That's excellent news, Stillhere! You have done well! Long may it continue. Thanks for letting us all know - it's so cheering when someone posts with good news for a change!
Hugs and best wishes. Barton.x
Still here,fantastic news.can only echo what Carolyn has said. Enjoy your worry/stress free time and long may the results continue.xx
So so happy! My lovely team have just phoned me with news that my CT scan showed a further reduction so now 30% in total after 4 months on PIPA trial! Hubby doesn't need to come with me on Thursday now and I don't need to stress for hours either, thank you doctors for your call!
Grateful thanks for all your positive thoughts and I'm sending mine on to everyone waiting for results. Lying on my swing bench in the garden watching bees on the lavender, feeling blessed xxx
Thank you! It really helps to know we all go through this together. I'm trying to focus on the bank holiday, have fun everyone! xxoxx
Thank you, all of you for sharing my joy about the scan results! Such lovely ladies, one and all.xxx
good luck, Stillhere....do let us knowxx
So pleased for you Moijan, that's a fantastic result! Hope you are celebrating. Had my CT scan today, result on Thursday 😳 😳
Just wanted to report on here that my scan results were good and my tms have fallen more than 60% on Eribulin.......going on the 'hunt a vein' trail again today. And will fillup my tank with Zometa also, so the Eribulin and Zometa will be chasing each other around like nanites!
Have a lovely day all of you
Hi Sharon, yes do try the cold cap, it may work well for you I stopped because of the panic, which i now know was due to the antiemetic, so it may well have helped me kerp my hair if id persisted
Hi Sharon, sorry to hear you have progression, fingers crossed the new chemo blasts the little uggers!
Stay strong hugs Janette xxxx
Thanks Moijan - that's great info you have shared with us :-)))
doesn't sound tooooo bad! Wondering whether to keep on with the cold cap as sounds like a waste of time... Darn, was hoping to keep it after doing so well with it on pacitaxel
Fingers crossed for you whilts in the land of scanxiety.
Good luck with your scan results Moijan. Hope your Eribulin is working I will keep my fingers crossed for you and send you cyber ((((hugs)))) xxx
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
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
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.
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.
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.
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
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!!
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
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
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
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
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
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
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.