Chemo Buddy Needed - Anyone Currently on Eribulin?

[pussy]

Hi Moijan 

great news with the release of the 2 drugs will you be eligible for it along side the injection in the bum beginning with F that   Can not spell at the minute  (chemo brain ) 

kay

[Moijan]

Yes, good luck with both

was thinking maybe trends are changing-maybe they don't worry so much...140 as systolic would be normal enough for my comfort....and you have found it much lower at home so your plan is a good one xx

moijan💚💚💚

[pussy]

Hi Moijan and all

i had my flu jab on Saturday out of the staff doing them I got a GP so I asked to check my blood pressure giving him my left arm as I had at the chemo suite and it was 149/90 he said we would not treat  at this level

i had ordered an omron blood pressure machine from medisave reduced from 89 down to 56 it arrived yesterday I plugged it in took my BP and it was 111/77 I deleted it and this morning took it again and it was roughly the same so saved it to memory and will take again this evening I will continue to take twice a day for couple of weeks then do an average reading for the 2 weeks. So it is looking as if I may have white coat syndrome even though I do not feel nervous the only other thing should it not be that is my

HUSBANDS DRIVING. Which after being happy with readings after 2 weeks I will do one every time I have been in car with him without going to gp or hospital and see if it is up then haha 😂 

kay💉

[Moijan]

Ann x

Yes...and actually, I just realised I get 'white coat' about loads of stuff...what are the drugs doing to me? Is this a sign of cellulitis? Does this digital thermometer work well enough?(I have three or four now and they all say different when I need to check my temp) have I got another DVt? I hate having to take myself in hand sternly and say...this is likely an over reaction

i know the 'white coat' thingy doesn't quite fit any of those, but I'm sure my bp prob rises and falls when I'm anxious

Moijanxx

[ann-m]

Just popping in, yes Moijan, I can totally relate to white coat syndrome & it’s been a problem for me over the years. After one GP appointment when first diagnosed, I decided to do it myself & got the Boots bp monitor. 

As I thought, there was no problem at all with my bp & now my GP & practice nurse are a lot happier about it!

ann x

[Moijan]

Hi KAY,

Havejust read Nickys post and forgive me...but white coat syndrome can be quite pervasive, especially with us 

ex nurses etc.....I have proved this, by having a second recheck done at the opd...in fact they always do this if my readings are queried anyway and then I consciously relax and it changes.....

''I think a machine from boots or other chemist would be really useful.....I have two, but now rarely need to use them unless I'm concerned.....a sphygmomanometer can't really be as accurate if you are having to juggle a stethoscope as well....treat yourself.

Moijan😎

[pussy]

Hi nicky08

yhanks for reply I doubt our GP loans out bp equipment i as when my husbands was very high I had to do his pressure at different times of day over 4 week period 

but I was thinking of getting electronic as finding it difficult using my sphig and stethoscope on my own  but I do not feel I suffer from what they call white coat syndrome but who knows 

thank you for your reply though 

kay

[nicky08]

Hi kay/pussy

I have had high BP every time I have been on hormonal treatments, but it goes back to normal whilst on chemo.  I am constantly monitored (well, I have regular checkups!) and I would say that a BP reading of over 140/90 would be determined to be high.  I do know that my BP goes up, and is therefore generally inaccurate, when in a hospital or doctors surgery so I bought my own blood pressure machine many years ago so I can check it at home.  Maybe your doctors surgery can loan you a machine to take your own readings over a course of a week?  Mine did have loan machines before I bought my own one so I was able to check without the inaccuracy that White Coat Syndrome gives!  Hopefully it's just a blip but I also know that there are several blood pressure medications that work perfectly well whilst on Eribulin so a cardiologist or your own GP would be able to prescribe something if necessary.  Btw I attend the cardio-oncology unit at The Brompton Hospital who specialise in this type of problem, so I do know what can be done to help.

Nicky xx

[Moijan]

Kay, have sent you a pm xx

[pussy]

Hi Moijan

it was a dr I spoke to unless I misheard but my nurse is due on the 7th so I will ask her I will also ask my friends who still work at the hospital in heart clinic to ask consultant what his thoughts are if it is still run by opd a lot has  happened in opd since I left 7 years ago and not sure if opd still supply nurses or if cardiology have there own staff now but I will find out  as I think it is too high

kay

[Moijan]

Hi, my go would be concerned about a continuous reading of diastolic of 90 upwards, but maybe it would be good to get your own machine? I do mine sporadically and it varies a lot. At the hospital it's usually 75 or under, but not always. It also depends a little on age as to how they view it.

and to say, 'we don't treat it if' isn't helpful, as if it is higher than ideal...they should have a chat and look at your general health...why don't you go and see the practice nurse?

Moijan💚💚💚

[pussy]

Hi again 

forgot to mention 

have always  had a low blood pressure about 115/75 but the last few chemo's it had been 145/81 then my normal reading but it varies from week to week this last week it was 125/94 I did say I was concerned about the diastolic reading more than the systolic but they just said if I was concerned then to see my GP well that's a laugh earliest I could get is Nov 14 th  so I asked for someone to ring me and they just said we would not treat people with a diastolic reading of 94 and to ring them back when it goes over 100 which I thought was a bit much because it would mean my heart was not resting and would be meeting my systolic 

does any one else suffer with high  blood pressure reading on the diastolic if so are you being treated 

kay

[pussy]

Hi Moijan Bousy and others 

the thing is I have had shingles as you all know since being on eribulin have had 2 bad colds last one lasted 6 weeks and cold sores off and on through the 13 cycles that much so I only drink if out in bars through a straw and even take my own straw and this month not had any I suffer with fatigue quite bad after each chemo second dose really knocks me off my feet  but I think I will have it because like I said we are between the devil and the deep blue sea which ever we decide 

but I like my week off I am out everyday doing things 

take care all 

kay 

[Moijan]

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

Mx

[Bousy]

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

[pussy]

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

[Moijan]

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💚💚💚

[Bousy]

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

[bezza111]

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

[bezza111]

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

[Moijan]

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

will def keep in touch.M🍀

[pussy]

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

[Moijan]

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💁

[janieb]

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

[Kimmy1]

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 

[Bousy]

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

[LYNDYLOO]

Hi Nicky

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

Have a good weekend

Linda

[nicky08]

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

[pussy]

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

[Moijan]

Thank you Bon
Mx

[bonariensis]

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

[Moijan]

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

[helen44]

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

[Rose47]

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

[Bousy]

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

[Moijan]

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

[Carolyn52]

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

[janieb]

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🤗

[Carolyn52]

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

[janieb]

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 😘

[angelah61]

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 😞

[Moijan]

Good luck Janie
Am booked for day 1 later today!
Let me know your future plans
Mx

[janieb]

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

[Moijan]

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💚💚💚

[angelah61]

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

[nicky08]

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

[janieb]

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 !

[angelah61]

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

[Marnster]

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. 

[lori_travels]

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