Have been on Eribulin since end of June 2016. Did have two chemo buddies, but they recently went off it.
if you are on Eribulin, or have had a course of it, I would love to hear how things went.
Hugs, Moijanxx
Hi Moijan
I’m one of the ‘skinny’ ladies but haven’t been posting much lately. I’m not on Eribulin now but was on it for 7 months. I had no side effects from it and other than all the hospital appointments my life felt almost normal. I had some progression after that and so I was taken off it but I feel that the progression could have been more because I ended up on such a low dose because of low neutrophils (every chemo affects my neuts badly) rather than it having stopped working.
I hope you get a good, successful run with it.
X
Hi downbutnot out, thank you. What are you on now? My tms fell by 900 points in four months…
its is lovly to hear from you…how are things?
Moijanxx
At the moment I’m on Gem Carbo, which I’ve had previously but I’m only having the day 1s because of the low neuts. I’ve also had some immunotherapy treatment in Germany this year but it was very expensive and I don’t have enough to keep up with the top up treatments. I think it’s working on my skin mets but it hasn’t fettled my nodes and the original recurrence site has been growing as well. The Gem Carbo seems to be controlling it. Other than that I feel well enough, just low on haemoglobin at present. I’d like to see if I can get onto a clinical trial but it’s finding the right one, at the right time, and meeting the eligibility criteria.
If you’re on Eribulin you must have had some other chemos previously. How long have you been metastatic?
X
Hi Marnster
have just seen our post…sorryfor late reply. I have found Erib o be nothing short of miraculous so far, tms were over 1000 in June and now round the 130 mark. Last mri showed a tumour refuction so am hopeful for more improvement. How are you ferling on it? Have had very few side effects.
love Moijanxx???
Hi Downbutnot out and Marnster,
sorry for my absence from this thread.
yes Marnster, my tms are now down to 99! Its really amazing…they were over 1000 in June…but we all know that the path has twists and turns for evryone…so I just need to keep my eye on the ball!
i hear that due to the change in the rules, there will be more Eribuliners soon…so am looking forward to hearing how everyone gets on.
how are you ferling Marnster?
hugs, Moijanxx
Downbutnot out, was sorry to read about your skin mets as well, I do hope those arent painful?, what a shame erib wasnt as useful for you?
I have been on it since the end of June, and Marnster, you asked how many cycles, I think im on number 8, which would mean about 24 weeks ive been on it!
i havent felt sick…its weird that it affects us all differently…was it you who mentioned low white cells? Can you get filgrastim? I thnk thats why im doing so well, my white cells are very high, in fact the onc said that if they got too high theyd have to reduce it! Ithink i was very worried about getting nutrapenia and so the onc put me on it,luckily.
hugs, Moijanxx
Marnster…just to say that my onc said this week that, breaks of more than 6 weeks on Eribulin would mean that they arent allowed to put us back on it again! Im sure the odd week is fine…am not sure wether they mean a six week break, or more han six weeks in total, ever!
it must be the jolly old government again, not the drugs fund admin which make these rules!!
glad you are feeling well on it. Met a lady this week who said she gets sickness, such a shame.
hi Sharon, how are you doing now you are off this drug.? How is your tummy?
Hugs, Moijanxx
Marmster, sorry about your hair, yes mine has gone a bit walkabout! I do hope your sickness improves.
Hugs,
Moijanxx
re HAIR. try washing rarely! Use simple shampoo and conditioer, rinse off under the shower and pat dry. No hairdryer or rubbing, just blotting…thats what I did, and it worked for a while.
Moijanxx
Hi Marmster, I see we have been joined by a couple of other new ladies now, on the Eribln thread
hugs
Moijanxx
hi all,
I had my 2nd dose of 2nd cycle on Monday; so far so good.
Last week was I really fatigued. It was the first 100% dose after previous 75% for the first cycle, and also my white bloodcells were borderline so that may explain it.
So far I’ve found it quite tolerable - my previous chemos have been FEC, Paclitaxel and Capecitabine (which put me in hospital) and after the Cap fiasco I’d pretty well decided ‘no more’ so relieved to be proved wrong.
I have one more cycle before Christmas, then a scan and review treatment in the New Year.
Having the Portacath fitted has been a real boost as I was having to have canulas in my foot.
To the lady who is feeling sick, a change of anti-nausea pills may help as I recently discovered you have many neural pathways to nausea and different anti-sickness pills treat different pathways. I wish I’d know that earlier!
I’ve been living with this since first diagnosis in 1991 and this is my 7th recurrence and 2nd lot of secondaries. Boy have things changed over the years!
Wishing you all a good journey- or at least a tolerable one!
Hi both!
Withasmile…7 recurrences? Wow. And your name suits you. Such a positive attitude!
i do wish you both the very best with your treatment. Im on cycle 8… Day 8 tomorrow. Marnster…Yes this chemo seems a relatively easy one, as treatments go.
Withasmile, which drugs have you sampled so far?
love and Hugs,
Moijanxx???
Mornng Withasmile and Marnster,
am off to get my day 8 in a sec. Yes withasmile,its very strange how some chemos affect other bits of our body, but do b all for the bc! Wishing you both the very best. Hope any s/e fade away bothxx
Moijanxx
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 ???
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???
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
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
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???
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???
Hope you’ve all had a very happy Christmas with family and friends.