Oh Glo how frustrating for you! I hope they get you fixed up soon. I had another scan after cycle six which showed reasonable response (I got the impression they were hoping it would be more as they were very pleased with the last one) only one liver met seems to be going against the trend. They are hoping it !might have been scan angle but onc is going to see if I can have RFA and continue with this chemo as all the rest are towing the line.
I hope everyone else is managing well and seeing good results xxx
Hi Glo, any news on your MRI yet? Hope the Eribulin is going ok for you. I have just had cycle 6 part 2 and I am now going to take a break, I had Eribulin last year 7 cycles, and it worked for my liver Mets and lymphs. I am hoping for a good response this time round and have a scan next Friday to see whats what. I have got a numb forehead which the onc thinks might be my trimgimenal nerve. He will include the head in the CT scan next week. Was that how they picked up your mets? I am so scared it has progressed further. I hate the MRI as I am claustrophobic so dreading it if I have to have that.
Have found the chemo doable but I am tired now, not least of the whole routine of it, and my bloods have been badly affected (Hb) in particular, just think I am generally run down. Still having a transfusion next week which will hopefully give me a boost.
Good luck to all Eribulin ladies and hope the side effects are not too bad.
Hi eribulin ladies have just joined this link do hope this works and get some reponse. I have secondary breast cancer mets in bones and liver. Had docitaxol last summer responded well then on letrozole no luck and then capacitabine tablets made me feel awful and unfortunately didn't work. Am now on Eribulim 5 cycle and is working well oncologist really pleased tumour markers dropped from 739 to 119 since 28 December long may it last. It's very tolerable which is a bonus just severe fatigue. Would love to hear from anyone out there and their experiences. X
Morning ladies, I'm on my 10th cycle of Erubulin, So far it's held my liver mets, lung met and lymph (breast) in check. Weekly Taxol was no good for me, after 6 months I developed liver mets, so went onto a tablet form of chemo called Capectitabine, bloody awful stuff for me, my feet ended up planta stage 4 and was unable to walk at all. .
Thought I'd share some good news for a change. I had my scan results after my first three cycles of eribulin and my liver Mets have all shrunk by 30-40%! I think they were quite hefty to start with but I've had a long stretch of treatments not working. I really hope its doing the same for all of you xxx
Just thinking of you and wondering how you are getting on with the Eribulin. I wasn't able to get on the FINESSE trial at the Marsden, because my liver scores were out of range. They sent me a follow up letter saying that the ALT was 170 and the AST was 112 with a bilirubin of 30. Still not entirely sure what those mean, but they must be pretty poor! I've been off treatment since 3/12, so I'm not surprised.
Start weekly Taxol tomorrow... 18 wks if I can persist. Just hope that I finally see some proper results.
Hope your son is enjoying the extra holiday sleeping time... my Marcella is certainly making the most of it! After New Year it will be hectic revision.
Hi all, I will be joining you liver mets ladies on Eribulin next week. I had 7 cycles earlier this year, finishing in June when I took a break as the results were very good. Having discussed other options, doxorubicin and Vinoralbine, my Onc thinks it worth giving the Eribulin another shot. Not looking forward to it. It did knock my blood counts for six and I felt very tired and lost my hair, but I guess it might be better the devil you know.
will let you know how it goes. Hope you are all as well as can be.
Hi all can anyone tell me if new breast lumps are cancerous would they show up on my routine chest abdo ct scan? Thanks hope everyone doing ok love sarn123 xx
Hi all, Jo I feel light headed, spaced out on this chemo. Before chemo my mobility was ok, I used one crutch outside the house but didn't need it inside. But since chemo and especially after steroids wear off I'm hobbling on two crutches. I hope you will find all these side effects will all be worthwhile.
Hi Sarn, hope the CT goes well next week and you can get the results quickly so no stressful waiting. Not needed. All crossed all will be well for you.
Hi Ellie, hope you are going to breeze through this chemo, it seems to either to hit hard or it's very doable. Hope the throat is better too, a little add on that's not needed at this time.
