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Chemo Buddy Needed - Anyone Currently on Eribulin?

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Well, I'm not thinking of having it..my oh had it last week and he's had a really sore arm since.

Mx

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Kay,

I’ve had the flu jab. I had it on day 4 of cycle 5. I felt ok for a few days, then on day 12 my temp went above 37.5 so had to go to A & E. All was checked out as ok, no infection. Temperature was up and down for a couple of days but then I was fine. 

I am now on cycle 6 and not doing too bad.

Hope you are ok,

Liz x

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Moijan  and everyone 

I was wondering if any of you have had or going to have the flu jab I have been told to go towards the end of my week off the eribulin which is this coming weekend I am unsure as to have it or not only had one once before well before my cancer returned and I was ill though they say it does not give you any symptoms the lady cross the road from me had hers and has been ill since with upper respiratory and bad headaches lost voice etc. 

So was just wondering what you all thought 

 

kay

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Bezza

 

yes, Eribulin has been very helpful to me, my onc observed that although it has now lost its effectiveness, I have benefitted from an extra year of progression free survival. I had very few side effects, I lost my hair which is returning, though rather thin just now. I had some peripheral neuropathy, which has largely recovered since I stopped the drug. I always felt fine to drive myself to and from my chemo appointments in the car.

 

You might find it helpful to scroll down to the beginning of this thread(it is only about a year old at present) as the early posts diaried mine and other's early experience on the drug. At that time there were very few users on Eribulin and I felt I was flying blind, a bit scared about what side effects might happen.  

 

Anyway, very good luck to you and hopefully you will have a similar benefit.

 

hi Bousy, yes, sadly all of us metastatic ladies have, as you put it, incurable cancer....this drug isn't currently used with primary ladies to my knowledge, but it is a very good drug, so hopefully you will get some mileage from it before needing a change.

 

best wishes,

Moijan💚💚💚

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Bezza,

Yes I got results of scan after 4 cycles and it is working. Tumour on liver gone from 4cm to 1 cm. I get quite fatigued. Now on cycle 6. Having another scan after cycle 8. If it’s still reducing tumours will stay on it, if only keeping it stable I will come off. My  cancer is a malignant cancer. I was on faslodex for 4 months then it didn’t work. Hope there is something else to try.

Hope you are ok,

Liz x

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Moijan,

 

Hope your new plan works well for you, I am on eribulin going into 6th cycle, side effects bin kind to me apart from fatigue, really scared bout results as my oncologist(old one)said to me as i was goin thru his office door after her told me about this chemo, that my cancer was aggresive and said he was sorry,so he didnt give me alot of hope.  I now have a female oncologist with completely different attitude, the only thing when she is on hol i have to have the old one, i have made it clear to her i want her to deliver my results good or bad,she fully understands me.  I hope they keep me on this chemo as it works on many levels, did you have many side effects from it.  The one you are going on i was on as a clinical trial, that only worked for me for cple months,is it an injection, that wasnt to bad at all,just can be abit long winded, as they have to take it out fridge and leave for hour,so abit of waiting around. Good luck with it,hope it all goes well,lots love,bezza111(carol)xx

 

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hreallyi Bousy,

 

Have you had your scan, sorry alittle late in asking u that was in august, hope it all went well.

I am having mine in cple weeks, really scared, i have had really bad fatigue,now they are say my magnesium is really bad. regards bezza111(carol)x

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Oh yes, tho I'm not sure if looking up side effects is a good idea......

 

will def keep in touch.M🍀

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Moijan

good luck with your new treatment plan hope it all goes well for you, keep us informed formed to how you are doing on it have you looked it up as to side effects etc and if anyone has  been on it for a good length of time

 

all the best 

 

kay

 

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Yes, you all feel like family on this thread...I remember how very alone I felt when I started it.

I too am changing buses.....am boarding the fulvestrant one soon.

 

As you know Eribulin killed my liver tumours at one point....but now they've resurged....very good luck to you all. I was on it for 15 months too and my hair started to come back at around 10-12 months. Very few other side effects and only about 20 mins in the chair on a good day!

