Chemo Buddy Needed - Anyone Currently on Eribulin?

[withasmile]

Moijan, hope you have better luck with car parking today, you really don't need an extra hassle on chemo days.

Tms reducing slowly and steadily, so feel quite positive about it.

Have dreadful indigestion today right across my back; it always seems to happen on week 2 so drinking gallons of peppermint tea!

Hope your concrete head clears

xx

[Moijan]

Thank you, Withasmile. Slept badly and have woken up with a head full of concrete!

by the way, how have your tms been doing, cant recall if you mentioned them?

its still pretty cold outside...took about 10 minutes to defreeze my car windows yesterday....lots of thick frost

and then the car park was crammed full...found a space at an end of a row.....when I came out there was a big car parked about a foot obstructing me...took me ages to reverse round that.....and just as I had nearly done that..the driver appeared.,,😡👿😾😣 

well, needing to psych myself up now xxxx

Moijan💚💚💚

[withasmile]

Hope all goes well with your treatment today Moijan.

Had my day 8 on Monday, so far so good.

I've made some hard decisions re future work changes (I'm self employed) which is both a relief and sad, but I realised I won't have the energy to deal with big stuff so need to scale down.

I've got week 3 next week then 2 more cycles before the next scan. Sooo looking forward to the spring!

Time for a cuppa now

xx

[Moijan]

no worriesxx. At least you know what week you are!

hugs

Moijanxxx💚💚💚

[withasmile]

ooh I've lost track of time! xxx

[Moijan]

No...week 3!
Have been a little over sensitive, but otherwise ok. If you need a bit of Snow, plenty here....I can shoo all of it over.... any novelty has now worn off xxx

[withasmile]

hi Moijan,

was yesterday Day 1?for you? I hope it went well.

(No idea why I've gone to italics!)

I've been experimenting with what I'm eating in an effort to keep moods more balanced and as yet I haven't had a downward swing so hopefully it will work.

No snow here but a really sharp frost and bitter wind.

xx

[Moijan]

Sure theremust be some new ladies on Eribulin?

[Moijan]

Hi there Withasmile, 

your system is very different from mine...how is it they wont give it to you on the drugs fund? The other thing is, we were told that NICE had agreed to roll it out for general use anyway, last November? Surely one way or another you wouldnt have to use your insurance...what a shame for youxxx

good luck this wekk, my hips and legs ache..but not sure what the cause is!

love and hugs

Moijan💚💚💚

[Moijan]

Hi there Marnster,

feel a bit envious of you in Oz! Have relatives in Manley..spent a long time in oz in my youth.

sorry tho, that you are having to change drugs...very strange thet Erib works so very well for me, but havent yet heard any other astonishing results....feeling a little guilty...tho have had my own failures on Cape and Vinorelbine etc.

hopefully your move will be void of too much stress...will check in from time to time to see how you are going..keep in touch wont you?

love and hugs, Moijanxx

[withasmile]

hi Marnster,

everything sounds pretty hectic for you at the moment, enjoy your week off and relax.

Hoping that you are accepted for the the Keytruda trial and it proves successful

xx

[withasmile]

hiya Moijan

yes I'm in the UK...I think its more a case of paying for the insurance and they pay for the drug, rather than actually having to pay to have Eribulin. I did check and I can have breaks.

A trip to Oz would be fantastic!

Speak soon xx

[Marnster]

Hi all

Sorry I've been a bit absent. I'm finishing up work at the end of this week so have been madly trying to get everything sorted for that. Then I'm moving in a few weeks so there is lots to do at home too.

I am in Australia and Eribulin is on the Pharmaceutical Benefits Scheme here so there haven't been any issues with me accessing it. I started round four last week and so I have Day 8 on Wednesday. As next week will be my week off, I'm going to go away for a few days to relax and have a bit of a break before I come back and get stuck into the mad packing/cleaning cycle of moving out.

