Eribulin/ Halaven Ladies

Living with secondary breast cancer Treatments and medical issues
41

Hello ladies, hope you dont mind me joining in. I have just had to come off drugs trial olabarib which worked for 7 months. Have been battling breast cancer for 5 years now. Was pregnant when first developed it, have tried tons of chemos, double masectomys, ovaries out, tamoxifen, you name it, ive done it!!! It either grows during chemo, or pretty bloody quickly after coming off it. Olabarib managed to shrink my tumours so small they were “immesureable” in january, but just been scanned and the buggers are growing back again. I have now been told that i need to give Eribulin a go. Emotionally i feel very up and down, pretty bloody devestated really. To look at me, i look amazingly well, i feel well, my hair is nearly shoulder length, and i have no pain so just think why th hell would i put me and my gorgeous family through chemo again, especially as it keeps bloody growing, but what choice do i have??? Feel so great at the moment so the prospect of feeeling utter crap again on chemo is just something i dont want to do. Im now 41, i have 3 amazing young children, and an incredible husband and i just love life. I love to dance, sing, garden, and im always the dsilly bugger of everyone. My hair is bright red and the thaught of loosing it again is utterly horrendous. My children hate me having no hair. I have to tell them tonight that mummy has to start the horrible medicine again.
It has helped reading all your posts on here, even though it sounds like your all having a tough time. I have (not being concieted) so many friends, family and support yet it can be the loneliness feeling having cancer. Feel really cheated and that its really unfair.
But, i know i will get my fighting gloves on again, and bounce back, but right now im in the “wallowing” stage. Starting this drug in three weeks as of the “funding” issue.
Trying to cope with the thaught you might die, effects of chemo, supporting everyone else around you, and being a mum to three and having to do all the practicle things like brownies, swim lessons homework etc, just feels so daunting again. Normally i am life and sole and full of life but cant help feeling kicked in the guts again!!!
Feel better for just getting that all off my chest. Right, off to sainsburys, then parents evening, but yay, apprentice back on TV tonight.

Good to chat ladies. Excuse spellings.

Leigh

42

Leigh, you have had such a rubbish time but you sound like a fantastic fighter as well as a great Mum/wife x I don’t really know what to say but ‘hang on in there’.

Hugs and prayers

Love Suzanne xxxxxxxxx

43

Hi girls, you have another new recruit!

I had my CT scan results today as a result of liver pain in right hand side, referred pain into right shoulder and neck (really horrible, makes me walk like an old woman), nausea, wheezing and peripheral neuropathy down left leg, lower back. Outcome: yes, as I suspected the Capecitabine I have been on for about 16 months now has stopped working!

I was diagnosed with primary in April 2007 at the age of 47. Secondaries in October 2009 and have been on chemo almost non-stop since then. I have generally responded well to all the chemos I have had but it never goes away! Silly to hope so really but…

So I have come home from hospital and googled the drug and read various documents from the manufacturers concerning the side effects and frightened myself silly. My Onc gave me a run down/question and answer sheet for the drug but, as always, the questions start to pop up in your head a couple of hours after the appointment.

I have read through all the posts on here and was quite bouyed up at the start as minimal side effects were reported. However, as time has gone on you are mostly all experiencing pain and discomfort that I ALREADY HAVE!!! I feel really terrible. Fatigue like I have never had before, been sick twice this week, can’t seem to eat/drink much at all without overloading my stomach and I don’t even feel hungry.

My Onc has prescribed steroids (Dexomethasane) to take for the next 4 weeks in an effort to reduce my swollen liver - it looks huge! My last scan in November showed no change since the previous March! I was thrilled with Capecitabine and just thought I would have plenty of time on it. The report simply said ‘substantial progression’.

So, here I am in a quandry. Do I want to put myself, my family and friends through any more of this crap? What happens after the 6 cycles? Last time I had ‘substantial reduction’ it was very quickly followed by substantial progression.

Believe me, I am usually very optimistic but I really wonder whether it is worth bothering with this. I am sorry to be so defeatist. Hopefully I will buck my ideas up in the next few days. I am due to have the first cycle on April 3rd. If you click on my name you will see that I have had most drugs on offer. I am weakly hormone positive, Tamoxifen didn’t work at all.

Susie V

44

Hi Ladies,

hope I am not too laste to wish Tillycat a Happy 50th Birthday. Hope you did something good to celebrate.

As I said on my last message I have had 6 cycles of Eribulin which started O.K. but then stopped working. I am currently having a rest to give my body a break. Onc phoned me last night about 7pm to say she has another new chemo in mind to give me & will talk to me about it when I see her on 16th March.

I was feeling very down but have started to feel better knowing there is something else she can try me on.

Good wishes to all you ladies.