 

moijan💁

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Kimmi
I was on Eribulin for 15 months although I don’t think it was working fully for the last three months . I’ve just started Xeloda/cape so I’m glad to hear there’s a posibility of it lasting for so long!
Great to have been part of the thread but I guess I’ll ‘meet’ some of you on other threads .
Good luck to everyone and keep going!
Big Hugs 🤗 🐝
Janie xx
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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi, I was on xeloda for two and a half years, did suffer bad with my feet and hands.  Changed to  Eribulin in June, have been wearing cold cap have kept my hair has thinned but only slightly but am lucky that I have thick hair to start. Am on my 6 cycle, had scan and all stable, tumour marker has dropped down to 100.  Was wondering how long I would be on this drug would love to hear from anyone. Thank you Kim 

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Nicky,

 

Glad it’s working for you. My scan after 4 cycles showed it’s working for me too. Reduced tumour in liver from 4 cm to 1 cm. Lung mets healing and bones. Just had day 8 of cycle 5. I find I am fatigued quite a bit.

Hugs to everyone.

Liz x

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Nicky

Really pleased the treatment has worked. It must be such a relief.

Have a good weekend

Linda

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi ladies

Reporting in with some more good news regarding scan results. Just got my results yesterday and I now only have one liver lesion (having started off on Eribulin with several) and all bones stable and healing. Very pleased especially as the liver lesion is continuing to shrink. I have completed 8 cycles of Eribulin and niw wait to see what I have next.  It could be that I will continue on it or switch to a hormonal treatment, Faslodex (with or without other inhibitors, depending if I get accepted for a trial). Hope to have a second opinion in a week or so and then that will let me know which way we go. Oncologist is very pleased with the resukts, as am I.

On the note about neuropathy I have developed this over the last few cycles, not really bad, but enough for it to be noticeable to me in my fingers, a slight numbness like you get if your fingers are really cold.

Good luck with the results of your MRI scan, Moijan, I know what it's like when you suddenly have a different type of scan, or one to a different area, as what you don't see you don't know/worry about.  I had a head scan included in my latest CT for the first time in 4 years and that;'s what was worrying me, if it hadn't been scanned I wouldnt have been worrying so much about the results.

Good luck for everyone else on this treatment, hope the SEs arent getting to you.

Nicky x

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Moijan

sorry to hear you have been in hospital I hope you are feeling better now you are home 

are you waiting for another ct result? 

I have been full of cold now for 2 weeks and sneeze I have known nothing 

Ike it never sneezed as much as this in my life must be about 20 a minute ended up in those Tena lady pants

also been decorating so not sure if that aggravated my nose with not having any hairs in it

itchy throats really dry skin itchy swollen lips one thing fir sure will never have fillers in my lip area looked like duck a right site

my hairs growing back it is quite thick now on one side top of head could do with being a bit thicker then would not wear my wig how is yours coming along?

as any one heard from withasmile if so how is she doing?

i have just finished cycle 11 so week off now

 

hope everyone else is doing ok 

 

kay

 

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Thank you Bon
Mx
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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Moijan
Hope your scan results are good. Hugs while you wait, Bon xx

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Kay, thank you yes.

The neuropathy concerns me too - not sure about wether will stay on Eribulin but will depend on my MRI results - having it next week.

Best wishes
Mx
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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Briliant news Liz, so pleased that it's working well for you, long may it continue.

 

Hope you are feeling better now Moijan after your hospital stay - you're staying on eribulin? Are you getting more neuropathy these days? I am on Day 8 of cycle 11 tomorrow and the neuropathy is the side effect which bothers me the most - left index finger and left toes in particular.

 

Sending big ((((((((((cyber))))))))))) hugs and hope all Spongebobbers are managing ok.

Love Helen x

 

 

 

 

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Liz,

 

Thats such wonderful news, I bet you are feeling pretty good at the minute after those results.

 

Hopefully you are going to allow yourself a celebration of some kind.

 

Big hug

Maria x

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi everyone,

 

I had a CT scan last week and have just been to see oncologist for results. For once it’s good news! The tumour on my liver has shrunk from 4 cm to 1 cm, tumours on lungs nearly gone and bones healing. This is first good news I’ve had for over a year. Hope it works for a long time. 

 

Hope everyone else is ok.