Best Wishes All. X
how are all you eribulliners doing ?? Just reading through some of the posts has been really helpful for me recently. I'm struggling with the fatigue and joint pain. Feel like a 99 year old! Can't get up out of a chair without moaning and groaning! But reading through I see a few of us struggling with the same thing. Has anyone had any light headedness ( is that even a word?). I've just mentioned to the doc on the ward where I have my treatment and now she's talking about doing a brain scan! What!!
Hope all are well!
Hi Belinda thanks for getting back to me on new lumps, I've got ct next Tuesday so we ll just wait and see. I have now had 5 cycles of eribulin and only missed one day 8 due to a cold which was my choice as I'm having the cold cap and didn't fancy freezing my head with a cold😱😱😱, my first scan after 3 cycles were positive so fingers crossed for you. I have found this treatment very doable up to this last cycle although my bloods are all good I've been feeling wiped out, really tired sleeping loads and normal jobs are an effort. Good luck for your results love sarn123 xxxx
Fingers crossed its doing more than you think. I started on Wednesday. Feeling a bit wiped out but think I have tonsillitis so I'm sure that's not helping! Not watching I'm a celebrity but I have got sucked into strictly again this year! No idea who might win it this time though!
How are you all fellow Eribuliners? I missed chemo last week as low whites but had the end of cycle 2 this Thursday. Not sure it's doing much, my (visible) primary is unchanged, but we shall see, one more cycle before I get to know whether I can continue with it. On the plus side I was getting more bone pain before starting this one and that has stopped so who knows. Some get fabulous results from this chemo, I hope all those on it, or about to start it, (have you a start date yet Ellie?) have a roaring success with it.
Is anyone watching I'm a celebrity, get me out of here? I love a diversion and this has come along with perfect timing. All the Christmas books I was going to read in the run up to Christmas are going unread. Oh but I have found all our Mog books again after seeing the Sainsbury's ad. I think it's better than the John Lewis ad this year.
Enough of my chatter, stay warm, take care all. XXXX
Thanks Belinda. I seem to be following you from treatment to treatment! I do worry about my bloods with this one as they were dreadful with Gemcarbo. I only had about every other day 8 treatment as my results were always really poor. I also had such bad sickness that my onc had to keep reducing the dose so its no wonder it didn't work that well for me! I'm just worried I'll end up with the same issues but I felt I should go for this one as who knows how long it will stay funded!
Hoping to get a start date soon.
Hi Ellie, sorry to hear you have to switch chemo. I have found this tough but for many others, reading their experiences the main issue has been tiredness so I hope you are light on side effects. My main issues have been digestive, heart burn, very painful, painful joints and muscle weakness, especially after steroids are stopped. It can bash the bloods, I couldn't have chemo today as whites are too low. The bloods, red and white are amongst the most common side effects. If it's working I will be happy of course, I am having three cycles and then I see my Onc to find out. Missed the second part of cycle 2 today so hope bloods have recovered by next week. Good Luck Ellie. X
Glad to hear people are doing OK on this chemo. I've just found out my current one isn't working (again!) so should be starting on eribulin soon.
I'm only in the second week of my new job so a bit worried about what the side effects may be and whether I'll be able to carry on. I was on Gemcarbo and found this quite manageable. I was on Taxol and avastin before that and EC prior to that one! Any advice on side effects or how they compare to any of the others would be much appreciated.
yes but it's the private patients day unit. I guess some people may not want to know their blood results or tumour markers. It's a double edged sword. It lifts you when they are good and terrifies you when they are bad! It's a personal thing.
Best wishes to all
do you mean the day unit? yes thanks for he info on gamma readings i'll get my blood results and get the nurse to explain them all. though i think it may all be a bit depressing as i haven't had chemo for some time.
im not there on thurs. I'm not there until 17/11. Do you go to the PPDU? Hope your treatment goes well today?
