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SCANXIETY!!

Member

Re: SCANXIETY!!

hi Scratch, sorry to hear about the progrsion. I found Eribulin very do-able ut unfortunately wasnt too successful for me. I have heard this is usually a really good chemo so hopefully it will be the ONE for you.....keeping eerything crossed.

Moijan.....also keeping everything crossed for you next wednesday.xx

Community Champion

Re: SCANXIETY!!

I had an MRI today. Results next Wednesday! I am hoping the Eribulin works...my tumour markers were down.

wouldnt it be great if everything has now gone away!!

 

will kerp you posted

 

Moijanxx

Community Champion

Re: SCANXIETY!!

hi Sharon replied to you on the other thread, but here it is again!

 

I have just finished my third cycle of Eribulin.
its given on day 1. Then Day 8 then a rest week


Cold caps and Eribulin.

my hospital does not use the cold cap for that chemo as there is no evidence it helps.. i was quite depressed when i began, as Dad had just died...so they did let me try..but it didnt work.

The other thing is the new method of cold caps, is run on a machine which keeps very, very, icy cold air circulating. It has to be on 1/2 an hour before the eribulin is given and remains on for around an hour afterwards...my hair was already thin and the cold was almost unbearable. The whole process took almost two hours from start to finish. After the first cycle, I opted to not have it as I was feeling better in myself. Nowadays, im in and out in about 20 minutes.

 

If you do opt to try the cold cap and they allow it....you need to take with you.

1/..baby spray hair conditioner, as they damp the hair down before putting on the tight cap.

2/ a head band to place round the edge of your head to protect the skin at the edges.

3/ wether you go for cold cap or not, be very kind to your hair, use baby shampoo and conditioner- or actually I use Simple shampoo and conditioner. Dont vigorously rub your scalp, just pat and smooth each product on gently and shower it off. I dont wash mine very often, i let it dry itself and dont brush it...I just gently comb it once a day.

 

three cycles down the line, my head itches, I run my hand through my hair and about 8 hairs come out each time. I have had it cut short. So as to lighten the weight of it.

Nb. When i first had chemo years ago, i made the mistake of vigorously massaging and my hsir vlumped in a large tangled mess and fell out.....very upsetting.

 

my experience of Eribulin.

 

i was started on a 60% dose, as my liver function results were very high.

 

Sore Mouth

My first cycle, i had a sore mouth for a while, i rinsed with bicarbonate of soda, about a teasp to a cup of water, and it really helped. The soreness went away. Dont swallow it, but you can gargle with it. Some people think rinsing your mouth after every meal is helpful. Use a soft toothbrush.

 

Anti-emetic prior to chemo

they give this as a matter of course, 30 mins before
i found that once on the drip i started panicking and feeling claustrophobic.
this last week, my staff nurse said she had noticed a few ladies getting panicky when they had the anti-emetic and asked if I would like to try it without. I did try it without and I was fine, no panicking at all. I also found I didnt need anti emetics afterwards.

 

Immunity

My white cells fell quite rapidly, Eribulin is well known to do this. I got very tired indeed on days 2 and 9!
I now have Filigrastin injections to keep my white and red cells up and as a result, have felt very well and less tired.

 

Constipation,

Even tho I drink 2 litres of water/diluted juice a day, it still makes me constipated. Recently got some movacol from the gp.havent tried it yet. Feel less hungry too.
Hopefully this 'essay' might be useful to you Sharon and Helen too. There is also a thread about general preparation for chemo

 

Member

Re: SCANXIETY!!

Hi I had progression in my liver ..so after just four months on examestane I will be going on to erubulin in about three weeks time..any info appreciated about side effects and hair.
Also do you have to have bloods the day before 1and8?...is it a hard chemo?....thanks Sharon.xx
Community Champion

Re: SCANXIETY!!

Hiya louboo
Welcome back and glad u had a good hol. I've always wanted to go to Sorrento and Corsica but have covered a lot of Europe so will enjoy my memories !!
Best of luck with the scan.
Xxx
Member

Re: SCANXIETY!!