 

Hugs,

Liz xx

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Yes Carolyn

 

must say I'm surprised that Eribulin was offered before paclitaxel - seems a little back to front?

hopefully it will help tho

moijan

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Janieb

Enjoy your absailing then !! Ha ha ..the only thing to be a little bit careful with is hair thinning ..avoid harsh hair colouring/ hair straightners if u notice the hairbrush looking a bit clogged up !!
Under going through treatment ...hormone therapy ..you will see oodles of threads on letrozole which might help ..but most ladies don't have much problem especially the ones that have done the big guns chemo first !!!!!
Xxx
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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

That's good news , something to look forward to if it works . I have continued to do most of those activities anyway so it looks like I'll have to take up abseiling!
Xx🤗
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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hello janieb

Just reading your post ...letrozole is a hormone pills taken daily ..it will be an absolute doddle compared to chemo you have been having.
You can do everything ....abseiling, swimming , holidays etc ...
Hugs xxx
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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Still on Eribulin for the time being but it's not working that well. Next option is Letrozole . Anyone know how does that compare to Eribulin with side effects . I'm assuming it won't be so many trips to Onc - I might be able to go abroad more easily ! Hope you are all doing ok 😘
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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi all.

Just to keep you all up to date, I'm not now going to be having Eribulin! My Onc got a bit carried away & didn't remember that its not available for 2nd line treatment only 3rd & onward. Now have to have Paclitaxel instead but as they can't give it to me at my local hospital I have to drive 1 hour to a cancer center 30 miles away twice a week! Not a happy bunny 😞

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Good luck Janie
Am booked for day 1 later today!
Let me know your future plans
Mx
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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Moijan , that's a shame you had to go in to hospital, hope you are feeling better now . Just off for my chemo today, it takes all day waiting for clinic appointment and then a wait for pharmacy to deliver chemo. then I'm in and out for the chemo in under an hour! Not sure if I'm carrying on with Eribulin , will find out today . Janie xxx
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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Janie, like you I've been on Eribulin for over a year and few side effects - a bit of peripheral neuropathy, no sickness. It's been a dream really, as I didn't bother with cold cap I'm usually in and out within 25 mins on a good vein day!
I have just had a week in hospital, I think I got a bit run down as wasn't sleeping-got a urine infection AND cellulitis and ended up on the 'sepsis' protocol. Was so glad to get home again!

Think I'm starting another cycle later this week- so fingers crossed🤞🏻🤞🏻
Best wishes

moijan💚💚💚
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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Thanks janieb & nicky.

Glad to hear that you've both not experienced bad side effects. Due to start treatment on th 29th with picc line being put in on 26th. Haven't been given the option of a portacath, nicky but if the upkeep of a picc line is causing me issues I'll defo ask. I'm hoping that I don't lose my hair but I'm not precious about it, lost it all on primary treatment so know what looks good on me to cover my head. My hair is currently just above shoulder length, although quite fine. Just hope it isn't patchy! Found that I suffered quite badly with less common side effects on primary treatment (loss of finger & toe nails & awful taste changes) so hoping that I don't suffer too much this time. Hope you keep well on whatever treatments you have next.

Angela x

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Angela and welcome to the eribulin thread. There's lots of advice on here if you have the time to read back over the previous posts but I can let you how I have found it over the past 7-8 cycles.

My hair thinned dramatically between dose 1 and 2 (days 1 and 😎 despite using the cold cap. However it hasn't fallen out any more since then and has grown in length and thickness, albeit slowly, since then. My eyelashes and eyebrows have completely gone, after cycle 6, which I hate more than no/little hair as you look so washed out. False eyelashes and avoid eyebrow pencil are my new friends! I started off on steroids as I was prescribed them but took a smaller dose gradually and stopped them altogether after cycle 2, same with anti sickness. I've not had any nausea, or only mild, until this last dose this week but I'm sure it's psychosomatic rather than anything to do with the chemo. I've had a bit of mild peripheral neuropathy but it's not come to much, just a mild lack of feeling in some of my finger tips. I have suffered with a low wbc (and neuts) so have had the GCSF injections - currently having 3 on days 12,13,14 of the cycle, or thereabouts as the nadir (low blood cell point is day 15). Other than that not especially fatigued, just a little bit the day after the chemo, but not every cycle. Hope that helps but there are other ladies on here who have been on this for much longer than me who can add their experiences. By the way have you considered a portacath instead of a PICC line? I have had one fitted for 3-4 years now as I was previously on Docetaxel and it makes such a difference to hunt-the-vein but also has none of the extra care needed for a PICC line where it needs to be flushed through every week. The power ports also allow the contrast dye used in CT scans to be injected, as long as you have the right needle used, and you can have bloods taken from them - but I guess that's similar to a PICC line.

