, which was unlayered and nearly down to my shoulders at the back and a bit shorter, flicked back at the sides, started to come out in earnest. (I'd been too cowardly to have it shaved off) So when I went to hospital the next day it was pretty messy. When I got into theatre I had to warn the staff not to worry if the cap they put on me fell off, or if they took it off, and it was full of my hair, not to worry. We had a laugh and then sympathy, about it but it made me decide it was time to cut it all off when back at home! I do feel for you.

Hope all goes well for you. Love, Solange 😊

[sticky3006]

Hello Laura. Thank you for your update and I’m so pleased you’re feeling a bit brighter and well in yourself. Take care and keep us updated 😃. Sticky 3006 xx

[Lindaura in reply to sticky3006]

Thanks, Sticky,

Being off infusion is kind of wonderful, but it is probably giving me a false sense of better health.

I get a scan in one month, so that will help.

But right now, I wait Til Monday to see if I return to London on Tuesday.

Hugs,

Laura

[sticky3006 in reply to Lindaura]

Good luck. Will be thinking of you x

[Harrygirl]

Hi Laura,

So glad to see you looking well in spite of your ordeals; also glad to hear you have an appetite-I always felt things were more bearable when I fancied eating, don't ask why!

As far as the scalp, mine was sore throughout first line Taxol/Carboplatin, although it was less tender when my hair was totally out. I did make sure I washed it with a very gentle body wash from Shea Moisture with 3-6-9 omegas and moisturized it with almond oil after every shower. Keeping my scalp in good condition helped it not feel so sensitive. Some people recommended Vit E oil too; either way, good scalp care helps decrease soreness if not making it totally resolve.

I wish you continued good spirits and stamina! You are one gutsy lady!

Big hugs,

Christine xx

[Lindaura in reply to Harrygirl]

Thanks, Christine,

Today even more hair has fled and I have taken out a blonde wig that my husband loves, but my daughter loathes.

I have also quickly ordered a couple from eBay, which may get here tomorrow, but probably won’t. The current wig I am wearing makes me look like a country singer, so I don’t mind it.

Kind of: “Your Good Girl’s Gonna Go Bad” style...

Hugs,

Laura

[Katiebairdie]

Hi Laura

Glad your feeling so much better. I had 8 rounds of taxol with the cold cap and kept most of my hair, just a bit thin on the crown but I became very adept at comb overs. Had almost 3 months break and now back for the next 8. I’ve had the first 2, again with the cold cap.

It is painful for about five minutes and then it settles down. I take the opportunity to read a book and play on my iPad without feeling guilty.

Good luck this week whatever you decide.

[Lindaura in reply to Katiebairdie]

Thanks for that.

Fortunately, I now have about a year before I have to deal with hair loss again.? And 6 months of baldness facing me now.

Ouch!

Hugs,

Laura

[jools53]

Amazing lady ! Looking good girl 😘😘😘

[Gemimablackvelvet]

Wonder Woman xx