Hi anybody had or got knowledge of erubulin as I am going on it in about three weeks time.thankyou sharonxx
Hi Sharon, I am going on Eribulin too as soon as I get back from hols (2 weeks tomorrow). I saw you mentioned that you had to get the funding and I’d read elsewhere it wasn’t given without funding but my onc didn’t mention that - maybe he’s got a stash in his cupboard!
i was given a sheet with details about it from Macmillan.org.uk/ website. Try googling there. Basically all the same side effects as most, not so much sickness but definitely fatigue. The great thing is it only takes 10 mins to go in so it must be a small bag! You take it week 1, week 2 and then have week 3 off so it’s a 3 week cycle.
We can be chemo buddies!
Helen xx
Helen thanks for replying …yes she Said about 3 weeks time…so prob about the same as you…can you use the cold cap or did they just say hair loss…i think oncologist is putting me on a 75%dose but dont know much at all about it …have a lovely holiday…we can compare notes.xx Sharon 
Helen I thought it was day 1 day 8 then 13 days off…wonder if you need blood test before 1 and again on 8…I’m a bit muddled today…a lot to take in only finished docetaxol end march.xxsharon
Hi Helen your right just looked at McMillan…fact sheet…xx yes one week off.xsharon
Hi Sharon, I have just finished my third cycle of Eribulin.
its given on day 1. Then Day 8 then we have a rest week
Cold caps and Eribulin.
My hospital does not use the cold cap for that chemo as there is no evidence it helps… i was quite depressed when i began, as Dad had just died…so they did let me try…but it didnt work.
The other thing is the new method of cold caps, is run on a machine which keeps very, very, icy cold air circulating. It has to be on 1/2 an hour before the eribulin is given and remains on for around an hour afterwards…my hair was already thin and the cold was almost unbearable. The whole process took almost two hours from start to finish. After the first cycle, I opted to not have it as I was feeling better in myself. Nowadays, im in and out in about 20 minutes.
If you do opt to try the cold cap and they allow it…you need to take with you:
1/…baby spray hair conditioner, as they damp the hair down before putting on the tight cap.
2/ a head band to place round the edge of your head to protect the skin at the edges.
3/ wether you go for cold cap or not, be very kind to your hair, use baby shampoo and conditioner- or actually I use Simple shampoo and conditioner.Don’t vigorously rub your scalp, just pat and smooth each product on gently and shower it off. I dont wash mine very often, i let it dry itself and dont brush it…I just gently comb it once a day.
Three cycles down the line, my head itches, I run my hand through my hair and about 8 hairs come out each time. I have had it cut short. So as to lighten the weight of it NB. When i first had chemo years ago, i made the mistake of vigorously massaging and my hsir clumped in a large tangled mess and fell out…very upsetting.
My Experience of Eribuln.
I was started on a 60% dose, as my liver function results were very high.
Sore Mouth
My first cycle, i had a sore mouth for a while, i rinsed with bicarbonate of soda, about a teasp to a cup of water, and it really helped. The soreness went away. Dont swallow it, but you can gargle with it. Some people think rinsing your mouth after every meal is helpful. Use a soft toothbrush.
Anti-emetic prior to chemo
they give this as a matter of course, 30 mins before. I found that once on the drip i started panicking and feeling claustrophobic.This last week, my staff nurse said she had noticed a few ladies getting panicky when they had the anti-emetic and asked if I would like to try it without. I did try it without and I was fine, no panicking at all. I also found I didnt need anti emetics afterwards. ( you might not have the same drug or the same reaction)
Immunity
My white cells fell quite rapidly, Eribulin is well known to do this. I got very tired indeed on days 2 and 9!
I now have Filigrastin injections to keep my white and red cells up and as a result, have felt very well and less tired.
Constipation,
Even tho I drink 2 litres of water/diluted juice a day, it still makes me constipated. Recently got some movacol from the gp.havent tried it yet. Feel less hungry too.