Good luck with eribulin, I'm coming off it after the end of this cycle as my onc feels I should come off chemo's for a while and go onto a hormonal to help my bone marrow, in case it gets compromised,  as I have been on various treatments for mets for over 9 years now - not quite a gruesome as it sounds as much of that has been stable periods on hormonal treatments.

Nicky x

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Angela and all , sorry I haven't been replying lately but I have been galavanting around the country catching up with friends and generally having a jolly good time! I had my scan results and it showed some more peritoneal fluid, not a lot, but enough to make me feel uncomfortable when I eat😱Onc was going to think about next treatment but he's happy to leave it for now and see as apart from fluid there is no evidence of progression. I did discover that I am still er positive ( just to estrogen ) so it could be a hormone type or Cape next Welcome Angela - I have been on Eribulin for over a year with virtually no side effects! Sometimes I'm less fit going up big hills and stairs , i live in Scotland! I never took the post chemo pills for sickness as I forgot and they said don't bother if you don't feel sick. Glad to hear cape was good for you for a year being my probable next option . How is your hair ? Mine is thin and very short, I'm told I look like Annie Lennox !
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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hello everyone, I'm posting in this thread as have been on Cape for 1 year & at my onc appt today have been told it has stopped being effective & my bone marrow isn't tolerating it well, so have been put onto Eribulin. Just wanted to find out from all you lovelies what side effects you got & the best way to deal with them? I'm due to start treatment in 2 weeks, I think, & will have to have a picc line put in due to awful veins! 

Thanks in advance

Angela xx

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Thank you Lori. There definitely will be more adventures. I'm not going to let it get in the way of doing the things I want to do. As soon as I get these clots in my lungs under control so I no longer feel breathless all the time, I'll be planning my next holiday. It's important to have something to look forward to. I'm back to weekly chemo now but that doesn't mean I can't go away for a few days between weekly treatments. I'll make it work. 

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Marnster! Wow! I just read your blog about your adventure to Pumpkin Island! What an amazing experience! I am so glad you were able to go despite your treatment schedule!! I'm sorry your vision wasn't what you hoped it would be! I have to say, it honestly fills my heart with joy knowing you were able to choose you, and not this stupid disease, and live your life on your terms!! So happy for you! I hope you are feeling well! I look forward to reading about your next adventure! xx Lori

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Kay!
Thanks for your response. Unfortunately, I don't have my consultation until September 22nd. The mapping will be 2 weeks later then the actual procedure 2 weeks after that, so...it won't be until the end of October. Ugh. In the mean time, my onc is taking me off the Eribulin and putting me on Ibrance. I'm pretty nervous about both, to be honest. Thanks for your kind words!! Hope you are feeling well!

xx
Lori
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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Marnster 

i hope you are here next year to go as well I hope your double vision is settling down 

you are really an inspiration with your get up and go I admire you for your mind set and attitude to this horrible disease and I truly hope you carry on fighting it for a few more years

have they looked into immunotherapy for you or is it available  for the likes of us I know with lung they have  had success and melanoma cancers 

 

keep that spirit flying 

 

kay

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Moijan

glad to see your back not very nice when your not well but always seems worse when on chemo 

 

hope everyone else else doing ok with treatment 

 

kay

 

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi moijan

glad to see you back not very nice when your ill at the best of times but seems worse when on chemo 

 

kay

hope every ine doing ok with treatment 

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Ladies,

 

had day 8 cancelled as had a virus and was quite unwell...better now. Hope you are all managing well?

 

take extra care of yourselves.

 

Much Love, Moijan💚💚💚

 

🐭🐹🐹

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hello all!

 

am back in the board to let you know I'm back from my little holiday and have finished my whole brain radiotherapy. Just wanted to share a pic from my holiday to make you jealous. 

