I was on Eribulin twice, once in 2017 (I think that was the year!) for 8 cycles then again in 2019 as I was aware that it could be used twice especially if the first time it had not shown itself to be ineffective. For both courses of the chemo I had to have gcsf injections as my wbc and neutrophils were too low to enable me to have the chemo in Day 8. I know not everyone needs them but it could be that I did because of the number of chemo regimes I’d had and my bone marrow not working as efficiently as it should. I had no problem administering them myself and it didn’t cause me any problems but did keep my blood counts high enough to allow me to have future cycles on time.
As to meeting others I think with a low blood count you do have to be cautious although I have met my immediate family (daughters and son in law) whilst on chemo but have kept my distance. I don’t go into shops and generally abide by the guidelines for the extremely vulnerable group but do get out for a walk most days as I am unlikely to come within 2 metres of anyone if I’m out and about. I think I would have gone quite stir crazy if I’d stuck to the guidelines of not even venturing out of the front door for all these weeks!
I am new to the forum but I really appreciate you sharing, Ramade, and I pray you are comfortable in these weeks and have special times with loved ones.
I am on Eribulin but have just had it delayed for a week due to low neutrophils. I am not sure if my oncologist will use those injections. They haven't been mentioned and she is reluctant to make me endure too much treatment as I am getting to the end of the benefit of treatment too. It all feels quite uncertain but also peaceful. I am so exhausted from treatment. It has been five years for me so far. But I would like to go for as long as possible for my daughters and husband.
I have a couple of questions - did anyone else have the injections? And also, is anyone making any changes in terms of seeing people these days? I am shielding but I am thinking of changing that if my treatment ends.
Thanks so much, bless you all,
Hallo Ramade, I've only just read your post and wanted to say thank you for being brave enough to post about your future decisions. It can't have been easy but is very helpful to me. I think we are some of the oldies on this forum! I have paclitaxel still as an option but don't feel I can take any more IV chemo, it also doesn't seem to work for me anyway.
I've had a looong dance with cancer, primary diagnosis 25 years ago, local recurrences 11 years ago and secondaries 7 years ago. I have only mentioned this so that the many newly diagnosed can know that you can live well with secondaries for a long time.
If you feel able to reply, do you have any family members as carers? Do PM if it's easier. Sending you hugs and peaceful days xxxx
these are all things I would like to know about..and to hear about, thank you. I don’t know what questions to ask, except about pain and the balance between pain and having a clear head. I suppose my other big concern is about family, how everyone copes.
Hi Ramade I remember chatting to you on posts before and just wanted to send you huge love and respect, you are so brave to post and you are showing such strength in your approach to deal with things in a way that you choose. Although I realise it is a bit of a horrible choice you are faced with. It is important to let family and carers know what you want. I am an ex nurse and nobody wants to face these difficult choices I have told my family my wishes. You are inspirational and have given hope,support and advise to many on this forum. Feel free to msg on here or private message any time. Love and hugs Liz xoxo
Thankyou Nicky, Mexico for your kindness. I have been worried about pain as my body starts to close down. Well the district nurses come every week to check on pain. A special bag of meds has been delivered for the end. I signed a form to say I want to die at home. I also signed that I did not want to be resuscitated. My special nurse comes every week and my gp does as well. Dr ..... has become Christian name. All are being very kind. I had a day bed delivered so that I am not cut off from the family. I am posting this because it is something I wanted to know but difficult to ask. As things go on if anyone has further questions please ask.
love to all of you,my friends. Ramade xx
Sending you huge hugs, such a horrible position to be. I hope you are coping Ok with the situation and wishing you longer time, as you’ve currently shown, you are a real star.
i have been trying to think what I would want people to say, when I find my myself in this same place you are in (as I will), and when there is no more options for treatment.
I am relatively new on this site, but I know you’ve been on this forum, for a while. I am triple negative, so have been interested in your journey and really welcomed your contributions. And I know that things have been very tough for you recently. But I have admired your resilience and positivism and now your dignity. I want to wish you strength and gentleness and I’m hoping for something good to happen and that you’ll posting on here for a long time to come!
