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Chemo Buddy Needed - Anyone Currently on Eribulin?

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Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Nicky

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. 

Linda 

Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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.

Ramade x

Community Champion

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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.

Nicky xx

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!

Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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?

Ramade xx

Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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

Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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

Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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

Community Champion

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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!!!

Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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!

Ramade x

Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Lorraine 

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. 

Linda 

 

 

Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Thanks Ramade.  Wishing you well. X

Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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!!

Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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

Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Linda

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.

Lorraine x

Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Lorraine 

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. 

Linda

Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Linda

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.

Lorraine x

Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Lorraine 

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. 

Linda

Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Linda,

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.

Best wishes.

Lorraine

 

Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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

Ramade

Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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.

http://www.bccancer.bc.ca/drug-database-site/Drug%20Index/Eribulin_monograph_1Apr2016.pdf     

 

 

Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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

ramade

Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Linda

Thanks and I will let you know how things progress.

Best wishes with your treeatment.

Lorraine xx

Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Lorraine 

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. 

Linda 

Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Ramade 

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. 

Linda 

Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Ladies

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

 

Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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,

Ramade xx

Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Ramade

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 . 

Linda 

Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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

ramade xx

Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Nicki, I’m on an 80% dose too! Sx

Community Champion

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Sian/London1

Good for you and enjoy your holiday.

When I was on this chemo in 2017 I coped really well but this time around I seem to have been plagued by added complications such as awful toothache for 2 cycles and picking up a stomach bug for the next cycle after those 2! The disease that keeps on giving! Anyway this last cycle was the first one where I have felt similar to how I was in 2017 although with a bit more fatigue I think. I find out soon how things are going when I get my CT results so fingers crossed for all of us.

A quick question, if you don’t mind, when you say reduced dose do you know how reduced that is? I’m currently on 80%, as I was in 2017, but do know it can be quite a bit lower and still be effective. If I’m to stay on it longer term, like you are and other ladies have been I’d like to know how low a dose I could ask for. Just adding more info to my stash! 

Im also mimicking you with the hair loss and eyebrows and lashes (same thing happened last time but with less hair loss). Eyebrows few and far between but am using a tattoo eyebrow dye so at least I wake up and can see them each morning. Eyelashes still hanging in there but will eventually go as they did last time so I’ll have to get out the false eyelashes again for special occasions!

Good luck everyone on this tolerable chemo.

Nicky xx

 

Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hello all Eribulin ladies! Hope you are all enjoying the fine weather! I started this (my 4th chemo, 3rd IV chemo) dec 2018 and I’m now in between doses for cycle 12, so just over 8 months, the average according to statistics is 10 months but I hope for more than that. As in the words of George Canning (UK Prime Minister 1827) ‘I can prove anything by statistics except the truth’.  (A favourite quote!) The last scan in between doses cycle 11 while on a reduced dose was stable. The reduced dose was due to low neuts even with G-CSF injections but now the injections maintain the neuts at well over 2 in the ‘normal’ range. After the initial shedding my hair is back although it did start to shed again after cycle 11 but it is minor. This time though it is a blond white and curly as opposed to my real hair colour of a darker strawberry blond and wavy.  But at 58 I can’t complain too much as my sister and mother were both white/grey at 30. It is much thinner than before which I don’t like but at least it is there! No sign of eyelash regrowth though but I live in hope! I have to paint in eyebrows too as they are also practically non existent. I still hate seeing myself in mirrors as I hardly recognise myself! But I (mostly) feel really well and am mostly doing what I want to including riding my lovely horse. Off on holiday next week too! It has been a good and very tolerable chemo for me, and long may that continue and good luck to all others on it! Sianx

Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Best of luck with this one.  So far I have found it to be a bit less difficult than all the previous, except for the cough.  However, a short course of Prednisone has helped considerably.  My hair has thinned, but not fallen out.  That's a blessing!  So tired of looking like Kojak.  I'm on the third cycle, so I am interested to know how your experience goes with this one.  Sending good thoughts your way!

 

Laraine

Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Morning Ramade

Good luck with your new chemo and side effects are minimal. 

You are amazing lady having gone through all them treatments and loosing your hair 5 times. 

Fingers crossed it works well for you . 

Linda 

Community Champion

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi ramade

I hope you get on well with Eribulin and that it works for you, I know you’ve had lots of other treatments so my fingers are crossed for you.

A couple of things about Eribulin. I don’t take steroids at all for it so it's not essential to take them if you feel you don't want to.. I think some chemo units/ones prescribe them routinely but the SE s are not as significant as say the taxanes when you do really need to take them. You could try by lowering the dose until you either get to the point you don’t need them or just take a very small dose?

