Hello everyone, have bedn away and very poor wifi.
someone asked how many cycles ive had and from my recent gp letter i discovered its 20.
have had fluid retention, and sore legs this cycle.....also loads of itching......so im thinking( and this IS a first for me....but im thinking that if my mri shows minimal change, I might ask for a short break....only thing is....I was told more than 6 weeks and I cant go back on it....,not sure if thats still true as initially it was funded on the drugs fund....but even a few weeks might help me feel like a 'normal' person....have to chat with him.
by the way, have any of you ever hurt one of your middle toes and wondered if it was broken? I caught mine in a shoe on the floor( Stupid, I know) and wrenched it...saw a walk in centre nurse treatment who examined it about 45 mins later and thought no break or dislocation, but its still swollen two weeks later...,tho it hadnt been hurting until I examined it again this morning...usual care is to strap it to the next toe for support...whch I did.
I'm keeping everything crossed for 16th Moijan xx
My July CT scan showed nothing new cancer-wise so I'm still allowed my chemo holiday. They'll scan again beginning of October and if there's any growth I'll return to Eribulin.
My leg DVTs and lung PEs have reduced right down so onc suggested a switch from Fragmin injections to Rivaroxaban tablets (I know there's no antidote but it does have a short half-life).
Is anyone else on Rivaroxaban?
Thanks for the good wishes, I hope everything goes well for you. The pain in the bum isn't bad to have and even though it didn't work for me I felt so well on it. People commented on how well I looked.
With Eribulin I've just had day 8 of cycle 2 . Been ok, been very tired at beginning of cycles, today have bad indigestion , although I am on lanazaprozole. Hair is very thin but still got some!
Have scan after cycle 4.
Just hope this works as not many options left.
needing to rest after each core is difficult I know, but I do think the key to surviving chemo is being able to adapt to the circumstances we're placed in.
Giving the chemo the energy it needs to do its work is top priority and its the best excuse to avoid the aspects of housework we've never liked!
You're not hopeless, your bod is just adapting to fighting AND WINNING this fresh battle.
Hi Moijan and all others on eribulin
it must be something they tell every one being unusual I was told that when my cancer grew from behind the implant I had after mastectomy I was just unlucky yet I have found quite a few also unusual or unlucky
hope your PAIN in the bum clears soon so you can get the treatment otherwise it might be like a carry in film
yippee I finally get my scan after cycle 8 next week I am envious of all you getting scans after 3/4 months or cycles
got appointment for sept 4th for results as well
the fatigue is the worse for most of us especially if like me you are always on the go I get out of breath doing house work and get so hot as well but pottering around garden I am ok and I am listening to my body a bit more these days and rest when the fatigue comes on I also suffer with lack of. sleep that is nothing new apart from chemo day steroids when I know I will not sleep I have always suffered that use to go to work on 2 hours sleep the days I did sleep people use to say bad night because I looked more shattered
Wishing you you all well on your treatment
Hi Withasmile, thank you for your reply, you have made me feel alittle more positive, it is such a scary time,but the chemo is being kind at moment, just struggling with the fatigue, feel so hopeless,trying to do chores is so hard I have to rest after each chore. Thank god i have hubby at home and he helps me an awful lot with everything, also our boys are grown up so at least i dont have little children to depend on me. Really admire these parents that are having chemo, and also having children to look after,must be so hard.Really appreciate your reply,it has given me hope,thank you so much,really appreciate it,keep in touch.Lots love, Carolxx
Thank you Bousy,it is really helping me on this site hearing everybodys story, everybody is so positive.Good luck with your treatment and scan.lots love Carolx
hoping Eribulin works for you...I came on to it with my 7th 'outbreak' (breast/chest/underarm/underarm/underarm/neck/stomach & liver) after everything else had stopped working and it certainly seems to have helped.
The fatigue got me too but there are relatively few side effects compared with other chemos, so rest-up and don't fight it- it WILL pass
I was on the same treatment as you before i started this new treatment and didnt work, i was so disappointed as i was on it since feb,nearly six months before doing a scan,thought they could have done scan sooner,with this new treatment i have scan in 3 months time, good luck with your treatment, keep in touchxx
I've been ok so far. I had day 1 of cycle 2 on Friday and day 8 next Friday. Had a very dry mouth second week, and very tired first week. Hope this works for my liver as capecitabine and faslodex not worked for me.
Good luck with your second dose .
Hi Bousy, Just wondering how you going on with your Eribulin treatment, I have started last week day 1 and go for my second session day 8 on weds this week,so far so good,only the fatigue has been really bad. Hope you are doing well, i will be having scan in 3 months time.x
Hello,sorry this is my first time on here. I have metastatic breast cancer, this is the 4th time. I have had it on breast, had chemo and mastectomy and radiation, then went to my ovary, had another op to remove it,then went for 6 yrs until it showed last year in my adrenal gland and now sightings on my liver. I have been on clinical trial it did work for afew months, then oral chem tablets they didnt work, now been put on Eribulin,had day 1 first cycle last week, due in on weds this week then a free week. Is there anyone out there that is on this chemo, it isnt on nhs and my oncologist had to apply for funding for it. Thank you so muchx
It was me who had the Faslodex (pain in the bum). I was on it for 4 months. Just started cycle 2 of Eribulin. So far so good, side effects ok. Hope injections work for you Moijan. I'm hoping Eribulin works for me.