Thanks, Louboo and Helen. Louboo - wishing you all the best for your scan - I will cross my fingers for you!

 

Hugs. Barton.x

Member

Re: SCANXIETY!!

Hey all

Just back from a 10 day break in Sorrento - was able to enjoy and put the 'c' to the back of my mind.

Back to reality with a bang!

Great to hear that you're a Stable Mable Barton, and sorry it wasn't better news for you Helen and Marie.

I've got my first scan since secondary diagnosis next week, so in for a rocky 2 or 3 weeks while that goes ahead and then waiting for results.

I love that you're feeling positive Helen and will endeavour to be so myself!!

xxx

Community Champion

Re: SCANXIETY!!

Marie and Helen, When do you start your New treatments? Wishing you the best as you get started. It's difficult starting a new one and trying to get organised with ammunition to counter act the SE. Most of the time I haven't been as worried about the progression  as I am SE. Hope your treatments are kind and effective. FF

Member

Re: SCANXIETY!!

Sorry... Thanks stress head...(blaming all mistakes on chemo brain :-)
Member

Re: SCANXIETY!!

Thanks Barton, got my head round it now and feeling positive - there have got to be lots more options for me still. Just wish they weren't chemo!

Hope anyone with scans coming up are coping xxxxx
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Member

Re: SCANXIETY!!

Barton...great news...so pleased for you.

 

Helen and marie...sorry to hear your news. Its such a shock when you find things are not going to plan. When i had pleural effusion i sort of guessed it would be bad but when my onc confirmed the fluid was malignant he also very casually said ...'and you have mets in your spine and pelvis'   as though it was nothing. Only good thing abot it was i didnt have chance to worry about it.

I hope your new treatments work well and you are soon both back on track.xx

Community Champion

Re: SCANXIETY!!

Hi Helen, sorry to hear your news. Come and sit next to me when we have our Eribulin.

 

so far, ive felt pretty well on it. Now having filigrastin to boost the little white cells..(. i think thats why im feeling so well.as it can knock out the cells pretty quickly.)

 

Apparently my tumour markers fell drastically after the first dose...but I am maulting everywhere!

 

anyway, best of luck on it and keep us posted

 

Moijanxx

Community Champion

Re: SCANXIETY!!

Helen, I'm sorry that your treatment has failed you! It is so disappointing for us! I'm glad you got a quick POA. I think that is important to our minds! Good luck at the races! Big hugs!! FF

Community Champion

Re: SCANXIETY!!

So sorry to hear your bad news Marie and Helen

 

I do hope your new treatment is going to be a winner for you Helen hope you had a winner today but here are some cyber (((((hugs)))))

 

Marie I do hope the new treatment works for you I will keep my fingers crossed for you and here are some cyber (((((hugs))))) for you

 

Love to you both xxx

Member

Re: SCANXIETY!!

Sorry to hear your news Helen and Marie. I hope your next treatments are succesful. Have a lovely day at the racing Helen. Hope you win something. Enjoy the Olympics on the big telly Marie. xxx
Member

Re: SCANXIETY!!

Sorry to hear your news Helen. Hope your next treatment is successful and today's distraction is fun.

 

Tournesol x

Member

Re: SCANXIETY!!

Sorry to hear about your disappointing results, Helen. We have all been there and know that changing treatment is part of the roller-coaster. Even though it's scary, it's much better to crack on with the next option. Fingers crossed for a winner at the races!! Lots of hugs xxx

Community Champion

Re: SCANXIETY!!

Hello Helen
Don't know quite what to say as everyone has already said it but I'm sending loads of hugs and like I said earlier ..we are a little family here and when one of us bleeds ..we all do..
Hugs xxx
Member

Re: SCANXIETY!!

Oh Helen, so sorry to read of your disappointing results! It's such a roller coaster, isn't it? I'm so sorry. I do hope your new treatment works for you for a long time with few se's. Try to enjoy the races today. Thinking of you.

 

Hugs. Barton.x

Member

Re: SCANXIETY!!

Marie sorry to hear you are in the same position. We can't be Stable Mabel's this time so will have to come up with a 'club' of our own and join them next time !