I think I will have one more cycle of Eribulin and then hopefully I will move and start with a new doctor on a clinical trial. They are looking at my eligibility for it. If I'm successful, it is a trial with Keytruda for people with metastatic triple negative breast cancer. It has shown success with other cancers like melanoma and lung. Let's hope it can be as successful with breast cancer!

Hope everyone is travelling ok.

[Moijan]

Hi Withasmile,

i do neupogen on days 3,4,5 and 11.12.13.

are you in the Uk? i ask because you were aying you have to pay( using your insurance) im on the drugs fund...compassionate grounds...by the drug company.  But im not allowed a break..if I missed more than six weeks, i lose it for ever apparently...not sure why...but thats what the onc says...I might have one cycle off to visit oz, tho. Not too sure...seems to be working...do I want to risk it becoming resistant yo the erib?

Moijanxx💚💚💚

[withasmile]

yes I would've thought there would be more people on it by now, maybe they're all over on the Macmillan forum! 😉

How often do you do your neupogen injection?

I'm starting cycle 4 tomorrow, I've got three cycles to do this time and then onco says they'll scan and I can have a short break. It feels like a way of life now.

I hope you have a good week off and don't get too down

xx

[Moijan]

Yes, this is my week off!  Havejust done myneupogen injection 1.

havent so far had any s/e, just a little tendr where the canula went in.

goodluck with this cycle, isit cycle 3 and any side effects?

hoping for brilliant results for you.....it feels strange that there are so few of us.....would have thought now there would be more.

Moijanxx💚💚💚

[withasmile]

all fine here Moijan, ready to start Day 1 chemo tomorrow, are you starting your rest week 3 now?

xx

[Moijan]

Hi Ladies, hope you are ok?Moijanxxx💚💚💚

[Moijan]

Hi Withasmile...are you not in the UK, then?

i was given it under the drugs fund, but now I think Nice. Have released it for general use?

or thats what was in the papers!

i know its expensive, tho. What a shame you are needing to pay.

love and hugsxx moijanxx💚💚💚

[Moijan]

Oh Marnster, am so sorry.....but as you say it might have slowed things down.

Goodness onows why it works for some,but not others....whch chemo do you thnk you are headed for?

also, were you given it under the drugs fund? Or on general release?

love and hugsxxx will be looking out to see how things go for youxx

Moijan💚💚💚

[withasmile]

mornin' Moijan and Marnster

it looks like we'll all be buddy-ing along for a bit longer then, thanks in advance- its nice to have such supportive companions.

Marnster I'm sorry to hear your results. What will the clinical trial entail?

Yes, I'm planning some little treats for my chemo months; I don't think funds will run to a mini break but there's def going to be some treats!

Moijan, I've got a tiny weeny health insurance policy from the year dot when I first became self employed. Miraculously it covers chemotherapy so I'm able to get Eribulin. Unfortunately the premiums have now become quite high but while we can still manage to pay them I can continue with it.

Its a lovely morning here, bright crisp and sunny, hope its the same with you both.

Speak soon, big hugs

xx

[Marnster]

Hi again!

Got my results from my CT scan and unfortunately my tumours kept growing over the three rounds I was on Eribulin. They are still small, but the lung mets, lymph nodes and chest wall tumour all got a little bit bigger. And some new lesions have appeared in my left lung. 

My next step is to go on a clinical trial but it looks like I won't be able to start until February. So I'm going to do a couple more rounds of Eribulin. While it hasn't been successful in reducing the tumours, it may have helped slow the growth. And as I haven't had any major adverse effects from it, it won't hurt to continue for a few more weeks. 

Not the news I'd hoped for, but also not too surprised by it. 

Cheers

[Moijan]

Hi Marnster,

hope your results were good?

love and hugsxxx

Moijan💚💚💚

[Moijan]

Hi Withasmile, 

Am on Day 8 0f cycle 10 tomorrow...well today now......