Hopefully this ‘essay’ might be useful to you Sharon, and Helen too. There is also a thread about general preparation for chemo under the going through treatment thread. I have to say that im feeling pretty well on this drug. It apparently was initially sourced from Sea Sponges.
love and hugs xx Moijan
Thankyou souch moijan…very interesting…i didnt needs Antisicks hardly at all on my last chemo docetaxol .the ice cap worked for me on docetaxol.so I may ask them to let me try it at least the first time…so youv still got hair …and sounds like I’m.going to be tired…
Just one thing did you have to bloods done for both injections❔ …thankyou so much
Sharonx
Moijan just one more question.did you have steroids❓ .interesting made of seasponge…my last one was made out of tree bark…sharon.xx
Helenaquarious…have a lively holiday my first dose is 5th Sept…and I am going to use the coldcap…
Sharon.x
Hi Helen yes it will work for us both.,??
Hi Sharon, sorry for the late sign in…no they didnt give me steroids, no sickness and sorry but now almost…no hair!
very sad about that. Yes they do bloods every time beforehand., i usually get them done the day before, as its less stressful for me( I hate needles) yes do try the cold cap, Im sure it was actually working, now I think about it, but because of the panic caused by the antisickness inj, i decided to stop. Let me know how you go with it all, esp the hair!
i wore my new wig today and its itchy! Tho it looks nice!
Thanks moijan …iv got a wig ready in case coldcap doesn’t work…iv got a prob my stomach swelling up again so I’m just off to see if I can get help through a&e…sharonx
Hi Sharon, sorry to hear about the stomach concern!
i do hope A+e say its nothing to worry about, but yes, best place to go. Let us know how you get on
love and hugsxxx Moijan
The Sun has his ‘cold cap’ on , hip, hip, hip, hooray, ?
the Sun has his ‘cold cap’ on , and…we all have hair today?
how are the cold caps doing, ladies?
hope they are workng for you
Moijan
Hi moijan nice singing…working so far .but I’m still not myself .i dont think its the chemo but I think I need the chemo to help with the c…got a family wedding tomorrow.Il be ok if I can sit around alot…went to Tesco with hubby today needed some bits and new makeup.got home.no make up .didnt show on receipt but must have got left in trolley as hubby had to go the till bit mi came over bit funny…oh well will now scrabble around in the old make up bag…hope you had a nice day in Brighton.i thought of you as the new tower got stuck and hoped you weren’t in there?.x
Hi Helen I did post earlier but cant see it.so will say it again…wedding fantastic only couple drops rain so no day spoilt…on the other hand I could have posted your post myself that’s how I feel…perhaps they will lock us up together ?.x
Helen hope you don’t mind me saying but have you developed mouth thrush .i had it before and I felt like a carpet in my mouth.xxsharon❤
Well I hope the next one is better for us…comes round quick and I dont consider I had any good days…fingers crossed.xx
Hi Scratch and Helen,
sorry for late reply, my eyesight isnt as good lately( not the eribulin)so have been resting away from the ipad, a bit worried about the blue light as can damage the retina.
my trip to Brighton was good…went on the second day of the train strike tho. But no probs.
Scratch, wasnt in any towers, what happened?
i wandered about down to the front and had chips! Yes chips! Coast does that to me, had a very unhealthy smoothie too.! I walked about for three hours! Walked on the beach,…wind was very strong had one hand on my wig!I live near Reigate, was it Helen who asked?
re mouth sores/thrush…did have sores at the beginning, but rinsed mouth with sodium bicarb 1teasp to a cup of warm water. After that…no more sores, tho occ feels a little tender, think I react to certain food.
stand fast on Eribulin, I have been impressed, but also im on filgrastim, to build up my immunity. Are either of you on it?
how are the antisickness meds, Sharon, i definitely felt better after stopping them, but if i had needed them, i would have carried on.
the only prob ive had was feeling very down last week, i think its the eribulin and that not a reason to stop, as its working very well. I did postpone my port insertion tho, till im feeling better…am feeling better now, but
am trying o see more ports first.
how is the hair? Lots of love, ❤???
Moijanxx
Oh Scratch, sorry you didnt have any good days! Oh dear! Well its obviously working then isnt it?
do ask about the filgrastim and rinse your mouth after every tiime you snack, try the soda bic, i think you can gargle with it too, but not swallow…
Did the wedding go ok?
moijan?? ?