Happy weekend everyone!
After having brain surgery two weeks ago, I now know my next steps in my treatment. I've written about it on my blog if you're interested in the details.https://lifeistooshorttoskipdessert.com/2017/08/19/what-happens-next/
The highlights are that the MRI I had this week found at least six new lesions on my brain with potential for more to be currently developing. The upshot of this is that I will be starting whole brain radiotherapy on Monday.
Not the news I was hoping for, but at least I know what is happening now and have a plan in place for treatment.
Hope everyone is doing ok.
I'm just starting cycle 3 today. My hair has thinned a lot but still have a covering. I have still got my eyebrows and lashes. I had Fec and docataxel and only lost the whole head of hair. I'm hoping this works as not many options left.
Great news Moijan and you can keep going with the devil you know rather than changing to one you don't!
I think the concern with my bone marrow is more to do with the fact I have had secondaries for some 9 years now and have been on several different chemo's. When I was being screened for the PIPA trial earlier in the year I didn't get to go on it as some of my blood counts weren't recovering well (from having been in Kadcyla) so they thought my bone marrow was compromised. However since being on eribulin they have been fine, other than wbc being hit for which I need the filgrastim injections, so I think it's more precautionary than anything else. Also, if eribulin hasn't shown to have stopped working in my next scans it is a chemo I could go back to after the hormone treatment. We will see! As to the blood thinning injections I am no longer on them, Kadcyla was dropping my platelet count so low I didn't need them any more and I had been having blood thinners due to having atrial fibrillation and, as a direct result of that, a TIA some 4 years ago. As I have since had a cardio ablation to correct and stop the AF which has never returned I don't actually need my blood thinned any more, or no more so than any other cancer patient with no history of these sorts of problems. All this was advised by my consultant at The Bromptom where they have the best cardiology Drs pretty much in the world, so I know he gives the best treatment possible.
A quick question to everyone on eribulin. How is it that the SEs are meant to be hair thinning rather than definite/100% hair loss but I have lost every one of my eyebrow and eye lashes? This has never happened before when I have been on FEC and Docetaxel (both 100% hair loss). After 6 cycles of eribulin I have now had to resort to false eyelashes, which are great by the way, and drawing in my eyebrows each day. After 6 cycles each of the other 2 chemo's I still had bows and lashes. My actual hair is still hanging on possibly due to cold cap, which I now can't stop using in case it does all fall out, and is definitely longer and possibly thicker than when it first fell out - but nowhere near as thick as pre chemo. Just a thought and wondering if I'm just unlucky.
Hi there Nicky,
'bone marrow compromised'? Did they explain that to you? And it wouldnt appear to be cnnected to peripheral neuropathy as far as I can see......😶
As you know, im a great admirer of the Marsden....I recently scoured macmillan re s/e as my legs felt like they belonged to someone else....a bit better now tho, however, I found a very long list of possible s/e each of which they rated as either less of a concern or a concern...dont recall anything about bone marrow.....but as we all know, we have a plethora of blood tests two out of every three weeks, so maybe one of those results hit the onc between the eyes and hes being careful -which sounds excellent xx
yes, thank you MRI - no change so am having a two week break, to regain myself!
and as you know....I am also at some stage, heading for the pain in the bum...which does not appeal to me at all.....will you be missing out a blood thinner tablet before and after the pain in the bum injections? As i understand any haematoma in the muscle will make things more painful.....have discussed changing my inj from the evening before to the morning before the chemo inj, so as to have the 24/24 up beforehand and miss out the one on the day of treatment.
Anyway Nicky, fingers crossed that Eribulin has doen a heap of good for youxxx
A bit of an absence from me but just getting on with things and a few small, one/two nights stay away which has meant no easy access to wifi.