Also hair loss tends to be hair thinning from my own experience and the ones written on here over  the years. I was on this in 2017 when my hair thinned about 50-75% but I do (did!) have very thick hair so I got away with wide, soft, hair bands rather than a full head cover. This time around (I’ve just had cycle 4) it has ‘dropped’ twice so I’m down to about 10% hair which is truly awful. I have again been disguising it’s thinness with the same headbands as I had and also, in the hot weather, caps and a sun hat. I was going to shave it all off but asked my adult daughters if I should (they would definitely tell me the truth!) and they said I should keep it as it is but keep disguising the lack of it. I call it my ‘illusion of hair’ as it’s so pathetic. In 2017 I found it did start regrowing though after a few cycles so maybe it will thicken up slightly? Other ladies have reported that it grows back as well, so I’m hopeful it will.  

Good luck to you, and all other Eribulin ladies

Nicky x

Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hello brave ladies glad to find this thread, I started Erubilin yesterday as so many other treatments have not worked.

Was given 4 steroids, how nice it is to be awake all night. NOT. will not be taking them tonight. you know how you wait for horrible side effects to kick in immediately, well nothing as yet, next part of cycle 1 next week. This will be the 5th time I have lost my hair, i'm sure my cancer is watching me and as soon as hair gets to the not hat/scarf stage it says right let's go for her again!!

I want to say here how brave you all are, during my time I have met loads of people who flatly refuse to have any treatment so well done all.

love and hugs

Ramade xx

Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi there, 

I have been on eribulin now for two cycles.  Haven't experienced anything too terrible yet....hair thinning and some lethargy.  But I have developed an unmanageable cough.  Wondering if anyone else has this side effect.

Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Nicky

Hope you cope better on Eribulin this time and that you have good results.  It is strange how side effects are different for each of us.

As for hair I lost mine on last treatment Paxitaxol but on Eribulin it has been growing back albeit grey!

I have never been offered any surgery to liver.  Maybe because I also have bone mets.

Good luck to you and all of us fighters.

Lorraine x

Community Champion

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Dawn

Sorry to hear that Eribulin is no longer working for you and that you've had such a tough time of everything.  Fingers crossed for Carboplatin.

I'm posting on this thread as I am back on Eribulin after about 18 months off it.  I had 8 cycles back in 2017, this was the suggestion from a second opinion oncologist as my platelets were acting up and he felt I shouldn't have more than 8 cycles.  As it was my platelet count was absolutely fine during that time and Eribulin worked well on my liver mets getting rid of them all except one larger one, which it was shrinking.  I went onto hormonal treatment which also worked well, although the larger liver met started to grow again.  I then had surgery to remove it plus 2 tiny ones.  Everything was still stable after a year but in April this year an MRI showed I had some lesions in the liver again.  As I know Eribulin can be given for longer cycles (certainly more than 8) I asked to go back onto this once I knew the hormonal was no longer effective and also that Eribulin had still been effective at the end of the 8 cycles even though it had not got rid of all the lesions but they were still shrinking.

So far I've had only one and a half cycles (the dose on day 8 of my first cycle didn't happen again due to low platelet count) and am due to start my 3rd cycle tomorrow.  My platelet count has now recovered well so I am slightly less stressed about it now!  I am having gcsf injections to boost my white blood cell count as last time I had Eribulin in 2017 my wbc and neuts hit the floor.  As in 2017 I have lost a lot of hair! I'd guess about 75% which leave me with some very straggly locks!  As before I'm wearing wide hair bands to cover my loss and hope that, as before, my hair starts to regrow whilst on the chemo.  Just waiting now for the eyebrows and eyelashes to fall out (as they did this before, unlike any other chemo I'd had), this was more annoying that the hair loss.

Hope all of you still on this chemo are coping with the side effects and that it continues to work well for you,

Nicky x

Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Morning Dawn

Sounds like you have had an awful time but am so glad you got through it.  You are a true fighter.

I really hope Carboplatin sorts you out.

When is your first treatment?

Lorraine x

Community Champion

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Lorraine, I still haven't discussed timescales directly with him. When my bowel obstruction was identified I was very poorly and they didn't know if it was operable, and if not it looked like I had as long as it took malnutrition to take me. We had a brief discussion about DNR which we agreed we weren't ready for unless I was going to come round as a vegetable. Onc did say we would start talking in months and cycles for the first time. 

But somehow my surgeon was amazing and I've bounced back, keeping myself well informed and on top of the nutrition.

After my latest scan he has indicated that if we cant get the liver under control, if could be ad short as 3 months before liver gets too broken to keep going. Presently affecting about 10% of the liver and it can function  well until 80-90% diseased. I'm not suitable for rads or any other surgical intervention. So come on carboplatin!!

Community Champion

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Lorraine, I still haven't discussed timescales directly with him. When my bowel obstruction was identified I was very poorly and they didn't know if it was operable, and if not it looked like I had as long as it took malnutrition to take me. We had a brief discussion about DNR which we agreed we weren't ready for unless I was going to come round as a vegetable. Onc did say we would start talking in months and cycles for the first time. 