Am so pleased that you are getting good results......this drug has been working wonders for me and id hoped to go onto a tablet intead, but my onc has said they want to keep me on it until it stops working!

so it looks like I will be tethered to a drip for quite a while. Mine has been under the drug fund and is still, I suspect;  because He said that only up to six weeks maximum break would be allowed..... Or I would lose it.

Are you Withasmile, and Marnster.....are you too,  on it under the drugs fund? Or under general release?

best wishes anyway...am glad to have your companyxx

Moijanxx 💚💚💚

[Marnster]

Hi all

i get my test results in a few hours so I will let you know how I go!

withasmile, that is great news that the tumours have shrunk. It is working! I can appreciate your disappointment that you have to continue chemo, but I don't think we have any other options at this stage. Yes, it means you are tied to these regular appointments but at least we get a break on Day 15. If you're feeling well enough, then a mini break is possible between rounds. 

Maybe you could try to plan some so you have something to look forward to between your upcoming rounds?

I'll let you guys know later on how I get on today and if you get to keep me as an Erubilin buddy. 

[withasmile]

thanks Moijan, I'm feeling quite upbeat now its actually here!

Speak later xx

[Moijan]

Hi Withasmile,

Today is results day then...very best of luck, am waiting o hear how you get on xxx

Hi everyone else,

are you all ok? The thread has one rather quiet....hopefully that means all are doing ok? 

Hugs, Moijanxxx💚💚💚

[withasmile]

hi Moijan

so happy about your scan results, it def shows the Eribulin must be working.

I know exactly what you mean about being tied to the hospital; it really does become your life doesn't it however much you carry-on as 'normal'?

I get my results on Wednesday and am getting a bit more anxious each day. I so much want to come off chemo but I've had all of the anti-oestrogen tablets previously and none of them have worked for me as yet, so it'll be interesting to see what the onc comes up with.

Wishing you a very happy new year, hoping that things get easier and much much better

xx

[Moijan]

Hi Marnster, Withasmile the other erib ladies and Downbutnotout,

hope everyone is ok?

just thought id feed back about my mri, everything has shrunk...but they want me to stay on it!.

i do hope you all have similar good news....I remain fairly symptom free,but a bit tethered to the hospital.....have been on it for six months now.  I was hoping for a change to an anti oestrogen tablet...to free me up a little, will be waiting to see what your oncs decide if Erib sorts your mets outxxx

i still get a bit ratty in the third week and my fingers are slightly sore but nothing to see...

keep in touchxxx

HAPPY NEW YEAR to everyone🎈🎈🎈🎉💥

Moijan💚💚💚

[Moijan]

Hi Marnster Yes thank you...same goes for you?

it will be good to update with results etc later this weekxx

Moijan💚💚💚

[Marnster]

Hope you've all had a very happy Christmas with family and friends.

[Moijan]

Hi Marnster and Withasmile,

Marnster, sounds very much like a really good plan or two.  I find friends better than family for support, really.

also sounds like you have your life in order...which must feel really good!.thank you for coming back to let us know how you arexx

Withasmile, yes am hoping for a really good mri result myself, and will be able to report back on that just after christmas. Would be interesting to see what the tms are doing too.  Notsure what the oncs will do if this turns out to be a success?  Iguess then there will be choices to be made?

hope you are both well today? Im just into week three and can feel the stirrings of anger over little things, but trying to resist thatxx

Moijan💚💚💚

[withasmile]

hi Moijan,

miraculous MRI results really would be amazing!

I'm determined to concentrate on having a fab Christmas and try not to worry what next year will bring.

Speak soon

xx

[Marnster]

Hi everyone

I started my third round on Monday and it seems with each round, the side effects are lessening. So far, I've been really good with this one. Haven't even really lost my appetite with this one.

Have also been making some big decisions about the future and work, etc. Have decided to stop working for a while and concentrate on my treatments and my health. I also want to travel as much as I can between treatments. So I'm pleased that I've been feeling so well lately!

I'm also moving back to be closer to friends and family as I currently don't have a huge support network around me. It will be nice to see friends and family more often.

