Abemaciclib and Fulvestrant

[Hiker]

Hi there

still doing well. No side effects whatsoever now. Due a scan end of this month🙏

[Gemini111]

Hi brilliant to know that your combination has been working well for you. Can I ask how things are going at the moment? 

[Hiker]

Hi Everyone

ive been on this combo 6 months. My hair thinned a bit (it’s not a chemo drug) but nails ok. Diarrhoea was a problem first 4 months but now none. I’m fit with no exhaustion. I think everyone different

i wish you luck

[Nannie]

Hi all, 

I am due to start this combination in a couple of weeks time. Feeling very apprehensive at the thought of losing my hair and nails again, and is listed as a common side effect.

Has anybody experienced this whilst on this treatment? 

[Hiker]

Hi there

my husband was told to keep off white bread and sugary substances as it feeds fybromyalga   , There are some good food guides on internet. It certainly reduces the pain

i was on Anastrozole but didn’t get on with it. Crippled my joints and like you doesn’t help the walking. I’m lucky on the above two drugs I’m able to do all my hiking. Trying to maintain weight as apposed to gaining it. Diarrhoea is under control. Itching and skin problems cleared up

try and keep walking - it teases the brain - and it should ease off with a proper diet. It’s so important to keep the exercises up

my first PEt scan came back very good with reductions in lymph and bone mets and less activity. I feel lucky

i wish you all the best. Keep thinking positive 

[bluefrog]

Hi

i have also just been diagnosed with fibromyalgia and because I am on blood thinners I am unable to take anti inflammatory drugs. I’ve never heard of this condition, and all the symptoms I had had been put down to the cancer and my reaction to the drugs like Letrosol that I had been given as they had all caused me major joint pain. 
My new drug is Anastrozole which I take with Abemaciclib and so far nothing has changed. My cancer appears to be responding so that is a good and positive thing.

Any advice on how to manage the fibromyalgia would be appreciated.

Due to my reaction to the cancer drugs I had to cut back on my exercise as I could hardly walk, which for a hill walker has extremely frustrating. Lack of exercise has not helped with gaining weight as it can’t help with my joints. I can last about an hour walking before I just can’t do anymore. I find that part so frustrating and debilitating but at last, after two years I now know why and I’m not going mad. I have a very limited appetite, but sweet things are a killer I was more a savoury person but now I’d kill for chocolate, it’s like a pregnancy craving and I had apples 🍎 for that!! I have upped my swimming and will hopefully restart my canoeing but the prospect of saving myself or my kayak is very slim at the moment😂😂

Try to keep smiling even if this feels like a mad carousel at times, which it does, with an ongoing onslaught of drugs, treatments and conditions and all we want to do is get off because there are times when it just gets too much. It is what it is and the best we can do is try and cope with it and not beat ourselves up when it gets the better of us and we just don’t want to face the world. Someone once said to me when I was not copying too well - ‘stop, breath and refocus and when you’re ready and it doesn’t matter how long that takes, then rejoin the world.

All the best to you both.

[Hiker]

Hi

Thank you for your feedback. It’s good to hear how people are fairing on this combo (although everyone is different). 

i have joint ache - but once I get walking it goes. My husband suffers with fibromyalgia so we are a right pair. However he doesn’t like walking which I try to encourage him to do.

you say new tablet - what’s is it?

wishing you well as you seem to be doing good - 

[bluefrog]

Hi Pussy

i took that combo for a couple of years, I was diagnosed with secondary Jan 2020. I had a rough time at the beginning as I reacted to everything they tried ie Letrosol and a few of the other hormone tablets. These drugs targeted my joints. So they decided to try me on the fulvestrant and abemaciclib.

I had a reaction to the abemaciclib as I developed a rash but this occurred after about a year but by reducing the dosage it has now all settled down. At my appointment in August at the outreach centre I had a major reaction to the fulvestrant where I couldn’t get my breath and my blood pressure shot up. It was decided to try again but at the hospital but to take a prescribed antihistamine prior to treatment but again I had the same reaction. So am now on abemaciclib with another hormone tablet.

For nearly two years I had the injection combo and apart from the rash, no other side affects and it was working, keeping it all stable. I have a large backside with plenty of padding, so even the injections were fine, one advantage I guess.

