Kay and Moijan,
I hope all goes well for you.
I'm still on my chemo break and July CT showed lung embolisms have also cleared, so I'm debating whether to continue with the blood thinners (onc has recommended I continue).
My energy is returning slowly and toe/finger/thigh tingling is lessened, but I have really bad lymphodema in my left breast, side and arm which is annoying cos I've managed to avoid it up until now. The lymph clinic want to do manual drainage but I'm concerned it might get 'something' moving around thats best left dormant!
Have a good w.e everyone, and welcome to all the new ladies
i have had readings on both of the tms...they only put down one ofn the form, but my guess is that the test may show both!
Anyway...I did see on another thread that you very kindly said I was an expert on Eribulin..I wish I felt like one...its really strenge because this cycle im getting new symptoms...some of which you said you already get...it feels a bit scary so maybe you can reassure me
I have never had pins and needles in my fingers on this drug..have had slightly sore/red fingertips....but never much to worry about.
this is just past week three and I for a few days now ave slightly sore fingertips, but also pins and needles and tingling of front and back of bothhands...which I find a bit scary. Not unpleasant-but dont want this permanently! Am hoping it will ease up by my onc appt....did email him to let him know...but frankly any damage will or will not occur so nothing to be done in my view.
so will have to make a choice as to wether or not to have my last cycle before my mri. What I am doing is taking a leaf out of Zena 75's book( you will have to read her posts) to see if it helps. Lets just say 'a leaf' is a bit of a punxx
Anyway, hope everyone else is ok....it is a little scary being a front runner for a chemo drug xx
I did not mean they were not good but the test does not mean a lot as some cancers do not produce a ca15-3
and it also depends on what test kit has been used.some with mild to moderate raised ca15-3 have been seen in benign cases plus it can be raised for other cancers it is only a small tool to see if responding to treatment so I will not know till I have ct scan if it is hitting the Bxxxxxx in the liver I know the ones I can feel on sternum have shrunk it's the ones I can not feel I am concerned about so will be glad when September comes and I get results from my ct I have on August the 12th (3 months after I should have had ct and results )
i am lucky my onc had requested them as he told me a year or so ago when I asked him why I did not have test for CA15-3 that he did not believe in the test. I have asked them to do it again as it was may the last time I had it done and I had shingles then the flu so hopefully I will get it done on Monday and will find out if it has been done on wed when I start cycle 8
Hi Marnster, Thank you for clarifying the cycle for me, was having as they say a "blond moment" which goes with my current wig
You were definitely right about not get lulled into a false sense of security as such a small dose. I woke up the day after and felt like I had hit a brick wall. No energy whatsoever and fever and shivers so spent the next couple of days in bed. Feeling back to normal now thankfully so hopefully won't suffer the same this week as hosting an afternoon tea party this Satuday in aid of Breast Cancer Care (got to show off my new kitchen )
Hope the treatment you are on now is working well for you.
It's a sticky one isn't it? I know I once queried why others have a steroid and not at my hospital - my onc is lovely and didn't mind me asking, but said they don't do that, so I wondered if maybe that was why I felt as if I had a bit of cerebral oedema and acted out of character( became VERY. truthful and tactless) during week three.
The literature def says not to have filgrastim for at least 24/24 after chemo so as not to affect the chemo process, and mine is prescribed a day even later after the second chemo, i.e. 3 days after Day 8, so I'll be taking it tomorrow instead of today this time.
But Nicky, I've never felt as you describe-maybe it's the brand? Later I'll get it out and look - but I've had two brands so far, same dose and prescribed on the same days and never felt like I was going down with anything-but I have felt a little dizzy once or twice during a filgrastim day
I think Erib might have increased my tendency to dizzyness -I once had a middle ear infection and since then I have to be careful how I turn when getting out of bed or if I bend over and turn my head, so the dizzyness might not be a symptom for you.