So it has been very busy trying to get all of my ducks in a row! Four more weeks of work and then probably six weeks until I move. Lots more to organise between now and then.

Hope everyone is doing ok.

[Moijan]

Marnster, how are you doing?

do let us. Knowxxx

Mojanxx💚💚💚

[Moijan]

Hi Withasmile..

Sorry for late reply, just hot off the cannula now myself.

yes, im with you on all of that and I have an MRI on 21st myself!

i am on Filgrastim/Neupogen, which seems to hoik  up my white cells....some cycles I feel worse than others

,but I notice my cells still go down during The  week off.

So cycle 10 starts after Christmas.......unless the MRI results were to be a miracle!

must try not t get stressed as that seems to affect the cancer...not sure why the italics...not my doing.

lets keep in tochxxx

Moijanxxx💚💚💚

[withasmile]

hi Moijan,

had my Day 8 on Monday which is my last chemo this year. CT next Tuesday and onc apt 4th Jan.

I'm desperate to preempt the downness. I can feel it starting to creep up now, I know my husband finds it really hard- I either go totally quiet or snap at him for no reason I feel so angry. The hospital nurse said it's when the white cells hit their lowest point and try to rest more.

I do try to keep upbeat and find the brightside, but a life of chemo is crap isn't it!?

Wishing you luck, and apologies for being grumpy

xx

[Moijan]

Hi Withasmile...Thursday went well, thank youxx

 have been feelng not too bad really..hoping to feel good after the day 8!   Would lke to preemptany down ness.,

how are you?

Moijanxx

[withasmile]

good luck today Moijan xx

[Moijan]

Hi Everyone!

Withasmile, 

thank you for. Sharing all. That....my eyes get dry, but was thinking its the ipad...really must try and not do loads of stuff just before bed!

the downness..im more sensitive about little things, and much more critical of my partner, the slightest thing can make me angry....I think this drug must get past the. Brain barrier....

my appetite, rarely feel really hungry...but this last cycle am feeling much more healthy than for a long time.

how are your tumour markers doing? Which cycle are you on?

Hope everyone else is doing wellxxx

Moijan💚💚💚

[withasmile]

hi Moijan

yes, I also feel quite down in week three. 

I've got a pattern to the weeks now- Chemo Monday completely zonked. Tuesday and Weds I'm buzzing around like the Duracell Bunny and can't sleep or rest, not particularly hungry. Thursday Friday Sat Sun appetite returned, more normal, just very tired.

The second week is the same.

On week three I get styes in my eyes, mouth ulcers, feel generally run down and really have to push to get above the lethargy and low mood.

Even so its the most tolerable chemo I've had so far, but I do think my bod goes into meltdown when it hits- like it remembers the previous fiascos and goes straight into flight mode.

My hair doesn't know what to do! It fell out after being hospitalized from the Cape reaction and its now got just past peach-fuzz stage. I think the Erib is slowing growth dramatically but whats there is staying put! I try not to mind, but I do. I liked my hair.

Hope onc day is productive and cycle 9 goes well for you. Will you get time off over Christmas?

xx

ps my eyesight is also worse

[Moijan]

Hi Withasmile,

yes, am certain it is the Erib. Am coming/ pretty out of it now......seems to be week three, do you find that?

i think it must be cycle 9 im starting.....its onc day tomorrow and chemo on thurs, day 1

saw my gp today just to get a prescription and have a catch up...nce lady. But was reflecting on how well I am feelng..actually wihasmioe, im generally ealthier now than for past 18/months..,. Have moremotivation to sort myself out...house cluttered, correspondence o sort, my thnking also seems more clear, hope that continues!

my eyesight is gong down the tubes a bt...shortsighted.think its the ipad...they will say soon, 'well res shows all these screens affect the retina'. Trouble is...its big business.....so these things are hidden away.

ah well, spare room to clear, bedroom to tidy, neic to pick up etc etc

hugs,

Moijan

[withasmile]

morning Moijan,

sorry you hit a low, I had that happen time-before-last. It's a bit difficult to climb out of it sometimes but we plod on eh? Someone (I don't think I'll call her a friend) remarked 'you're still alive so why would you be low?' If I'd had the energy I honestly think I'd have punched her on the nose!!

