Good luck Janie
Am booked for day 1 later today!
Let me know your future plans
Mx
Still on Eribulin for the time being but it’s not working that well. Next option is Letrozole . Anyone know how does that compare to Eribulin with side effects . I’m assuming it won’t be so many trips to Onc - I might be able to go abroad more easily ! Hope you are all doing ok ?
Hello janieb
Just reading your post …letrozole is a hormone pills taken daily …it will be an absolute doddle compared to chemo you have been having.
You can do everything …abseiling, swimming , holidays etc …
Hugs xxx
That’s good news , something to look forward to if it works . I have continued to do most of those activities anyway so it looks like I’ll have to take up abseiling!
Xx?
Janieb
Enjoy your absailing then !! Ha ha …the only thing to be a little bit careful with is hair thinning …avoid harsh hair colouring/ hair straightners if u notice the hairbrush looking a bit clogged up !!
Under going through treatment …hormone therapy …you will see oodles of threads on letrozole which might help …but most ladies don’t have much problem especially the ones that have done the big guns chemo first !!!
Xxx
Hi Kay, thank you yes.
The neuropathy concerns me too - not sure about wether will stay on Eribulin but will depend on my MRI results - having it next week.
Best wishes
Mx
Thank you Bon
Mx
Hi Nicky
Really pleased the treatment has worked. It must be such a relief.
Have a good weekend
Linda
Hi, I was on xeloda for two and a half years, did suffer bad with my feet and hands. Changed to Eribulin in June, have been wearing cold cap have kept my hair has thinned but only slightly but am lucky that I have thick hair to start. Am on my 6 cycle, had scan and all stable, tumour marker has dropped down to 100. Was wondering how long I would be on this drug would love to hear from anyone. Thank you Kim
Hi Kimmi
I was on Eribulin for 15 months although I don’t think it was working fully for the last three months . I’ve just started Xeloda/cape so I’m glad to hear there’s a posibility of it lasting for so long!
Great to have been part of the thread but I guess I’ll ‘meet’ some of you on other threads .
Good luck to everyone and keep going!
Big Hugs ? ?
Janie xx
Hi, my go would be concerned about a continuous reading of diastolic of 90 upwards, but maybe it would be good to get your own machine? I do mine sporadically and it varies a lot. At the hospital it’s usually 75 or under, but not always. It also depends a little on age as to how they view it.
and to say, ‘we don’t treat it if’ isn’t helpful, as if it is higher than ideal…they should have a chat and look at your general health…why don’t you go and see the practice nurse?
Moijan???
Kay, have sent you a pm xx
I fear not Kay. It was the thought I’d had too, but they don’t seem to be allowing us to have it once we’ve had chemo.
The ‘Nice’ website now has all the decisions making process on there…makes me feel quite cross.
Withasmile, how are you these days? And the lovely horse from your avatar?
who else has been away?Nicky, how are things with you?
Moijanxxx
Hello KAY
I have noticed the forum itself has been quite quiet. For Marnster…have a look at her blog’ life is too short to miss desert’
hope all is well with you…and that eribulin is working it’s magic for you xx
Helen, good luck for tomorrow xx
Kay, just a quick comment…I used to have a very large gall stone and had really bad pain in the liver when I ate too much fat, and the pain was pretty unbearable…was rolling around on the floor.
…had my gallbladder out ages ago now, but I recall being ultrasounded after getting symptoms and wash told that actually, apparently constipation can cause what feels like a pain in the liver, ( as we know the large bowel runs across in front of it)…I have mets in my ribs too which tend to feel like a burning pain and cramp when they occur, I also get what feels like a mild pain in my liver when I have a lot of wind but with a gurgle it disappears… Just sharing in the hope that it helps?
Moijanxx
Hi everyone,
I haven’t posted much on here but do check in from time to time to see how everyone is getting on.
I am starting cycle 7 now of eribulin and have been tolerating it well with few s/e, mainly tiredness and aching joints, thankfully recent scans show it is keeping the pesky tumours at bay. Was speaking to one of the chemo nurses who said they have had a lady that has been on eribulin for 39 cycles which is very reassuring.
I have been off work since February and need to decide whether to return in the new year and would like to know who is working and how you are finding it.
Moijan - I have been following Marnie’s blog, such an inspirational lady x
Hugs Teresa xx
Actually, ladies, I have been waking up with left sided, under the ribs pain, which on waking makes it hard to move around. But does improve during the day, but I am puzzled. Googling comes up with loads of stuff, spleen, constipation, reflux and on and on.
must admit…initially I thought of spleen because of where it is…but seems lots of people have had it after a course of antibiotics! So am keeping an open mind for the present and hoping it will go away! Just thought I’d share this as lots of newer bc travellers often say how we seem calm etc… but we too, go though times when we don’t know what is happening.
I’ll also comment that gp’s are inaccessible except In emergency and
i don’t think it’s an a&e scenario (yet ) on the symptoms…I’m certain it isn’t bc either - antibiotics are in themselves anti inflammatory…but can irritate the bowel and I suspect can encourage muscles and tendons to be a bit slack whist we take them…and of course gut bacteria gets a beating…so I’m going to drink loads of water and take Kefir with probiotics added at a different time to my antibiotic -
I am no longer on chemo, so I’m currently safe to take probiotics without checking it out with the onc!
will feedback how I get on xx
hope you are all happily chugging along xx
Moijan?
So pleased that you are doing well Withasmile.
I started cycle 14 last week as the eribulin is keeping me stable in liver & bones. The 2.7cm tumour is still 2.7cm in liver but at least it hasn’t grown or any new mets appeared- for that I am grateful. The neuropathy in fingers and toes has eased off a bit as well so happy (!!!) days…
Take care Spongebobbers, love Helen x
Just reading online that NICE have rejected use of this drug to ladies that haven’t already had two failed chemo treatments …so it’s going to limit new ladies becoming sponge bobs here !!
Apparently they can’t justify the high cost against standard cape pills which are cheaper. …
Xx