Hi Marnster Yes thank you...same goes for you?
it will be good to update with results etc later this weekxx
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
miraculous MRI results really would be amazing!
I'm determined to concentrate on having a fab Christmas and try not to worry what next year will bring.
I started my third round on Monday and it seems with each round, the side effects are lessening. So far, I've been really good with this one. Haven't even really lost my appetite with this one.
Have also been making some big decisions about the future and work, etc. Have decided to stop working for a while and concentrate on my treatments and my health. I also want to travel as much as I can between treatments. So I'm pleased that I've been feeling so well lately!
I'm also moving back to be closer to friends and family as I currently don't have a huge support network around me. It will be nice to see friends and family more often.
So it has been very busy trying to get all of my ducks in a row! Four more weeks of work and then probably six weeks until I move. Lots more to organise between now and then.
Hope everyone is doing ok.
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
had my Day 8 on Monday which is my last chemo this year. CT next Tuesday and onc apt 4th Jan.
I'm desperate to preempt the downness. I can feel it starting to creep up now, I know my husband finds it really hard- I either go totally quiet or snap at him for no reason I feel so angry. The hospital nurse said it's when the white cells hit their lowest point and try to rest more.
I do try to keep upbeat and find the brightside, but a life of chemo is crap isn't it!?
Wishing you luck, and apologies for being grumpy
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?
thank you for. Sharing all. That....my eyes get dry, but was thinking its the ipad...really must try and not do loads of stuff just before bed!
the downness..im more sensitive about little things, and much more critical of my partner, the slightest thing can make me angry....I think this drug must get past the. Brain barrier....
my appetite, rarely feel really hungry...but this last cycle am feeling much more healthy than for a long time.
how are your tumour markers doing? Which cycle are you on?
Hope everyone else is doing wellxxx
yes, I also feel quite down in week three.
I've got a pattern to the weeks now- Chemo Monday completely zonked. Tuesday and Weds I'm buzzing around like the Duracell Bunny and can't sleep or rest, not particularly hungry. Thursday Friday Sat Sun appetite returned, more normal, just very tired.
The second week is the same.
On week three I get styes in my eyes, mouth ulcers, feel generally run down and really have to push to get above the lethargy and low mood.
Even so its the most tolerable chemo I've had so far, but I do think my bod goes into meltdown when it hits- like it remembers the previous fiascos and goes straight into flight mode.
My hair doesn't know what to do! It fell out after being hospitalized from the Cape reaction and its now got just past peach-fuzz stage. I think the Erib is slowing growth dramatically but whats there is staying put! I try not to mind, but I do. I liked my hair.
Hope onc day is productive and cycle 9 goes well for you. Will you get time off over Christmas?
ps my eyesight is also worse
yes, am certain it is the Erib. Am coming/ pretty out of it now......seems to be week three, do you find that?
i think it must be cycle 9 im starting.....its onc day tomorrow and chemo on thurs, day 1
saw my gp today just to get a prescription and have a catch up...nce lady. But was reflecting on how well I am feelng..actually wihasmioe, im generally ealthier now than for past 18/months..,. Have moremotivation to sort myself out...house cluttered, correspondence o sort, my thnking also seems more clear, hope that continues!
my eyesight is gong down the tubes a bt...shortsighted.think its the ipad...they will say soon, 'well res shows all these screens affect the retina'. Trouble is...its big business.....so these things are hidden away.
ah well, spare room to clear, bedroom to tidy, neic to pick up etc etc
sorry you hit a low, I had that happen time-before-last. It's a bit difficult to climb out of it sometimes but we plod on eh? Someone (I don't think I'll call her a friend) remarked 'you're still alive so why would you be low?' If I'd had the energy I honestly think I'd have punched her on the nose!!
Bruce (horse) is recovering well. He's 23 so I know there may be trouble ahead but I'm not thinking that far...I don't really do future plans anymore!
Chemo yesterday was fine. The bloods were delayed and everyone was apologising for the wait so I found a bed, snuggled in with my book and had a good rest and Zzzzs after the hectic week!
Just got Day 8 to go and then Christmas off with a scan and review early Jan.
Hoping all is well on Thursday and the following days. How many cycles is this?
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?
always sad to lose afriend like that...pancreatic cancer, as you probably know is apparently much harder to treat, though they are making progressxx
My finger healed in time and antib's stopped any infection in its tracks, so chemo went ahead today. . .blood results were a bit delayed so I had a little nap and then an extra cuppa and it was soon time to come home.
A bit of an emotional week last week; a friend died of pancreatic cancer, our dear old cat had to be put to sleep and then my horse was very poorly over the w.e and I thought I was going to lose him. Weird how things all pile up together.
You must be starting your recovery week now Moijan? Hope you have a happier week than me!
Ouch! Cats have such dirty mouths dont they? I do love cats, but i know exactly what you mean..they dont like meds much, do they?
hope your finger settles down soon, you poor thing. You must be quite worried...but the antibios should help alot....havent managed any of my xmas shopping! Went out with a friend but the shops were full of very expensive things!
thanks for that Moijan, I'll talk to the onc next week and see if they can at least cut it down a bit.