I would say, in my experience, the combo worked really well but after two years the body decided it had had enough as I would have gladly carried on.
However, this new tablet seems ok but I do again have joint pain with my knees and ankles but two weeks again I was diagnosed with fibromyalgia so it could be that or the hormone tablets or both. 
Wishing you all the best,  I used to try and keep reading my book when I had to get my backside out😀

[Hiker]

Hi Everyone

i started on this combo 4 months ago. Mets in chest spine and pelvis but small. I’m on 150 ml 2 tablets a day and jabs of 500 Fulvestrant once a month

i had a skin flare up on chest neck and face first week as well as diarrhoea. Oncologist gave me hydrocortisone cream which cleared it up. Last month itchy skin but this has cleared up. Apart from the occasional bouts of diarrhoea no other side effects. I’m on holiday in Tenerife and the heat and sun not effected my skin. I am also an added hiker - I have not suffered with any fatigue. My tumour marker was 53 to start and now 49. Last scan inconclusive so having PET scan next week. My nodules on my chest have gone which is good. Having trouble though maintaining weight. I’m usually 8 1/2 stone now 8  I remain optimistic

my primary was in 2018  I had lumpectomy, mastectomy it then came back in skin  had op to take the nodules out which involved skin craft  However it spread to lymph nodes under other armpit so put on this combo

look forward to anyone else who has just started 

[Potter1]

Thanks

niw have appointment for scan ,Monday 4 th nov ,let s hope my veins behave and don t play hide and seek 

xxxxx

janet

[catokitty]

I had cyber knife to my spine at the Marsden and it was very straightforward.  Results appointments are always unsettling but as your son said it is pretty positive and there are options for further treatment.  Thinking of you xx

[Potter1]

Hi all

so had results of scan yesterday,not great ,but to quote my son ,who is a histopathologist ,pretty positive as no other spread 

i knew i had liver mets ,one has grown ,so having another scan in couple of weeks to check for any other mets and growth in liver 

if stable i can stay on medication ,as i understand it ,and perhaps have cyber knife to the grown liver lesion ,or some type of ablation 

if more mets not quite sure ,possibly a trial at the marsden 

trying to stay positive ,not easy 

xxxxx

[catokitty]

Good luck for your results. Keeping everything crossed for you.    I saw the consultant oncologist yesterday for scan results and my spinal mets are currently stable which is a relief but MRI showed more fractures in vertebrae next to the operation site possibly due to osteoporosis.  I am having a couple of teeth out tomorrow before I can start bone strengtheners and am dreading it but trying to be sensible about it.  It's only teeth after all.    I am glad to hear your diarrhoea cleared up.  Keep us posted xx

[Potter1]

Hi all

have sbc diagnosed in March 2019 ,been on abemaciclib 150 mg and fulvestrant injections monthly ,tolerating pretty well ,diarrhoea at start but ok now . Last few weeks had quite itchy skin 

going for check up results tomorrow,will see if medication keeping cancer stable ,fingers crossed ( secondaries are in liver ) 

will let you know how I get on 

[catokitty]

Hi  I have just started on 100 mg a week ago as previously I was started on Ribociclib 150 mg and was sick virtually everyday after taking the tablets and could barely eat anything so they stopped it and started me on Abemaciclib.   I have had some stomach cramps and diarrhoea but not every day and am much better than I was on the Ribo.  I am starting to feel tired but have not had any nausea.   I have no problems with fulvestrant.  I did have one or two hot flushes at night but nothing major.  Oncologist was very surprised by my reaction to Ribo as it is supposed to be the gentlest of these drugs.  She started me on 100 mg because she said I wasn't very big so maybe size has something to do with it. Nurse told me they start you on the highest dose to see how you tolerate it and then tinker it accordingly.    I have mets in my spine and had a fractured vertebra which had to be fixed with a carbon screw which was a big operation followed by radiotherapy.  GP fobbed me off telling me I had sciatica.  I am hoping I continue to tolerate the Abemaciclib okay.  I hope things settle down for you. 

[Mermaid007]

Hi,

just wondering how everyone is doing on this combo.

As I mentioned previously I had to reduce from 150 to 50 and have felt fine. My Oncologist has just upped me to 100 and have to admit the tiredness is debilitating. Slept for 12 hours the other night and could have carried on. Admittedly it was the day after Faslodex/Denosumab so maybe it will get better in a few days. Tummy issues getting worse too. I was really good on just 50mg twice a day but I’m guessing it doesn’t work as well on the low dose? 

