I have been on denosumab since secondary diagnosed. Had rads at Christmas for spine which got rid of terrible pain. Not too bad with pain at the moment.
Bousy, this will sound a bit weak...but try not to worry too much re the bone mets......my guess is, they may give you zometa or denusomab for those...
.Eribulin worked well on my liver mets and obviously the lungs are nearby, and soft tissue( though different soft tissue) hopefully Eribulin will help for those. I dont think ( but dont know because im on Zometa) that Eribuln has done much for the bone mets. Obviously if you are in pain with the bone mets, then they might offer some rads?
do let us know how it goesxx
Bousy, excellent attitude!
well done...I, and im sure everyone else, will have our fingers, toes and legs crossed for you.
Will they mri you every three cycles, do you know?
I had docataxel in January 2016, after being diagnosed with secondary in September 2015, but after second dose had perforated bowel, which was touch and go. Didn't start chemo again until October 2016, when I had 5 cycles of cape till February this year. Tumour on liver got worse. They put me on faslodex till now,. Tumour marker dropped 3 months ago but now have more mets on liver plus one on right lung. Also have in spine, shoulder and pelvis. Really want this to work, I'm being positive!
Bousy, xx so do I! I hadnt realised nothing had worked For you. All of us mets ladies travel hopefully from drug to drug, untill it stops working.
I have said this before, loads of times....but each time a drug has ceased to work for me....its been preceded by a break...my Cape was working really well until I needed two weeks off it for some other treatment....letrozole worked fabulously until I came off it....next time I tried...it didnt work.
eribulin has been a wonder drug for me + I will never know, but it was working before I took one extra week off - and it had killed my liver mets! When I next had my mri...it was growing again! So I personally would not willingly take a break of a chemo unless my sideeffects meant my quality of life was pretty bad!
i know some other people dont agree with me......but thats the experience ive hadxx
I see oncologist tomorrow then start Eribulin on Friday. I just hope this is the magic drug I need as nothing has worked so far.
If any help to your mum, my hair went thinner but I didn't lose it like I did with other chemos.
My eyebrows went and alas so did my eyelashes- they upset me more than my hair!
sorry to hear about your mum but please tell her its nowhere near as bad as her previous chemos, and the hair loss is not total- most of us have coped well with a scarf here and there, a short crop, or a topper.
we're here to support you as you support her through the journey
I'm glad cycle 1 went well for you and wish you luck for 11th July.
I also have a port fitted after trying to do without for years, and its the best thing! It makes everything sooo much easier and takes away the pressure of playing will they/won't they find a vein for bloods and scans and chemo.
Eribulin has dramatically slowed my liver secondaries, so much so that I'm allowed a break at the moment. I hope it works as well for you
I have just finished cycle 1, due next one on the 11th July, have got to have a port fitted as not got good veins. No hair loss as yet but am cold capping. Only side effect I have had is indegistion but other than that all good. I was diagnosed with secondaries to my liver in December 2012 so nearly 5 years go, had xeloda for over 2 years but recent scan showed progression so swapped to this. Would love to hear from anyone else on this drug and how lon you have been on it. Kim xx
hi all, and welcome Bousy and Tessa!
Its a good drug Teresa and Liz and if you've had other chemos previously you'll enjoy the easier regime. As Moijan said, week three can be a bit of a surprise tetchiness-wise , seems to be a build-up of chemo and tiredness. I've found it better to accept I might be a bit glum but it passes.
Wishing you both lots of luck.
We're all here to send good thoughts and answer questions or worries. I've found its a really helpful group.
Sarah, so pleased you're now 'stable'.
I had six cycles and my stomach lymph node mets and liver mets were stable enough for me to take a break with CT scans every eight weeks.
Have a good w.e everyone
Hi all have just seen oncologist for ct scan results after 5 cycles of eribulin. I am classed as stable, a couple of lung mets have grown but under 25 per cent so they class that as stable. He said he will give me upto 8 cycles and then re scan . How long have ladies been on eribulin?
Welcome new spongebobs (we've been labelled this by our lovely Moijan, who has been on this the longest, as I understand the drug was initially derived from sea sponges - in case you wonder what on earth we are on about!)
There are quite a few of us on this drug so I'm sure there will be one of us able to answer any questions you might have. If you read back a few pages I think there are some posts, especially from Moijan, which say what side effects we've had, not that you will necessarily get them all. I think all of us have found it quite tolerable regarding side effects but do get some of the listed SEs, quite often you can something prescribed by your oncologist to help with any SE that is causing you problems.
I will also be joining the eribulin gang on 12th July after a recent scan shows mets in liver so will be great to share the experience
Am joining the Eribulin gang next week after Faslodex not working. Hope this works as have new mets have appeared.
Am joining the Eribulin gang next week after Faslodex not working. Hope this works as have new mets have appeared.