Hi Lindy, I was on erubilin and it was fine,just didn’t last very long. I have been taken off all chemo now because my body has had enough I’m told and I wouldagree with that. Sadly I have been given a few weeks left to live, but I managed it for 20.
i would like to thank the many friends who have come and gone on this site.
Sorry not been on here for a while.
3 years ago secondary cancer diagnosed have been on capecitabine, paclitaxel, vinorelbine and have now been on erubilin since February 2020, just before lockdown began!
The first few cycles were fairly tolerable with the steroids. I then tried extra dose of steroids to help with the side effects but they didn’t have much benefit.
Ct scan showed no change or progression so asked for an extra week off treatment.
I now have a reduced dose of erubilin and back to IV steroids and 2 days of tablets.
Ok now to the question, I am really struggling with neuropathy in hands and feet. My hands and forearms have no strength and I’m just really fatigued.
anyone else suffering with this and any tips?
I saw oncologist on Wednesday and she said it was down to me if I continue, hoping that the reduced dose will help reduce the neuropathy ? She said that a 1:3 suffer with this.
What a scary time for you and a shock from your oncologist. I have had Eribulin but was unaware of one of the side effects that lovemama has pointed out so maybe this is the reason your oncologist said that? I would try to find out if this is the case, or what exactly your oncologist means. Wishing you the best of luck and that chemo of some sort will help you.
Hi Shirley, please check with your onco / medical team.
ps. I am NOT any medical. I am guessing would it be due to the 16% side effect dyspnea.
I’m just about to start Eribulin after a very scary week.
I’ve been on Vinerabine without much success (2 or 3 cycles) so my onc & I knew there would be a change. Last Monday I awoke with breathlessness & was advised to go to the Marsden (my usual hospital). Anyway to cut long story short my oncologist ended up telling me I might not have long to live. I was absolutely terrified and devastated as you can imagine. He kind of implied there was nothing else he could do. Then he came to see me in the afternoon and told me he would try me on a new line of chemotherapy (Eribulin) but this could shorten my life.
I asked him today what are changed And he said that the CT scan has shown that the ‘narrowing of my airways was quite noticeable’.
Nice to see cape is working well for you.
It is always nice to hear good news.
Helen, I managed 20months of Capecitabine before Eribulin. I knew about you as I read through the entire Eribulin thread when I knew that was what they recommended next! You managing 23 cycles was a great comfort! A few people (in scientific case studies I’ve read not people on this forum) now seem to be in 30 plus cycles so I sure hope I join that group! I hope Cape is kind for you and keeps working.
I also hope carboplatin works well for you Nicky! Sianx
That's amazing you remembered I'd clocked up 23 Eribulin cycles! So pleased that you are currently stable and tolerating treatment. After eribulin I managed 28 weeks of paclitaxel, 3 cycles of epirubicin and have been on capecitabine since last June. Had MRI results today & liver mets have shrunk a bit so very pleased about that!
Take care of yourself.
Well done Sian, fir being stable and for getting so much of a benefit from Eribulin 😊
I think I was up to 21 cycles in total but they’d been split between my 2 treatment times with a Eribulin. Although it’s a fairly well tolerated chemo it is still very tiring, as you have said and I also used to do or plan a few more things in the week when you don’t have treatment.
Im currently on my first cycle of carboplatin which is tolerable and so far not as bad as I’d imagined. Just hoping it kicks the little uggers back!
This thread has gone quiet lately but I hope there are still other Eribulin ladies on this forum!
I had my latest CT scan results today, and I’m still stable (phew!) So I stay on Eribulin and had day 1 cycle 21 today.
Sorry to see that Nicky is having to change treatment. I’ve put that worry off at least for another 3 months (and the next scan,) so that should mean 4 more cycles at least. So it looks like I’ll be able to pass Helen’s current grand record of 23 cycles and make it to at least 25 cycles. I saw yet another new oncologist today but she said immediately I was in the room that the scan was good, such a relief! I still hope for NED but realistically I have to be satisfied with stable.