Bruce (horse) is recovering well. He's 23 so I know there may be trouble ahead but I'm not thinking that far...I don't really do future plans anymore!

Chemo yesterday was fine. The bloods were delayed and everyone was apologising for the wait so I found a bed, snuggled in with my book and had a good rest and Zzzzs after the hectic week!

Just got Day 8 to go and then Christmas off with a scan and review early Jan.

Hoping all is well on Thursday and the following days. How many cycles is this?

xx

[Moijan]

Hi Withasmile

so sorry about the catxx they are family arent they? I was very sad to have mine put down..she had seen me though my primary cancer and it reslly upset me when I had to make that decision. i hope your horse is recoveringxx

this week is week 1 for me and so I have my first dose this Thursday, I was a bit fed up after my last dose..lasted a few days....I think it is like that with a few chemos...hence the week off...thank goodness.

how are you feeling now?

Moijanxx💚💚💚

always sad to lose afriend like that...pancreatic cancer, as you probably know is apparently much harder to treat, though they are making progressxx

[withasmile]

My finger healed in time and antib's stopped any infection in its tracks, so chemo went ahead today. . .blood results were a bit delayed so I had a little nap and then an extra cuppa and it was soon time to come home.

A bit of an emotional week last week; a friend died of pancreatic cancer, our dear old cat had to be put to sleep and then my horse was very poorly over the w.e and I thought I was going to lose him. Weird how things all pile up together.

You must be starting your recovery week now Moijan? Hope you have a happier week than me!

xx

[Moijan]

Ouch! Cats have such dirty mouths dont they? I do love cats, but i know exactly what you mean..they dont like meds much, do they?

hope your finger settles down soon, you poor thing. You must be quite worried...but the antibios should help alot....havent managed any of my xmas shopping! Went out with a friend but the shops were full of very expensive things!

take care...Moijanx

[withasmile]

thanks for that Moijan, I'll talk to the onc next week and see if they can at least cut it down a bit.

Had a mishap today- I had to give our old cat a tablet for her heart and managed to get bitten in the process. Doh. Very painful and very large throbbing finger, quick trip to the docs, and I've gotta take FIVE antibiotiocs a day for the next week- looks like I'm going to have a fun-filled 'rest week' eh?

Hope you got your Christmas shopping done xx

[Moijan]

Hi all, yes day 8 went really well, got vein first stab...always helps! They were very busy. Had a new nurse so almost was given the antisickness drug by mistake! But i asked what was in the syringe and then she checked again and saw it had bern discontinued. 

Session was over wuickly and went off to do some xmas shopping! Good luck with your treatmentsxx

moijan💚💚💚

[Moijan]

Hi Withasmile,

my guess is the 'steroids' are to stop you being sick? They do sometimes have that effect and then you feel wiped out after...

Were you sick before( on your first cycle?) i havent been given steroids at all.

At  my hospital they were giving me/us an antiemetic( antisickness drug* ) i/v just before he Eribulin. And sending us home with three days worth of domperidone* to take if required. 

I found the antisickness drug made me a bit panicky on the drip and so we stopped it and I dont have anything now at all....and no sickness...why dont you chat to your onc ? He might decide to change to antisickness drugs.....as a trial? Have a think about it, see how you feel....they will want you to feel comfortable on the chemo and if you are getting very tired, im sure they would review the meds if you ask himxx

Oh, and tiredness can set in as the cells go down, red cells as well as white...as red cells carry the oxygen, a drop makes us tired. I am having filgrastim which boosts the cells, so dont get as tiredXx

best of luck. With that xx

Moijan 💚💚💚