I dont know Kay, so many ex nurses and nhs ladies seem to have bc or other. I read somewhere or there was a book...said cancer personality = too nice...think we all give so much to. Others and then may e get low on energy for ourselves?
i realise that we could be in the minority on BCC Tho...as we. Know, noone is immune.
my breast surg cons died of lung. Cancer..he was such a sweetie...in fact he was really the lead in BC in our hosp.
Anyway Kay, i do know how very hard it is to push when you are ex nhs, you feel you have to be a 'good patient' never mind.
love and hugs.....
mine are all behind my silicon implant that I had done after mastectomy and down sternum they have pushed my ribcage over to my left side I know the one on my lower left right side as shrunk and the one trying to come through skin on sternum as not grown and I think the one at top of sternum as also but as I had multi tumours in one capsule of liver and in the other capsule a 7cm tumour I wanted to know if they were shrinking or even gone (can hope) i also have tumour in my spine but that has not moved since radiotherapy 6 years ago plus I have one in node in my epicardial pad fat and under right arm
the annoying thing is if I offered to pay I bet I would be in within the week I did ask my bcn when she came couple of weeks ago to chase it up she is away at minute so when she comes back I will ask her to print my bloods off with tumour markers she will have to do first one again because I can not remember I think 94 but I will have to start writing things down
my friend started her first chemo Monday she is bowel letters got lost down to 6st I at to ask my friend from work specialist colorectal to look out for her in the system anyway she has now been operated on and started so that is good ,
went for pre chemo bloods and my opd manager was in there looking very pale she had breast 2 years ago on aromadex now no chemo just radiotherapy but she now has a new primary lung which she said had gone to liver so I have just sent her a card saying if she wants to talk or just company I would come
said I would not be offended if she didn't she lives on her own and is a private person and not everyone wants to let it all out as I have found out before when I have offered to befriend
any way you take care
thats good then at least it is buying you some time
i on the other hand have just completed cycle 6 expecting scan that they put through after cycle 5 guess when I will be having it mid August that will be after cycle 8 I am very disappointed as I wanted to know if the ones on my liver are shrinking but I suppose on the scale of things another 2 months is nothing but at least I could have settled a bit (hopefully) I do not know why it is 2 months longer than I have been told other than now they do 7 days a week I would have thought they had caught up a bit by now I do know there has been a big influx of cancer diagnosis recently so that could be why but even August will have to wait 4 weeks for result unless they have improved on that so prob will have had cycle 9 before I know ct results
take care wishing you all as well as you can be
Good news Nicky, thanks for the update
hope everyone else is coping
Just reporting in after my CT scan last week. I have seen the actual scan with my onc yesterday but don't have the written report yet however the main pesky lesion in my liver that hadn't responded to the last treatment I was on has now shrunk - hooray. Not sure by how much until I see the report next week but at least it's not growing! All other mets seemed stable as well.
Generally not getting any side effects except for a change in taste after the first dose, but not the 2nd. Hair still hanging in there and growing, I'll need it cut soon, but hope some new growth helps cover the baldy bits (they're not too bad and can be disguised with a hairband). Eyelashes and brows definitely thinned so it could be time for some false lashes soon - ED can help with those and says they stay on for a few weeks so wouldn't need to do them every day. I've stopped taking the steroids and don't really have any problems, very occasionally a short spell of nausea but if needed I take an anti sickness tablet.
Hope all other spongebobs are coping with the treatment - and the hot weather.
thanks for that I will look into the eyebrow tattoo I do use a good eyebrow pencil by young blood mineral range and one from benefits but though they say stays on for 12 hours mine does not due to being hot most of the time
Glad you are pleased with your topper unfortunately my hair went apart from the back and sides but that just thinned and I am also an allergy case and one of the ones I am seriously allergic to is parabans which is in most beauty products so I would have to be patched tested if I did have eyebrows done
i have just started cycle 6 and this is my bad indigestion day so I can only eat very light today taking lansoprazole before each meal I am also awaiting for date of my first ct scan on eribulin
Oh, thank you Helen,xx
yes, im afraid I havent had a moment to spare and forgot to feedback here.
its only a very tiny change and To be honest im happier to stay on it for a little while. Hoping things are ok with you, and also all the other spongebobs xx
My eyebrow tattoo didn't hurt at all - maybe just a tiny bit nippy when the therapist went over the outer part of my brow but overall it was fine and well worth it. I have had mine touched up and that part of my brow was without the nippy feeling that time. The numbing cream is sooo good.
I have got got my hair topper now - got it on Saturday and feel amazing. I think if my hair does ever come totally out, I will stick it on with wig tape! When I was at the salon, I met a girl who had no hair due to Alopecia and she was getting something similar to me but it was getting stuck on and she could wash her hair as normal. It would only get removed and replaced every few months. I think I would go down that road if down the line I am likely to be permanently bald on treatment - provided I could still afford it!