I was secondary from the start over six years ago liver and bone and very rarely feel ill. This is my 4th chemo. I do now have to admit to a more general level of tiredness, but I’m as active as I can be especially in the so called ‘treatment break’. Sianx
Hallo Eribulin ladies! No hair, eyelashes, eyebrows, watery eyes, runny nose...yes. I have found Eribulin quite doable though in that I haven't felt too sick and guts settle after 3-4 days. Done 3 cycles now and CT next week, result on the following one.
The big question...is it working? I can feel some of my lumps and bumps and they are still about the same. I'm wondering whether a partial response when options are now few may be considered by oncologists??
As Nicky says, I don't think oncologists would agree a drug that could potentially exacerbate cancer but each time there is no response and a 3 cycle delay in discovering this, your cancer is on the march. Perhaps that is what they mean?
Happy New Year to all xx
Hi all, this is a weird one but Eribulin gives me thrush. I had to stop for an operation and it went away,back on it now and wham it’s back.i have to take fluconazole every day.
could be worse I suppose but it’s working still I hope.
love to all
Hi Rod, and welcome to the forum.
When you say your partner has terminal bone cancer do you mean breast cancer that has spread to her bones - and further? If its breast cancer this is the right place but if its (originally) bone cancer that is now terminal it may not be.
Assuming its secondary/stage 4/'terminal' BC I'm surprised that the oncologist has said Eribulin would make things worse. Maybe you need to find out why this has been said, are there any other factors involved? I have been on Eribulin on 2 separate occasions, once in 2016 and I'm on it again now. I only had a limited number of cycles in 2016 and it was still being effective when I finished the course of 8 cycles. Therefore it has been possible for me to revisit it as a chemo option again as my SBC had not become resilient to it in 2016.
I have been on this forum for over 11 years now and have never heard of an oncologist who has said that it could make things worse, and that was from the beginning when it was licensed in the UK.
I would imagine that Gill will have regular CT or other scans to determine if Eribulin is working and hopefully from the early ones of those it would see if it has made matters worse. By worse I mean not worked/been effective as I can't see how it would 'feed' the cancer to make it any worse than no treatment at all.
Sorry I've not been of much help but I do think you need to clarify what was meant with your oncologist. If there are other issues that have not been explained to you then that might be why the comment has been said.
Good luck and do come back on here with any other questions or an update.
Hi, my partner Gill, has to go onto a course of Eribulin, as the chemo she is currently on has stopped working. She has terminal bone cancer, and cancer has spread in many parts of her body. Gill has had cancer for 4 years now and is at stage 4.
The consultant has stated that the drug Eribulin can go either way. It can work and help to beat the cancer Gill has or it can make her worse than she is and shorten her life.
Obviously hearing this has scared us both both as we don’t want her life to be shortened and then end! But at the same time I want it to work and for Gill to live on...
So we are both not sure how to approach this, as we have not met anyone or talked to anyone who has the same issue as Gill has right now.
So I have come to this forum asking for help and advise about this.
I hope everyone on here is feeling well 😊
thank you for reading
I agree with you it is so annoying having constant watery eyes and running nose. I have the same. Tried various over the counter remedies but without success. Mine must be caused with being on and off chemo for last couple of years since diagnosed with liver mets.
Hope chemo is working well for you. Do you think you will get a break from the chemo if it working?
Ramade sorry you are suffering with horrible side effects Hope when you have CT scan it has all been worth while.
Thankyou Nicky, yes you're right it is all those small side effects which all at the same time drive you mad.
Anyway I do hope you have really positive results after your ct. It would help a lot to know Erubilin is at least working. Hugs to you.