Love and best wishes
incidently ladies, I tried to post this reply just now - and the site posted it as a New Thread! Which Ive deleted.so we have to be carefulxx
I agree with you about the filgrastim, I'm not too sure I should be taking it on the days I've been told to! I need to look into this further and I read one of your posts a while ago about the days you take it on. In fact I get quite feverish on day 4-5 of the injections, so much so I ended up going into my chemo unit yesterday as I had a high temperature and needed checking out. Something I don't need to be doing, or having more blood taken, in between the doses. I definitely feel quite achey, tired and generally not quite right on the days I have the injections, all things listed as SEs. My onc explained that the increase in wbc is similar in the body to when we have an infection as more are produced then, which is why you can feel as if you are coming down with something. Doesn't help me though if I have to go into the chemo unit to be checked out every cycle to make sure I'm not neutropenic. Btw I wasn't, of course, neuts at 13!
Hi move to the country,
its my experience that only filgrastim/gcsh can boost your white cells, please see my post earlier this evening, so i dont need to type it out again. I have to self inject fragmin daily anyway as I had a clot before, so its two injections for 6 days during my cycles. But I have never been nutrapaenic, so its well worth it.
TAKING TIME OUT FROM THE DRUG
i once had two weeks instead of one week three...and my next mri showed progression, have taken breaks on three drugs nw and found the cancer got resistent, but thats just MY experience. I understand needing a holiday very well...my mris have usually been in week three which bu**ers up week three!
re getting upset in week three...I think all chemos can produce this sort of reaction in week three......on Eribulin, week 3's have been much mre taxine..I get furious sometimes and am prone to be ever-so-truthful about my opinions to all and sundry, which was not the case, whilst on other chemos, but that was my experience.
having read your post re filgrastim...I find that info really interesting.
i have been taking filgrastim on days, 3,4,5, and then on days 11,12,13. Apparently its timed to sych with the nadir of the drug....
whatever, ......it works well for me...I read that it should not be taken within 24/24 after the chemo, as it can counteract the effect if taken too soon. I havent noticed it making me tired at all tho....but I did wonder if it had made me feel a bit dizzy ? Its listed in the s/e
another interesting thing is, that the original. Version of filgrastim I had, needed to be stored in a fridge
0-8 degrees."not frozen", But could be left out at room temp for up to three days.
the current one im on, states it can stay at room temp for up to 10 days.....
as im having a couple of days away, I have bought a FRIO WALLET
Frio wallets are used for insulin patients to go away with their insulin and the frio wallet keeps them cool for quite a while. This weather makes the room temp far hotter than usual, and so im taking my filgrastim and my fragmin....which also needs to be kept cooler than 25 degrees - in my Frio Wallet. Which I just re soak as neccessary - the crystals are similar to those used in plant care.
hope this info may be usefull to some of you.....I had to order the Frio Wallet from Amazon
Hi Moijan and withasmile Hi to all and welcome all you newbies
sorry I have not been on time just flies just to let you know I got my tumour markers yesterday and they are down to 34 not good good but not to far away from the 30 top limit and I know it is does not really mean a lot in regards the cancer but at least it shows the treatment is doing something I was aware it was on my sternum but I still have to wait till cycle 8 for ct scan (can not get me in ) i have told them on this forum they have had them at 3 months 4 months and 6 months which I have always had on previous chemo and even though no hormone tablets gave worked more than 9 months on me I always had scan at 6 monthly intervals and with chemo it was 3rd cycles and 6th cycle well just finished my 7th so week off next week then start cycle 8 at the end of that have scan so will be when cycle 9 finishes I should get results but I doubt it as the oncologist only comes on Mondays and it will be bank holiday Monday so no clinic till following Monday which I will be on cycle 10 but sometimes my bc nurse rings with results or if she is due to come she will fetch report if it has been done
hope every one enjoying the weather
Hopefully your wbc won't be too badly hit by the eribulin, unfortunately mine was and I'm now on the injections to boost them, but only after the day 1 dose. These do affect me but I know what to expect now and once I've finished with them, day 5, I pick up and have no problems with the day 8 second dose. If your wbc does get too low it is a pain to have the chemo delayed. My first cycle was like that and what with Easter in the middle of it I think it was about 35 days not 21! As to foods that boost the blood counts I'm not sure but someone else may be able to help.
Lori, I'm not sure if many of us have taken breaks, such as you mentioned, whilst on eribulin but hopefully anyone that can help you will be along soon. I did take breaks on Capecitabine when I was on it a few years back but it continued to work well for 18 months or so until the crafty C got used to it and it stopped working.
Hope everyone is coping with any side effects and that eribulin is kicking the little uggers into touch.