Chemoqueen

45

Hi ladies
Chemo queen - so glad your onc has a plan for you. I always feel better when I know what’s going to happen next, good or bad!
Suzie v- It does sound like you are having a tough time at the moment. At my hospital they have about 12 women on eribulin and my onc tells me that they have been getting really good results. Most of them had minimal side effects - I am obviously just a big moaner! Seriously though, I struggled at the beginning but once I had the steroids and pain meds sorted out it got a lot easier. I also had a problem with being allergic to one of the anti nausea drugs, once they changed that I felt much better - so I was blaming everything on the eribulin but a lot of it was se’s from other drugs. I did have a problem with this particular chemo being quite tough on my liver. It was swollen, like yours but got even more so. I think that your onc putting you on the dexamethasone before you start sounds like a good idea. I was put on steroids after the first session and I had a reduced chemo dose as well. I had a great response to paclitaxol a couple of years ago, my tumour markers went down loads every week but as soon as I stopped it they started going right back up again. My response to the eribulin has been much slower - TM’s have gone down very slowly (and not at all for the forst couple if weeks) my onc tells me that he is hopeful that they will be slower to come back up as well. One of the good things about this chemo is supposed to be that if it works then women were found to stay in remission for longer than women on other chemos. I think you should give it a try. It may be that you don’t get too many side effects and it works, a win win situation :slight_smile:
I have just come back from seeing my onc. He is happy with my response and suggested that while I am feeling well (which I do, for the first time in months!) I should have a break from treatment. I have to go for a blood test in 3 weeks then see him in 4. I can’t believe that I have such a long time ‘off’ it seems like I have been in the hospital pretty much every week for about the last year. 3 weeks sounds like absolute bliss:-))
Mx

46

Ps chemo queen, no you didn’t miss my birthday. It’s on thursday. I am going for breakfast with 19 girlfriends at a local hotel. All booked and organised for me so I didn’t have to do a thing. They thought I had more energy in the morning which is why it is breakfast :slight_smile:
My hubby is then taking me shopping (something he has avoided doing for 15 years so I don’t how that will turn out!) followed by lunch.
I have arranged a party for later in the year in the hope that I might have some hair by then. 50 and bald with a nice round steroidy face seems a bit much to cope with at a ‘big’ party. X

47

Hi Tillycat, thank you for the positive news about the eribulin. I have been in touch with my Onc to see what, if any, other options I have so we shall see. Otherwise I will be getting my first dose on 3rd April.

I saw my GP and she has reviewed my meds today and I have managed 5 hours sleep tonight all in one go! A first since over a week ago. I am hoping that the steroids kick in by the weekend and start to make me feel brighter and restore some energy.

I was 50 just over two years ago now and wasn’t predicted to get there. So, I need to stop moaning and get on with things. However, I must admit to be dreading losing my hair again and having the fat face - we are certainly together on that! Have a great birthday, breakfast and shopping trip. They often have sofas and newspapers in the bigger stores these days for hubbies to ‘park’ themselves, so it may not be as bad as you think, although I think the only thing I have ever successfully bought with my hubby was a pair of leather boots first chemo around! Have fun and thanks again for your imput, it is much appreciated.

Sue x

48

Hi ladies
just wanted to pop in + say hi, although my eribulin days are now over!
Tillycat- hope u have a fabulous birthday tomorrow :slight_smile: U SO deserve it so I hope it’s a brilliant day. Your friends sound lovely + I hope ur spoilt rotten. The chemo break sounds like a great idea too, make sure u make the most of it but get plenty of rest too :slight_smile:
chemo queen- sorry the eribulin stopped working (it failed miserably 4me from outset)- but glad u have a new plan in place now x
Hope every1 else on this chemo doing ok- grannyscouse etc x
Suzie- sorry to read about ur recent progression. I know wev chatted before + u have given me some good advice re carbo etc. Sounds like we have both had sig progression + decline recently but keep the faith, all chemos work differently so ournew treaments might just make a difference. My experience of eribulin was not good- it didn’t work at all- I had major progression everywhere in just 3 cycles. BUT my case is rare, eribulin is hailed as a bit of a wonder drug + most people seem to get at least a few months of benefits. In terms of how u will cope with it as you are feeling so poorly, I found it was easy street + know others who felt the same. Almost like not being on chemo (at least the 1st cycle or 2). My hair didn’t fall out so it’s not a cert- think the stats say around 50/50. Mine did start to thin slightly in 2nd ycle + it did increase but my hair was thick so was unnoticable to others even after 3 cycles. My brows + lashes gave started tothin even though I’ve stopped eribulin but I’m hoping the fact I’ve stopped will mean that will stop. I would say give it a shot+ keep everything crossed. best of luck x
I’ve started on xeloda last week, been a few delays due to me being quite poorly + breathless but so glad I’m back on chemo now following my disasterous scan results last month. Liver progression hasn’t altered liver function thankfully but lungs really giving me jib. Breathlessnes + pain has had me in+ out of hosp but thankfully, I’ve seen some improvement in QoL the last few days.
Love to everyone, hope the Eribulin keeps working wonders for you all :slight_smile:
tina xx

49

Hi everyone

I’m afraid I’ve just been a lurker on here lately. I’ll post again properly over the weekend. It’s been nice to read your reports.