Firstly do you get print outs of your blood results? I get mine every time I get a blood test done so I can see the changes. If you have liver mets they will do a liver function test. You should be looking at alkaline trans, gamma gt and bilirubin. My gamma (which is inflammation of the liver) has been as low as 22 and as high as 1477. After two cycles of eribulin it is down to 330. My alkaline is 30 and bilirubin is 11 which are both normal. I don't have a scan to see if the lesions have reduced until after the third cycle. I don't know how many lesions there is but I think I can safely say too many to count. There was significant progression and it wasn't specified as too how many or what size in the ct scan report. One thing I will say is that you must get copies of everything! Every scan, bloods and letters sent to your doctor.
As far as I know eribulin is what they call ' third line' treatment. Basically if you've had two chemos that haven't worked this is the next line of treatment. I'm hoping if this pins the lesions back enough I can have SIRT or TACE treatment but need to stabilise liver first.
please feel free to ask any questions or PM me if you want.
I've got liver mets, but I've never been given a gamma reading. Can you pls tell me a little bit about it, as I've got my next onc appt on the 17th. What's considered high, low, normal? Can I be nosey? How many mets have you got and have they told you the approximate size of the biggest?
If my current treatment isn't working, I may ask for Eribulin!
by the way smatich going to have mr dose on thursday afternoon at chelsea. ill be wearing a black and white bobble hat to cover my increasing awful and thinng hair x
wow! smjatich so pleased for you and i amjust about to start eribulin as well so makes me feel really positive. well sone you ss
thank you! The thing is you never ever get complacent with this disease ! Even when you get good news you think ' well when is it going to change to bad!' That's the cancer roller coaster that we all live with ! I'm just hoping to get some length of time out of this one as I've used up quite a few options. How's it all going for you?
wondered how everyone is getting on. I've had two cycles of eribulin and have had amazing results! I had significant progression in my liver which is just terrifying and after one cycle my gamma reading had gone down by 1000 ! My onc said it's rare to see such a quick response to treatment. I'm now nearly in normal range for gamma and everything else is normal ! I'm hoping this lasts! Having very few side effects apart from hair thinning even though I'm having the cold cap ! Tiredness is the main one !
hope everyone is well !
Hope all you Eribuliners are ok. Had first chemo last Thursday and then three days of steroids and felt OK. Now feeling as though I've been trampled on as steroids have wore off but hope that means the chemo is beating up the BC mets. Hopefully with bloods ok next one this Thursday...then, have I got this right? Two weeks off? Is the second follow on dose I receive this week any different? Wondered if it was the same amount or a smaller dose of chemo. How are you all? With Love.
i have my second dose tomorrow. Have you had many other chemos? I seem to be ploughing through them. I am looking at a procedure called TACE. I think I may have to go to Germany to get it though.
Good ode look to everyone having treatments and results this week!
Hi, I'm starting Eribulin next week, just waiting for appointment so will no doubt pop in here. Good luck everyone. X
Yes. So sorry I put the wrong name! I'm at Chelsea too. Pm me if you like we can swap notes!
smitch do you mean me? I'm at Chelsea xx
Thank you ladies for your positive and prompt replies.
Am am just having my first dose now. Hopefully coming out of the marsden tomorrow. Fingers crossed this one does the job
stillhere - are you at Chelsea or Sutton?
Had 6 months on Eribulin and then was given a spell. I have extensive bone and liver mets and went well on this chemo with some mets reducing. Each scan showed stable or improvement so I think it's a goody. My onc will look at using it again maybe. Am currently on Tamoxifen and have been well for 12 months. I had no side effects not even hair loss so v happy with it. Hope it works well for you
hi smitch. dont know but am starting on it next week also at marsden so lets keep in touch as see how we both go. although i have liver lungs and bones tend to hang out on cutaneous mets - don't know why they are a lovely bunch of gals! dont forget about all the trials at the marsden as well so lots of options yet xx
hope everyone is as well as they can be at the moment!
im currently stuck in hospital (Royal marsden) at the moment because I have had big progression in my liver and its inflamed and is affecting my stomach. I had pneuminitis on the e/e combo and to cut a long story short am blowing through all my treatment options. This is a really scary time and I'm struggling with it big style.
Has as anyone with liver mets had eribulin and if so any good results? I know we don't react to these treatments the same - just want to hear some good stories. If this doesn't work I don't know what I'm going to do....
many thanks for reading