But somehow my surgeon was amazing and I've bounced back, keeping myself well informed and on top of the nutrition.

After my latest scan he has indicated that if we cant get the liver under control, if could be ad short as 3 months before liver gets too broken to keep going. Presently affecting about 10% of the liver and it can function  well until 80-90% diseased. I'm not suitable for rads or any other surgical intervention. So come on carboplatin!!

Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Thanks for the tips Dawn.  It all seems a bit daunting.  Have never discussed with oncologist any timescales for my outlook.  Ignorance is bliss. 

Lxx

Community Champion

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Thanks Lorraine, great news on your results. I hope the neuropathy settles, I've been warned that this is a risk with Carboplatin as it was with taxol and eribulin, I've been fortunate on that front so far.

Has your oncologist or GP signed form DS1500 for you? My onc did it as soon as my organs were affected, it fast tracks you to benefits and can support your ill health application. We are technically terminal when we get stage 4 diagnosis but it appears that insurance, pension etc take terminal to mean you've been given a specific time frame under 6 months. I had to be referred to occupational health, complete forms for them and provide contact details for GP and oncologist who in turn had to report on my health and prognosis. You do need to have a thick skin as to support your application the medics need to report on the very worst case scenario and say that you are not fit to work and have a poor prognosis.

Good luck with whatever you decide to do xx

Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Dawn

So sorry your results are not what you wanted.  It is so upsetting and frustrating every time we have to go through this.  Hopefully Carboplatin will be the answer for you. 

Thanks for the information about retiring on ill health.  Have been in touch with my pension company.  They asked me if my cancer is terminal and was not sure how to answer.  They are sending me out some paperwork.

As for me I have this morning been told things are stable for now.  Having been off Eribulin for five weeks due to problems with neuropathy I  am to restart Eribulin but on a lower dose.  Am having pain in my shoulder also so being referred for bone scan.

The rollercoaster goes on.  Think carboplatin is next once this stops working.   All hospitals must follow same treatment plan.

It's awful and worrying getting the bad news that things stop working its the waiting and wondering.  I hope you manage to have a good weekend.

Lorraine xx

Community Champion

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Well that's it for me on Eribulin, progression continues in my liver so moving onto Carboplatin next week. Onc said I could stay on Eribulin ad I'm well on it and it's probably slowing growth but he wants a better result and I may not be strong enough for Carboplatin in the future. 

 

Hope your results are better and you can stay on this for a while and it's a kind drug. Xx

Community Champion

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi ladies

Sooo fatigued this weekend, Friday was day 8 of cycle 3. Hair loss has stopped. 

Vicky, I'm seeing onc on Wednesday. I've done some googling on platinum chemo, looks like anything ending in "inum"!

Sian, your horse sounds amazing! And having quality time away with him must be so special rather than ending up with daily chores and not so much fun.

Lorraine I should get results on 10th. Big week for both of us. I worked for a school trust so we have local government pensions. I was only there from Sept 2016 but the policy is that if you're eligible for ill health retirement, then they top up the pension as if you're employed to retirement age. I'm 52 so they've added 15 years to my fund...... I am very fortunate, so lucky to have changed jobs when I did. I can get 25% of the pension value as a lump sum plus annual pension. Because of length of service it's only about £3500 a year but tops up PIP nicely. 

The procedure is that either the company can suggest retirement if you've had lots of long term sick leave or you can request it. There's a danger that if you request it and you don't quality, they can then dismiss you on capability grounds as you've said you're no longer fit for work! It's worth looking into though.

Lots of hoops to jump through. I applied when I came out of hospital on 6th March, retirement date is 7th June but I'm still waiting for lump sum and first monthly payment.

More news in a few days after scan results.

Dawn x

Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Morning London1, Vicky77 and Riverside Dawn

I have now had another CT scan and am due to see Consultant for results on 11 July.  I have now been on a break from Eribulin for a few weeks and am enjoying not having any treatment.  If only I could stay this way.  Unfortunately this is wishful thinking as cancer does not take a break!  My last and only other scan since starting Eribulin was inconclusive as imaging was bad.  Hopefully this one will give me answers as to whether Eribulin has worked.  If not it will be change again.  Still having problems with neuropathy and with my legs.

I have been signed off work to rest and although part of me wants to go back to have some normality I do wonder about stopping work.  I saw a couple of you had taken ill health retirement and am not sure I fully understand what is involved in doing that.  I have a work pension and assume I would need to contact pension provider?  Our HR at work is not that great.

I wish you all well either continuing on treatments or with changing to new one.  Keeping positive is all we can do.