Hi Tessa! You are right. That was my experience of Eribulin. Dose on day one, dose on day eight, take a break on day 15 and then you're back to the start to repeat day one, day eight, break on day 15. I definitely found Eribulin milder than the other chemos I've had, but make sure you're vigilant about any possible side effects and don't get lulled into a false sense of security that it can't be the chemo that's making you unwell (if you do feel unwell) because it's so mild and such a small dose! It's great how quickly you can have it too. When everything runs smoothly, it means you can sometimes get in and out in an hour. I am definitely envious of that now as my sessions seem to have blown out to five to six hours again on my new chemo regime. Best of luck with your treatment.
P.S. Jealous of your new kitchen too!
Sorry for the delay in responding but thank you for your replies to my post of 29.6.17. It has been a hectic few weeks; had a new kitchen fitted which looks fab, i am like a child with a new toy and it was my son's 13th birthday, so another stroppy teenager to deal with
Had my first dose of eribulin today and you are right it is a totally different experience to others. It literally took 5 mins for the dose to go through, took them longer to get the cannula in. Feeling really good, hopefully still will after next (Day 😎 dose. From reading other posts think I have misunderstood the frequency of doses. I thought it was Day 1, Day 8 first cycle then 1 dose every 3 weeks but now think each dose is a Day 1 and Day 8 with a 13 day gap in between! Is this right??
Can i check has anyone been taking any supplements whilst on Eribulin to help keep their white cells up, I'm loathe to have to do that whole daily injection again?
Many thanks in advance
Hope everyone enjoyed the weekend!
I have two questions...
The first is regarding something I read a few posts ago about feeling a bit irritable during your off week. I am in my off week after my 4th cycle and I can't stop crying...I have quite a bit of stress on top of the pesky cancer, but I've not really experienced this kind of breakdown since starting Eribulin or on any of the other drugs I've taken. Has anyone else experienced anything like this or am I just losing it??
The second question is about taking time off. I am going on holiday (which makes my crazy sadness every more confusing) on Wednesday and won't start cycle 5 until July 25th when I return. Has anyone else taken a few weeks off? Any good or bad effects from taking the time off? I'm nervous to not have it for a month, but I am also desperate to get away.
Any insight would be so helpful!
Sorry you have to join the group, but I do hope the Eribulin helps your aunt!
I've just finished cycle 4 and I feel like this drug has been a blessing. I had ascites that, in my opinion, was pretty bad. The nurses would laugh at me when I went in to be tapped because, despite feeling humongous, I am all of 5ft and 108lbs (at the time), I looked like I just had one cheeseburger too many. Typically, tho, they would get 3+ liters each time...and I was going in once a week. It didn't take the Eribulin long to dry up the ascites, tho, and I haven't had to be tapped since the beginning of May.
As some of the ladies have said below, my dr put me on this because my liver had also gotten serious...but, after 4 cycles, I have put on 12 lbs (good and bad lol) and feel more and more like my old self every day.
I hope that helps some!!
Glad to have come across this thread.
My aunt's just gone on Eribulin after coming off a trial due to elevated bilirubin levels.
Her bilirubin levels continued to go up after the first two 1.1mg/m2 sessions of Erilubin on days 1 and 8.
She currently has jaudince and ascites.
I wanted to know if anyone else went on Eribulin when at a similar stage wtih her liver tumours and if the chemo helped at all.
Hi ladies and welcome to all new starters on eribulin. I am about to have cycle 5 next week (with dose 2 the following week). So far so good with reduction in liver mets including the one growing on the recent treatments I had been on. So much so that the recent CT scan only mentioned one liver met whereas I know I had other ones before I started. So they have presumably responded as well and are now too small for a CT scan to pick them up. Phew - makes it all worth while.
My experience of fatigue is I feel more tired after the first dose (day 1) but I'm sure this is down to the filgrastim injections that I take just before that dose and for 5 days after. However these seem to be working and keeping my wbc/neuts high enough not to need any delays in treatment. After I've finished with the injections on day 5 I generally feel fine and don't have a dip after dose 2 (day 😎 and feel so much better in my week 3 - ready to start all over again! In fact the last 2 cycles my OH and I have managed to fit in a couple of holidays in Europe to make the most of the week/10 days when I feel more 'normal' and have walked a fair amount on both occasions where we have been sight seeing. I also find a short walk, not too strenuous can help whilst on chemo - on the days you feel up to it. It really helps lift me up to get some fresh air especially if I manage to get out relatively early in the morning.