In answer to withasmile's question I was on rivaroxaban until earlier this year and had been for about 3 years. I was on it at my request as I didn't want to keep having the heparin injections and it is prescribed fairly routinely these days for cardio patients that need it. I didn't have any side effects, or any that I was aware of given that I'm on a cocktail of cardio and cancer drugs! You need to carry one of the warning cards with you at all times, but I expect you had to do this with the injections. It doesn't yet have an antidote, unlike warfarin, but one was in the pipeline when I was told about 2 years ago so it's possible there is one now, or soon. It has a 24 hour life so it doesn't take long to get out of your system and of course no blood tests are needed to work out what dose you should be on. Feel free to ask me any questions.
Moijan, hope the MRI is relatively clear so you can take a break from Erubilin, it certainly sounds like the wonder drug for you. I have had 6 cycles and am now getting a little bit of peripheral neuropathy, which I've never had before despite being on various chemo's that have it as a SE. It looks like I will be coming off it after 8 cycles, mainly to make sure my bone marrow isn't compromised (words from the Marsden!) and then it's most likely to be the hormone pain in the bum! But definitely need a short break in between treatments to get some strength etc back before starting something new. It was all a rush getting started on eribulin as the treatment I had been on wasn't holding back my liver met/s so it was a case if getting started ASAP whereas I hope this time around I will have continued to respond well and therefore get a bit of a breather.
Hope all other spongebobs are coping with SEs and that it's working wonders for you as well.
Withasmile...thank you xx will be pm ing you shortly...lets just say, a change is sometimes as good as a rest...xx
Marnster, so good to hear from you as well. Glad you felt able to update us xx
Regarding your diplopia, My guess is, maybe there is some inflammation following the surgery
I spect youve already thought of that and are still concerned xx, just in case its not that....but there is a really good chance it IS that, you know, Because the brain doesnt like being cut or radiated and reacts by swelling a bit.
I know its not the same, but I examined my toe yesterday, just by prodding and gently kneading it to see if it felt the same as its opposite number...and its swollen up more again! So, our body reacts to any insult!
Interesting to hear about your energy during a chemo break...ive been on one chemo or another for about 3.5 years now...I am concerned about inviting resistance...but more than that...would the bc take off to other organs if I stopped?
noone can answer that one...but both yourself, Withasmile and the lovely Barton, all seem to have coped with that anxiety better than I, so id love to hear how you do all cope...in fact Im going to start a new thread on that very question and see what pops up.
love and best wishes to everyone xx😎
Been a bit quiet lately because I've been recovering from brain surgery, but that feels like a bit of a cop out because the recovery has been really easy. This time last week I was just being transferred out of one night in intensive care to a general ward and then I was home by the next afternoon. It's been nice to be home back in my own home.
Everything is healing really nicely and i feel pretty much the same as I did before the surgery. Unfortunately I still have some double vision and unable to stop going cross-eyed. It's ok if I close one eye so have started wearing an eye patch the last couple of days for getting around.
Having an MRI on Monday so hopefully that will be able to work out what is causing the eye problems so we can fix it. Not sure what the next treatment option will be, but expect some kind of radiation to an area on my brain.
Dont go back to my medical oncologist until until the end of the month to discuss when we re-start chemo. No doubt will depend on what is happening with the radiation as they won't do both at the same time. Haven't had any chemo since 18 July. It's amazing how quickly your energy can return when you have these breaks. I always feel it's not affecting me that much. And then I take a break and start wondering to myself, where is all this energy coming from??
keep up the good work on Eribulin everyone! Hope it continues working for you for as long as possible and the side effects are manageable.
glad you had a getaway and hope you had a nice time?
I walked into the corner of the bath and decided my middle toe was broken so strapped it to its neighbour but it healed crooked, and I subsequently learned it should've had a little splint so it would heal straighter. It wasn't painful but now its a nuisance!
I believe the 6-week rule is now outdated.
Hope you're managing with the fluid retention which is so uncomfortable and I had the itching last year prior to starting chemo- I could've torn my skin off- so I really empathise.
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