Hi ramade, sorry you are feeling this way. I don’t feel exactly the same way as you do but I must say that when I was on Eribulin a couple of years ago the more minor side effects really got to me and got me down quite a bit. All the small things like runny nose, streaming eyes, no eyebrows, no eyelashes etc that affected me every day and which most people might consider insignificant and therefore dismiss them. After a while they can really get you down. Add to that the fear about whether it’s working or not (my constant fear about all treatments) and the tooth extracts it’s no wonder you are feeling so down. Although I can’t help in a practical way I just wanted you to know you’re not alone and sending a big hug.
ps I’m still on Eribulin having gone back to it earlier this year (at the moment anyway but awaiting my CT to find out if it’s still effective) and all those annoying SEs are still as annoying!
hello to all on Eribulin. I am feeling really down and losing hope on this meds. I have never felt this before. Awful fatigue is not helping and waiting for a load of teeth extractions caused by chemo. I have been upbeat all my life, but I can.t seem to break this. Anyone else had their mood affected like this?
Hi I have my abdomen drained often and its not that bad, much more comfy when it done, I normally have about 3/4litres taken off x
Hi I too am on eribulin but made me so sick this week only feeling not being, I also have build up of fluid on my abdomen which I have drained two weekly, do u have this x
Yay to bananas and custard, also rice pudding, Greek yoghurt and white bread! Vinorelbine will put paid to any healthy diet!
I am waiting for my next tablet chemo to be dispensed, having seen my doctor. He has suggested Omeprazole for painful stomach and bloating as well as Buscopan which is an OTC medicine,as well as anti sickness. Like you, I haven't had constipation, Imodium always to hand though.
I have done one cycle and the gastro problems do go away, also I'm having tablets rather than IV which probably makes it worse. Good luck riversidedawn x
Hi, just popping back on this thread after stopping Eribulin in July and moving on to Carboplatin. Wow! Everyone's been busy and moving through treatment options too.
I had 2/3 cycles of each of Eribulin and Carboplatin followed by scan. Neither worked and there's been spread in liver and enlargement of other abdominal tumors.
I am now on IV Vinorelbine having it day 1 and day 8, I'm day 6. I can't find Ramade's post that Stillhere refers to, but I too have bloated belly and what feels like fluid gathering in the pubic area. I had it just on the left side previously around enlarged lymph nodes but it seems to have spread which is annoying and uncomfortable but not painful. I was warned about constipation with vinorelbine, which isn't a problem for me with a high output stoma!
I quite fancy bananas and custard!!!
Helli Stillhere, doc did x ray to see if more cancer was causing bloating, no, cause was fluid build up and constipation, how I hate chemo. but no choice for us i'm afraid!
Me to regarding veins. I have lymphodema in left arm came on after flight to Egypt 9 years ago. Arm not massive about 1"" on top of arm but does make it awkward for tops.
I must admit I am getting sick of being on chemo all the time. I have only got one more hormone treatment to try apart from the injection one which seems to be prescribed alot with one of the new treatments.
Good luck when you start chemo on Thursday.
Hi Ramade, interested to read about your abdo pain and bloating, I've just done my first cycle of vinorelbine in tablet form and my stomach/abdo has been so painful,irritated and bloated, like you I thought it was my cancer but it is improving slowly, seeing my team next Wednesday so I will be asking for advice. Can't spend the rest of my life on bananas and custard!!
Hi Lorraine, don't worry about having a port, I wish i'd had mine put in earlier. The stress of 'can't find a vein' and 6 tries has gone.
Only had 2 cycles of Erubilin and can't have 3rd yet because white blood cell very low.
you are doing amazingly well having both erubilin and paclitaxel together, treat yourself to a nice cake and lie on sofa with good film..
hugs Ramade xx
You are right about new treatments only being for first line. I have asked my consultant in the past if I could have a treatment that had just been authorised by NICE only to be told first line only. It seems to me it is all a question of money.
I don't know if being ill recently was a build up of being on constant IV chemo for the past year nearly every week on Paxitaxol and Eribulin after that or whether I just had a hard time on Eribulin.
As regards veins, I struggled with one arm as have lympheodema and was persuaded to have a portacath fitted in my chest - not that I like it!
Good luck with your veins this time.
I can understand you wanting to get back work and some sort normality. You having amazing coping with all the chemo you have had. I know you mentioned you have exhausted all the hormone tablets but there does seem there are alot of new treatments coming whether they are available to you and I is a different story. Some new treatments seem to be only available as a first line. How did you find the last chemo?