Hope everyone is able to enjoy this lovely weather and its not getting too hot or uncomfortable.
Yes am a couple of days in and still feel fine. Think it will be after day 8 dose on Friday that it will hit me. So long as I can do something every day to keep busy. Knitting baby things at the moment for my daughter's friend!
Hope everything goes ok for you.
Withasmile, Sorry, if I never replied to 12/6 xx I had a really hectic June and i didnt see it
nice yo see you posting tho
this was my first forum and i'm pleased I found it- I think it (and Moijan) 'rescued' me from many dark moments!
My day1 was a Monday and I was rarin to go on the first few days and had a slump on Thursdays, and then picked up again for the weekend and ready for the next cycle.
I was more tired on week 3 than I'd hoped/expected but seemed to get used to that quite quickly and if I made allowances I could do something constructive each day.
Good luck, this is the place to ask if you need any info
Wishing you well with everything Bousy and hoping Eribulin is THE drug for you!
Sending kindest thoughts, and the most positive vibes I can muster
Re fatigue... I feel raring to go for a few days after Day 1, more tired after day 8, but i think everyone is different.
remember you can ask for filgrastim, if your white cells drop....
drink loads this weather tooxx
I'm in the same boat as you. My liver is getting serious, also have it in lungs and bones. Just had first lot of Eribulin this morning. I don't know about fatigue, will have to see how I get on. Second dose next Friday. Good luck, I'm hoping that this is a wonder drug.
I have been on denosumab since secondary diagnosed. Had rads at Christmas for spine which got rid of terrible pain. Not too bad with pain at the moment.
Bousy, this will sound a bit weak...but try not to worry too much re the bone mets......my guess is, they may give you zometa or denusomab for those...
.Eribulin worked well on my liver mets and obviously the lungs are nearby, and soft tissue( though different soft tissue) hopefully Eribulin will help for those. I dont think ( but dont know because im on Zometa) that Eribuln has done much for the bone mets. Obviously if you are in pain with the bone mets, then they might offer some rads?
do let us know how it goesxx
Bousy, excellent attitude!
well done...I, and im sure everyone else, will have our fingers, toes and legs crossed for you.
Will they mri you every three cycles, do you know?
I had docataxel in January 2016, after being diagnosed with secondary in September 2015, but after second dose had perforated bowel, which was touch and go. Didn't start chemo again until October 2016, when I had 5 cycles of cape till February this year. Tumour on liver got worse. They put me on faslodex till now,. Tumour marker dropped 3 months ago but now have more mets on liver plus one on right lung. Also have in spine, shoulder and pelvis. Really want this to work, I'm being positive!
Bousy, xx so do I! I hadnt realised nothing had worked For you. All of us mets ladies travel hopefully from drug to drug, untill it stops working.
I have said this before, loads of times....but each time a drug has ceased to work for me....its been preceded by a break...my Cape was working really well until I needed two weeks off it for some other treatment....letrozole worked fabulously until I came off it....next time I tried...it didnt work.
eribulin has been a wonder drug for me + I will never know, but it was working before I took one extra week off - and it had killed my liver mets! When I next had my mri...it was growing again! So I personally would not willingly take a break of a chemo unless my sideeffects meant my quality of life was pretty bad!
i know some other people dont agree with me......but thats the experience ive hadxx
I see oncologist tomorrow then start Eribulin on Friday. I just hope this is the magic drug I need as nothing has worked so far.
If any help to your mum, my hair went thinner but I didn't lose it like I did with other chemos.
My eyebrows went and alas so did my eyelashes- they upset me more than my hair!
sorry to hear about your mum but please tell her its nowhere near as bad as her previous chemos, and the hair loss is not total- most of us have coped well with a scarf here and there, a short crop, or a topper.
we're here to support you as you support her through the journey
I'm glad cycle 1 went well for you and wish you luck for 11th July.
I also have a port fitted after trying to do without for years, and its the best thing! It makes everything sooo much easier and takes away the pressure of playing will they/won't they find a vein for bloods and scans and chemo.
Eribulin has dramatically slowed my liver secondaries, so much so that I'm allowed a break at the moment. I hope it works as well for you