Had a mishap today- I had to give our old cat a tablet for her heart and managed to get bitten in the process. Doh. Very painful and very large throbbing finger, quick trip to the docs, and I've gotta take FIVE antibiotiocs a day for the next week- looks like I'm going to have a fun-filled 'rest week' eh?
Hope you got your Christmas shopping done xx
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
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
Hoping your Day 8 was uneventful.
I seem to be hyper for the first couple of days- probably due to the steroids- and then fatigue sets in big time. A bit fed up with everyone saying I'm doing too much when I don't seem to be doing anything except sleeping!
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
we seem to be pacing our treatment together.
I'm hoping my 3rd round will finish 12th December, and then like you I have a scan in the New Year which I'm trying not to even think about (yet!)
Glad the nausea is bearable, I got a tad worried at first that the chemo might not be working cos after previous regimes it seems so tolerable!
I've had the three previous chemos and two lots of radiotherapy in different areas. I was totally allergic to Tamoxifen so couldn't take it and the cancer found its way round Letrazole, Arimidex and Exemestane.
Surgery seemed to work best for me each time, but these mets are in lymph nodes wrapped around major veins and evidently too tricky to locate.
I'm BRAC2 positive.
Sending kind thoughts and wishing you luck with Day 8, its amazing what we get used to and how we slip into routine isn't it?
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,
Hi withasmile! It sounds like we are at similar stages in our Eribulin treatment. I just started round 2 today and I'll have a third round before Christmas, then a scan on 4 January to check on progress. I think I was the one saying I'd been a bit nauseous on the first round, which I found unusual because I hadn't been nauseous at all on my previous chemos. It's not too bad though. It's completely liveable. I've been working through it so it hasn't been interfering with my life.
Let's hope we both get good news in the new year!
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 Marmster, I see we have been joined by a couple of other new ladies now, on the Eribln thread
Marmster, sorry about your hair, yes mine has gone a bit walkabout! I do hope your sickness improves.
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.
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?
Hi Moijan. I am feeling ok at the moment. I'm currently having a bit of a holiday so I was meant to start round 2 on Wednesday just gone, but I will start next week instead. Feel a bit tired but that could be a) because of the current chemo, b) because of last year's chemo, c) because of the radiation earlier this year or d) all of the above. My hair began to fall out on Sunday but it's no noticeable to look at. It is falling out pretty slowly though it seems to be accelerating as the week goes on. But nowhere near as fast as when I was on the AC combo last year. Am hoping to get some news on my numbers when I see my doctor next week, but don't expect there will be much change after first round. My white blood cell count has been ok so far.
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.
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?
Hi Moijan! You are seeing great results! That's excellent news. I probably won't have a scan until after Christmas to see if things are improving. That will give me a few rounds under my belt.
I've been a bit disappointed to find I have been a bit affected by Eribulin. I wasn't sick at all on my chemo last year and was really lucky to have pretty mild side effects. However, I've felt quite queasy and had no appetite so far with Eribulin. I was really confident it wouldn't affect me at all! I also had a really sensitive and sore scalp over the weekend so I was wondering if that might be a precursor to my hair starting to fall out. But so far it's still there. Poor hair has only been growing back for less than 12 months.
How many rounds of Eribulin have you had so far?
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.
Hi Mojian - I've just finished my first round of Erubilin. So I'm happy to be your buddy! I was just diagnosed at the start of October with secondary mets in my lung. Just the one. I had a CT scan at the start of September and there was a 1cm growth on my lung, but I also had a cold at the time so doctors couldn't be sure if it was cold related or a met. Second CT scan confirmed it had grown to 1.6cm. The primary is also growing back on my chest wall and one of my mammary nodes appears to be involved.
i was on six rounds of Capecitabine before I had the scan in September. The Capecitabine was a precautionary measure to try to stop the cancer recurring or spreading, but unfortunately the lung met and chest wall must have developed while I was on it. So it's not an option for treatment. The mammary node was picked up when they were doing my radiation planning in January. So they nuked it with radiation while they were nuking the rest of me. The September scan showed it had shrunk following the treatment but it had grown again by the October scan.
I was was diagnosed with triple negative breast cancer in my breast and lymph node in June 2015. I had neoadjuvant chemo with four rounds of AC and 12 rounds of Taxol. Then I had a mastectomy and axilla clearance - 34 lymph nodes removed but only one tested positive. Pathology report showed the tumour was pretty resistant to the chemo. Then I had radiation, though there were some delays getting started because of some infections.
I knew there was an increased chance of recurrence or secondaries, but I didn't think it would happen so soon. Was hoping I might get a couple of years not having to go to constant appointments and treatments.
How are you going?
Apparently three years mets.
had cape for two, letro for a month( had it for over 7 years pre mets but told i could stop it and the bc came back! ) was resistant, the Vinorelbine for 6 months, now Erib for 4 months.
was diag with Oes + herz -, lobular bc, how about you? Primary diagnosis in 2001.
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?
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?
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.
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.