Not looking forward to going for CT scan as I know they will having trouble finding a vein.
No am signed off and have been since end of June. Could not have coped. Depending on how chemo treatment goes I do hope to get back to work three half days 😄 for some normality.
I wish you all the very best for positive results and with your bloods. Let me know how you get on.
Thank you for update on your treatment but so sorry it has failed. Hope the new treatment is kind to you with few side effects. If I remember correctly you were working whilst on chemo . Are you still managing to do that? Hat's off to you if you are.
I have just had week 10 of vinorelbine . It has been OK apart feeling very tired. I asked last week whether I could be anemic. My haemoglobin is down. Should be 115-165 mine is 109. That could explain the tiredness. Will ask when I see oncologist .
Scan next Thursday.
Just by way of update my scan showed a new met in my liver has grown. The others in liver and numerous bones have however thankfully stayed the same. Eribulin is sadly no longer working for me.
I had struggled over the last couple of months with very poor appetite but am now on steroids and am eating like a horse and feel like an Ever Ready bunny as has also increased my energy levels a lot but sleeping is not so great..
I start new chemo - Carboplatin (Gemcabo) next Thursday 26 September so fingers crossed for that.
I wish you well with your treatment.
I also wish all on Eribulin a positive outcome. Is different for all of us!
Ramade - I cannot say I had stomach problems but I do hope you get sorted.
Thanks lovemama for your reply. All my cancer is in the upper organs at last scan- brain, neck, chest, bones, brachial plexus, this swelling is new, I thought it was the meds but I have another scan next month so we'll see.
A lot of my relatives live in Toronto, they went 40 years ago, given the situation in the UK I wish i'd gone to join them.
Love to you
Hi Ramada, I am sure you will figure out with your onc. But, seems you did not mention any metastatic to organs in the lower abdomen. Finger crossed, I hope the bloating/abdominal pain is due to side effects and not any serious problem.
Below paper is extracted from BC cancer agency of the Canada Provincial Health Authority's website.
ps. I live in British Columbia, Canada.
hello all, have had 2 cycles of Eribulin and my stomach has become really bloated and today has started to become painful.Looking for answers I see this is called ascites. I am going to tell consultant when I see her, can anyone tell me how it is drained off,sounds scary. thanks
Thanks and I will let you know how things progress.
Best wishes with your treeatment.
Sorry you are having such awful time with this chemo. When you think you have had such a lot of different chemos over the last few years.
Hope whatever your next treatment is much kinder with no side effects . You deserve it for what you have been through.
Please let me know how you get on when the oncolgcolgist decides what to try you on.
Thank you for your reply. Yes I will let you know how I get on with CT scan
Hope you are getting on well with chemo with few side effects. It is always good to get first scan out of way when we start any new treatments.
I have not posted for a while as I have been a bit under the weather. Unfortunately Eribulin for me has been hard to tollerate and is longer working.
Fortunately treatments are different for each person and I wish all of you all the very best with your journey on Eribulin.
My main issue has been no appetite but I am now on steroids which are helping me eat and giving me some energy.
Consultant says still options which we will discuss after CT.
Best wishes ladies.
Lorraine 😆 x
Hi Lindy and all, good luck with your scan, I have not had what you're on as my cancer has mutated so there are at least 2 different cancers in my head and neck. Hoping Erubilin works or they're going to do radiotherapy. Scan in 2 months .
let me know how you get on,
I was wondering how you were getting on with this chemo. Have they said yet when you are going to get your first scan since starting it.
Update from me Navelbine is going OK having my 7th lot of tablets later on today. Just got date through for first scan since starting which will be end of September. It is always a worry first scan to see whether treatment is working .
hi everyone on Erubilin, Nicky,Linda, I know you both have been on this site for as long as I have, we're all such a family here,i'd be lost without it. Nicky, you're right about steroids, I am not taking them next time, sometimes sleep is more important.I've already bought a Winter wool cap which I think is trendy,my daughter says it is cool so that sounds acceptable. Hopefully this treatment works for all,if it works it is easier to deal with side effects if we get good news.
Thankyou all for replying.
hugs to all