Lorraine x

Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hello all Eribulin ladies! I’ve just had day 8 cycle 9 and the second CT scan after cycle 7 showed stable. I wanted more than this but the light of Vicky’s news gave me perspective. So sorry to hear about this progression and hope more treatment options are given soon.

 

Overall I’m tolerating Eribulin well, (I think) no neuropathy at least.  Riversidedawn,  I do sometimes get tired so our dog now has a walk with a good dog walker every morning! Then I take him for his afternoon walk and adapt the length as required, mostly I can do the full walk around our local park which takes about an hour. I no longer work (I’m an architect) and keeping my brain busy with projects is now my new normal.

 

But I do have G-CSF injections now  and for the first time before day 1 cycle 9 my neutrophils were too low at 0.9 and it was delayed two days when a further blood test showed the neuts were back to 3.0! Then the blood test at day 8 chemo showed the neuts had shot up to 10.6 and I realised later that the day 8 dose was then reduced by 20% but I was still given G-CSF injections! ?

 

Until I next see an onc ( I can no longer say my onc as I’ve seen five different ones in my last five appointments,) I won’t know why! I googled it (stupid I know!) and high neuts show a source of infection supposedly but if so I don’t know where it is! I have no symptoms!  I have felt fine throughout so as always it is as if I feel one thing and my body shows something else!

 

I do find doing a weekly pilates class gives me a sense of normality! I’ve had SBC over 5 years now (straight to SBC) I had EC chemo first Vicky. (It always surprises me that there is so much variation in treatment.) I then had tamoxifen which didn’t work for very long, then Docetaxel,  then letrozole, then Capecitabine so this is my 4th chemo in 5 years. My liver mets are quite large but they have not in themselves ever caused me pain or problems. My bone mets are small and have always been stable.

 

Two years ago when just about to start Capecitabine I finally bought myself my first horse! I’ve ridden from aged 12 but I never was in the position to own one, best thing I’ve done for ages! I keep him at long distance livery though at a specialist yard as he is a Lusitano stallion. Now when I’m with him I’m on the regular breaks from treatment  and far far away from hospitals etc! That works for me! My husband is very tolerant and knows I have to ride to keep sane!

 

My hair started growing back after cycle 5 and is now obvious and curly (I had wavy hair and curls now just looks wrong), unfortunately there is no sign of eyelash replacement growth yet!

 

Good luck with treatment all Eribulin ladies! Sianx

 

 

 

 

 

 

 

Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Riversidedawn

 

I've gone onto 3 sessions of EC (part of FEC) and then onto hormones again. The hormone part of E & E treatment. My oncologist thinks that as I'm not responding to chemo then I might respond better to hormones.  I had 18 months of being stable on Anastrozol when first diagnosed so fingers crossed this will work. My liver mets are bad so the chemo is to try and hit them hard and try and reduce them. 

Very disappointed I didn't get better results with the Eribulin after the first good scan. Very frustrating that some ladies get years out of treatments and I'm struggling to get 3 months!!

What is your platinum chemo? I ask every time about new treatments I have read about but knocked back each time as they are all first line treatments.  My only options now are clinical trials and there aren't any currently in my area.  

Fingers crossed for good scan results,  please keep us updated.

I've just retired on ill health at 47 and gone onto PIP. Not how I expected life to turn out!

Vicky

 

 

 

Community Champion

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi ladies, I'm now on cycle 3 of eribulin and find I'm tolerating it as well as can be expected.

I'm having CT scan tomorrow with onc appointment booked for 10th July, chemo day 8 is Friday so I'm presuming if they report it quickly and it's bad news, they should tell me as it would be pointless having treatment?

Vicky, so sorry to hear you have had progression after a promising start. I feel like I'm going downhill rapidly since October when bone mets became active. This is my third treatment since secondary diagnosis - palbociclib/letrozole, taxol and now eribulin. Onc said one of the platinum chemos is my only option next. I do hope your next treatment is more successful, what are you on now?

Lorraine, your last post was 2 weeks ago saying you were due a scan in a couple of weeks - any news? 

London1, are you still on eribulin? How are you getting on?

I've lost more hair on this than on other treatment, very very thin. Started wearing scarves and got a new (old) wig last week which I wore out for my daughter's birthday.

My main SE is extreme fatigue, I have to seriously pace myself and can only comfortably manage one thing a day - yoga, walk the dogs, take kids to social or extra curricular activities. Feel very lazy but if I do too much I just spend then next day or 2 in bed.

I have also got back in the saddle, albeit very tentatively with a leader, instructor and someone walking beside me. Extra caution is because I have a new stoma as a result of my abdominal mets so I'm at risk of hernia, also the fatigue and low blood pressure can come from nowhere, so taking it very slowly. 

I'm feeling older than my 52 years and have just taken ill health retirement, still awaiting paperwork to complete this long drawn out process. 

Scan result update to follow when I get it. Fingers crossed for a of us.

Xx