U look good, your face is radiant, exudes with energy.
Is your cancer always hormone negative? I'm sill puzzled with this. Or maybe it's really not important. I've asked my doctor this week to check on the molicure to see if that will provide more clues For treatment. Some times I don't think doctors really care that much, or maybe they have to stay distant from patients to be emotionally healthy for their profession.
i used to work for BHP and had been to Sydney and Melbourne once on biz. It's sooo far from TX. Always want to go to NZ and Australia to find the hobbits and see Maggie's big rain.
Thanks for the feedback. I'm not afraid to change med from Taxol to Eribulin now. Changing is good. Just like traveling changes daily sceneries. I'm sure it will bring out good for everyone.
So where do u want to go when your next break comes up?
Hello cat girl,
My heart breaks to read through your sufferings. When my cancer came back last year, the tumors on lymph nodes pressed some peripheral nerves on my left arm. My whole left arm and fingers got very puffy and numb, I could not raise my hand to wear contact lenses or even wash my face, not to say dressing myself, buttoning, putting earrings or necklaces (and I thought I had frozen shoulders or lymphodema). Tumor also pushed and fractured my c7 spine. My right side back had this excruciating pain that I really wanted to die. Then I bought these zero gravity chairs that would raise the leg and recline the back, also with pain killer and the Taxol chemo, things were under control for a while.
i started taking voice lesson to sing (just to have a happier distraction) and go out again. I also go to a natural healer 2, 3 times a week. He gives me a lot of encouragement and support that words can not describe.
Taxol reduced several tumors but increased numbness. I lost my rings a couple of times. So I've decided not to wear the more precious ones. I stay with hook on earrings and long necklaces, so I can still be myself, just easier. In general, I Do not talk about my treatments with non cancer patients to reduce my own emotional strain from repeating the unhappy situations over and over.
my husband juices vege juice every morning for me with carrots, beets, apple, turmeric and dark green leaves. I eat oatmeal with nuts and boiled egg for bkft. I also eat more salad in general. All protein goes on top of big plate of greens. I try to walk a bit every day after dark (so I just go out bald, or liberated as my husband will say). I still work mostly full time, just no travel plans, no liquor.and limited public exposure.
Hope everyone has a lovely weekend.
Wow Marnster it looks AMAZING- and so do you!
Luluroe I started with BC oestrogen neg, the next episode was pos and they all stayed pos until this latest episode which is a combination of both.
Kay sorry to hear about your latest upset- hope you begin to feel brighter soon. Let us know when you get your scan date.
Moijan, all the animals seem to ignore eachother and do their own thing.
Helen hope you're enjoying retirement?
xx to all, and everyone/anyone else
i too am triple negative and have been on Eribulin. I had five rounds of it after I received my secondary diagnosis in October 2016. I found Eribulin very tolerable, but I have also been very fortunate in not having any severe side effects from a whole range of different types of chemos.
Unfortunately, Eribulin was not effective on my tumours so I have changed to a different chemo combination. I have just completed three rounds of a carboplatin/gemcitabine combo and I am having a CT scan on Monday to see if it has been effective. I am also getting an MRI on Monday to check my brain, head and spine as in the past 10 days I have developed a numb chin, lip and gum on the left side of my face. We are checking to see if is a new tumour in my brain or in my jaw that is pressing on a nerve that is causing this numbness. We shall see.
I have mets in my lungs, chest wall and various lymph nodes. We discovered a met in my brain in February and I had stereotactic radiotherapy on it and that was successful in shrinking the met by almost half.
I am in Australia and have been using my breaks between treatments to travel. In the past week I have been in central Australia checking out the sights, including the incredible Uluru. It was a pretty amazing experience.
Hi All and welcome Luluroe
well after saying I was raring to go which was how I felt last Friday
Saturday came down with a bang started to get shakes Saturday afternoon head felt it was wobbling hands shaking I got home and was so exhausted I just took myself off to bed then in the night started with diarrhoea all night my head was thumping my eyes hurt sore throat blocked nose muscles in legs and arms aching badly
so now a week later I still have score throat nose and muscle aches but I am up even if I feel weak.. I could not believe it just getting over the shingles my first chemo out of isolation and I come down with what I would say was flu or has it was my 2nd dose of cycle 5 was it chemo overload will never know
start cycle 6 Wednesday then When completed cycle 6 will have my first scan on eribulin which will be a ct to see if it is working I hav asked to have it on my week off but they can not guarantee it will be so I will have to see how it comes through and if not cancel it and make one my self to suit
I hope at last sorted my ibdegestion out I now take 15 ml of lansoprazole before my yoghurt for breakfast again with my soup (no bread) and again with before my tea which is a light poached fish and I had no indigestion at all so I will stick to that every Friday which is 2 days after chemo my week off I eat anything so out for lots of meals
hope all you spongebobs are doing ok and eribulin is working for you