IMG_6114.JPG

 

You can also read about my latest adventure on my blog. 

 

https://lifeistooshorttoskipdessert.com/2017/09/09/my-not-bucket-list/

 

Cheers

 

Marnster

 

 

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Lori travels 

yes you are right it is done with angiogram and you may have to stay in over night 

I have never had it not yet anyway but let's hope it works for you are you having it whilst on the eribulin?

they are only an hair with the beads but you will be checked first by the angio team that you are suitable for it 

let's hope next time we hear from you it has done the job it is good to know there is other options 

 

good luck with it all I wish you well

 

kay

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Joelle

thanks for the update glad your mom got sorted it is frightening for all of us and our families but we just all have to try and get on with it best we can there is no other option I am afraid

glad she had gone back to work if she feels that is right for her i on the other hand decided for me it was best to retire as I worked for NHS in cancer clinic and decided it was me time and I was not giving what time I had left to them we are all different the way the treatment works for us and our out looks 

i hope things are good for your mom on eribulin 

I had to wait 9 months for my first scan on eribulin because there was a back log if people and though I did see onc and the ct images they still have not got the report so I am waiting for that to be posted to me when it is done 

 

Take care

kay

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Joelle

thanks for the update glad your mom got sorted it is frightening for all of us and our families but we just all have to try and get on with it best we can there is no other option I am afraid

gkad she had gone back to work if she feels that is right for her i on the other hand decided for me it was best to retire as I worked for NHS in cancer clinic and decided it was me time and I was not giving what time I had left to them we are all different the way the treatment works for us and our out looks 

i hope things are good for your mom on eribulin 

I had to wait 9 months for my first scan on eribulin because there was a back log if people and though I did see onc and the ct images they still have not got the report so I am waiting for that to be posted to me when it is done 

 

Take care

kay

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi ladies!

im back again, I just want you to know i always read your posts and think of you all. just dont always post so im not the whiny daughter! bc i know u guys all are going through this and so much more!

so we r currently waiting in the waiting room for erubilin infusion after seeing the onc. Onc gave us some good news that tumor markers for liver were at 150 in july and now we are at 81! so, seems to be working and we can only hope its doing the same in the lungs and bones.

As for the horrible pain on monday night, it went away on tuesday morning and hasnt came back. thank god. Onc thinks it could be just fatigue from the erubilin.

Starting the 3rd cycle of erubilin today, we have a ct scan for chest and liver on the 25th, praying that all are shrinking!

Mom had the summer off as she is a teacher, she started. bk last week and is hanging in there and doing not too bad. im glad she went bk i think it keeps her happy and fights off fatigue!

praying for all you ladies that your treatments are working and your pains are getting better! lots of hugs

joelle praying for a cure xoxo

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

hey there!

 

So...I finished my 6th Eribulin cycle on August 22nd. I have been feeling pretty great (apart from the fatigue and all) and each appointment with my dr was more encouraging than the last. I had scans done and got the results yesterday. My dr said the results were mixed...a few lesions in my liver either stayed the same or shrunk minutely, as well as the mets in my spine continued to be stable. All lymphnodes and soft tissue were clear as well, too. 

 

Unfortunately, 1 lesion in my liver more than tripled in size which is what I've been feeling, thinking it was my gallbladder. Sort of wish that was what was wrong...It's a prominent, painful lump at the top of my right rib cage. I am gutted...I now have to have an angiographic radioembolization. I guess they shoot radioactive beads (yttrium 90 / y90)  thru an artery to the tumor as long as there is a clear path...and the process for that is just that...a long process. Could take at least a month to get the actual procedure done.  Anyone around here ever have anything like that done? 

 

I don't really know what to feel right now...on the one hand, yay...so much looks good, but...well, yeah...this sucks. 

 

Thanks for taking the time to read this! Hope everyone is feeling well!

xo Lori 

 

 

 

 

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi joellek

if things are changing for you mam please get back in touch with oncologist or her nurse if she is still in pain and pain relief not working take her to A&E  at worst they would admit her to oncology ward which will sort out pain relievers 

 

please post when when you have spoken to someone and let us know how you and mam got on

 

kay 

 

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?