Hi Moijan and withasmile
i quite agree i with you on the palbociclib and any of them really
i am sorry eribulin is not working for you as well now quite worrying for the rest of us as you have been on it the longest so now we will have to see if any of us get past cycle 16
hope the pain in the bum works for you I have not had that one yet but I am sure someone has on here as they were coming off it and going onto eribulin or have I made that up or maybe it is a different one I have not clued up on yet
i was hoping eribulin would work past 12 months as that is the longest Arimidex worked for me and nothing else as come close
fingers crossed it does not give you much trouble and works for a long time
cyber hugs to all
Withasmile.....why did you decline...are you like me, a bit apprehensive?
apparently it works very well....so much so that some hospitals fund it themselves - it isnt on the drugs fund.
must confess, I dont like injections, not unless im doing them! And two long drawn out injections of a thick substance into my btm doesnt appeal at all.
AND its fortnightly to start with!
actually Everybody - do you not feel that its a bit discriminatory that the new drugs...palbociclib and ribo....clib and the others are not being trialled on mets ladies? I think its absolutely awful...I mean, we are the ones for whom the future can seem less certain.......someone should take the issue to court!
I was offered the pain-in-the-bum drug but have declined at present and will play the wait and see game a little longer.
It is effective, so hopefully should do its work for you.
When do you get MRI results?
Sorry eribulin is wearing off in its effectiveness for you, you must be anxious about what comes next. What do you think you'll be getting next?
I was on Day 8 of cycle 8 today - have a CT tomorrow, results not until 9th Aug. Have my diazepam at the ready to get me through the anxious wait! Feel ok at the moment though - just returned from Paris (watching Le Tour de France) so quite chilled. Also just booked a venue for my 50th birthday party next April - I like to have stuff to look forward to.
You take care, big (((((((((cyber)))))))))) hugs to all the Spongebobbers.
Hope you are all still gettng along with spongebob? Hes working a little less effectively for me now...
the next drug im destined for -after my mri....is quite literally a 'pain in the bum'
(which im not looking forward to)
Kay...yes, have been thinking that comment over...its a bit like several of my friends- who were quick to say that 'any of us could get run over by a bus at any time'! Not as comforting as one might think - that one!
im thinking that people aretoo quick to trot out platitudes...almost as a way to avoid dealing with the issue.
.( I still watch out for buses in my living room, bathroom etc in case one runs me over at any time!)
enjoyed reading your blog keep it up look forward to the next instalment
My mother said to me when I told her my diagnosis was we are all terminal from the day we are born that was my support
I think we've probably all found the fear phase gradually becomes easier to bear Joelle, you have no need to explain to us- we're all in the same boat and all just coping as best as we can. You are not alone. xx
Glad your mom's first treatment went well...I think most of us have found its quite straightforward after the first few days, indigestion perhaps, some people have tingling toes/fingers and some the normal chemo symptom mouth ulcers, hair loss, loss of appetite and fatigue but generally it seems to be a well-tolerated drug.
See how she gets on this coming week and then week two should be similar.
Hi Moijan and Withasmile and everyone else
firstly. Withasmile stay on the blood thinners I got blood clot in lung on Tomoxifen and all cancer patients are prone to them some chemo can cause them and the cancer can throw them as well I have been getting out of breath so I am desperate for my scan not long now 3 weeks.The last clot I had I was swimming 20 lengths walking 8 miles a day thought I had copd like my mother I was ok walking on my own but if I went with my daughter I could not walk and talk
Moijan I get tingling in feet and fingers but does not last long I also have stiffness in feet when I get out a chair and I have to stand a few second till I can walk I have also this last month suffered with muscle pain in calves and thighs they ache most of the night and day how many cycles have you had now?
were will I find Zena 75 posts?
i now of to look at mamaster blog
Keep you spirits up moijan
hope everyone is coping ok
Iwas so interested to read your blog..because I too am two years older than my mother.
and your thoughts on it, were mine exactly.
l lost mine thirty years ago and still miss her desperately.xx
love and hugs,
Hoping the weekend brings nice things for you. I am in the Barossa Valley in South Australia this weekend on a food and wine gourmet adventure. A nice mini break between my current weekly chemos.
With the encouragement of friends, I have decided to start a blog about my adventures with metastatic breast cancer. I thought I would share a link to my blog and Facebook page in case you are interested in following along. Feel free to share with others.
Hello Withasmile, xx
obviously you know best what would be ideal for you.....funnily enough, I too am on blood thinners( for a dvt) and one doctor thought I could stop now...however, the haematologist told me that as a metastatic lady,
Id need to keep taking them because cancer makes us more prone to clots/changes the way blood clots etc...so am still a pin cushion.
re the lymphoedema...how long have you had that? I got mine, post infection and I do understand your thoughts on that.......not sure what the best option might be, but maybe your onc/CT results could reassure you on that - the ct should be able to pinpoint anything that could be going on.?
the tingling sounds as if it has been bothersome? Hopefully it will resolve......as im hoping mine will.
do keep us posted about everything wont you...really good news re your lung embolisms disappearing xx
love and best wishes
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