I’ve just popped in very quickly to wish tillycat a very happy birthday. I hope your day goes even better than it sounds, which will be wonderful. Gosh, 19 ladies going for brekkie! I don’t think I know that many people!!

Have a great day, everyone.

xx

PS I’m feeling a bit better halfway through my 6-week chemo break, and we’re off to Nottingham now for a quick overnighter - got a good hotel deal.

50

Hello Ladies,

How is everyone ?
Wanted to let you know that after having 6 cycles of Erebulin Nov - Feb My Oncologist has suggested Avastin. Has anyone else tried this drug ? The Erebulin worked for a while but I have now got nodules breaking out all over my chest & back. Trying to stay positive.

Best wishes from ChemoQueen

51

Hi Chemoqueen, I post on behalf of my closest friend who has been battling multiple secondaries for two years, mostly lymph nodes, a bit in lung and ovary,triple neg. She is having a chemo break having done a year of taxol/avastin during which she became ned, she is carrying on with a maintenance dose of avastin, So it worked very well for her, hope it does for you too. he only side effects she had she felt were related to the taxol, tho some ladies have had nosebleeds i think. try older posts in the 'triple neg sec. and reccurences, I am sure there is info there. Hope this helps, Kim

52

Bumping for leigh36

53

Hi ladies

I have to gracefully withdraw from this thread and introduce myself on the Xeloda thread. I was at the hospital yesterday at the end of my 6 week chemo break to be told I won’t be going back on Eribulin. I’m not starting Xeloda for another 3 weeks though as it seems the onc wants me to regain more energy. So I’m going to enjoy the next 3 weeks and do as much as I can.

Good luck to all who are still on Eribulin, and I hope it works for you. Onc did say that my liver tumours hadn’t progressed so Eribulin was doing what it was paid to do.

Good luck to us all.
xx

54

Anyone still on Eribulin?
I have just started taking it and to be honest am finding it not so bad - but from reading the previous posts it looks like this may change in a couple of cycles time. How depressing!
It is the wait at the hospital to have the treatment that drives me mad - it generally takes them 4-5 hours, which for a drug that can be administered in less than 10 minutes is highly frustrating. But I guess most of you on here don’t need telling that…
2beans

55

Hello,
How is everyone on this chemo or have used it before??
I might be starting this chemo next week.
Really need something that works well this time.
M xx

56

Hi
I’m new to the forum. I want to know how long people have been on Eribulin?

I’ve had 5 cycles and I feel great, my 3 month CT was stable and slightly better in some areas, so far I haven’t lost any hair.
What I’d really like is a crystal ball!!
Thanks

Moomoo

57

Hi , just tan out to start eribulin any success ? Xx
louise

58

Hi pinklou
I’ve had 6 cycles of Eribulin now and I did have success as my post mentioed, my last CT scan was acually better than the previous one. I have a lung met and some pleural thinkening, and the lung met had not grown and the pleural thickening had improved. I also have skin mets, and these are flatter and less red/painful/itchy than before. The distribution on my back is smaller but remains the same on my chest.

I only have fatigue on ERibulin, none of the other possible side effects. I am lucky that I havent lost my hair. I would recommend it.

I’d still really like to know from anyone out there how long they have been on eribulin?

Thanks

59

Hi pinklou
I’ve had 6 cycles of Eribulin now and I did have success as my post mentioed, my last CT scan was acually better than the previous one. I have a lung met and some pleural thinkening, and the lung met had not grown and the pleural thickening had improved. I also have skin mets, and these are flatter and less red/painful/itchy than before. The distribution on my back is smaller but remains the same on my chest.

I only have fatigue on ERibulin, none of the other possible side effects. I am lucky that I havent lost my hair. I would recommend it.

I’d still really like to know from anyone out there how long they have been on eribulin?

Thanks

60

Hi folks (I call us the Eribulin Spongebobs… LOL)
Quite a few of us on this chemo at the moment. Some of us use this thread,
breastcancercare.org.uk/comment/2122876#comment-2122876
I’m one of the less lucky ones who has lost most of my hair, only wisps left, and eyebrows thinned too… BUT… I just had CT scan results - liver and bones stable - after 3 cycles (6 treatments) so it’s looking hopeful!
My hospital doesn’t give steroids with eribulin, but I know the fatigue pattern for my treatment weeks now, and I have enough “normal” days to keep going.