Debs 

[Mummybob]

Thanks, I’m hoping the lower dose will help me to keep with it and hopefully it will work. I was an Anastrozole for over 2 years so I’ve done pretty well so far.  My BCN told me that the faslodex is very effective on its own.  Fingers crossed for us all x

[Mermaid007]

Hi,

I was on faslodex for 9 months prior to adding Abemaciclib to the mix. I can confirm that , for me at least, it’s the Abemaciclib causing fatigue. I felt fine on Faslodex alone. Still, hopefully the addition of Abemaciclib will give us longer on the Faslodex which I think is easy to tolerate.

good luck x

[Mummybob]

Please see my post.  I’m new to this too.  Fingers crossed it works xx

[Mummybob]

Hi, I started this combo last month on the 150mg pills.  I suffered a very sore mouth and bad tummy pains with diarrhoea.  The Imodium pills sorted the tummy upset but then I would be constipated for 4 or 5 days.  I also felt very tired on and off.  However my bloods were good.  This month I have had my dose lowered to 50mg with a view to increasing it to 100mg later.  I have managed much better on this dose.  I am finding it hard to know when it’s the pills or the jabs that are making me feel off.  The loading dose of 3 sets of jabs of Fulvestrant in one month is hard work.  They are definitely less painful if you get the nurse to let you warm them in your hands before she injects them.  Also your pee smells like chemicals and you can taste it too.  Get some extra strong mints. My cancer is in my chest, lung and now liver.

[rosiet]

I start on abemaciclib/fulvestrant combo tomorrow

[rosiet]

About to start on Abemaciclib and Fulvestrant in  ?next week or so

[Mermaid007]

Hi,

I’m also on this combo. I started on 150mg twice a day but on day 14 I came out in a horrible rash all over my body only my face was spared. White cell count low and bad tummy. I am now on the lowest dose 50mg twice a day and so far so good... been a month now. When I see my oncologist in 2 weeks he will see about upping me to 100mg to see if I can tolerate that level.

I seem to be loosing hair, nothing dramatic but a fair bit every brush or wash. Have you found this? 

Hope it works well for us

x

[woowoo12]

hi havent done this before I've been on this drug and injections for a month now there's only 2 of us at our hospital. I'm on the highest dose but am now low in potassiam so have a week off how are you finding it. would be nice to talk to someone else on it.

[Vicky77]

Hi Olivia

I'm not on this combo but hoping you can answer a question.

Last year I had 3 months of Fulvestrant which didn't work for me and prior to that I had 18 months of Anastrozol until that stopped working.

Does this mean I wouldn't be considered for this combination treatment?

Thanks

Vicky

[sarahindhaugh]

Hi Olivia, 

I’m possibly lagging behind this original post, but I started taking Abemaciclib alongside Fulvestrant in March this year. I’d already been on Fulvestrant since last July so I think I’m a ‘wildcard’. 

So far the only glitch was a drop in my white cell count which prevented me taking abemaciclib for 3 weeks. I’m back on it now at a reduced dose (100mgs twice a day as opposed to 150mgs twice daily that I started on. 

Diahorrea seems to be to only other SE I’ve experienced so far - and I find it easy to manage so it doesn’t bother me. 

Not sure whether I’m benefiting from it yet but my recent scan shows I’m still stable - which I’m happy with. 

Hope that’s of use to anyone. 

Sara

[OliviaL_BCC]

Hello everyone,

I work on the Policy and Campaigns team at Breast Cancer Care, and I wanted to ask if anyone has been treated with abemaciclib in combination with fulvestrant?

Abemaciclib is currently being considered by the National Institute for Health and Care Excellence (NICE) to be made available on the NHS in England for treating hormone-receptor positive, HER2 negative secondary breast cancer. However, its use in combination with fulvestrant will offer those who have previously been treated with one line of hormone therapy for their secondary breast cancer the opportunity to benefit from this drug.

We are gathering evidence to contribute to NICE’s patient carer groups submissions and we want to hear from you. We will use the experiences of women who are on the clinical trial for abemacicilb to help us inform our response on what access to this drug would mean to women with hormone-receptor positive, HER2 negative breast cancer.

Your answers will be collated and presented to NICE, any quotes or information you supply will be anonymised in our evidence. The questions we’d like you to feedback on are:

• Are there any advantages of abemaciclib and how have these affected you?
• Are there any disadvantages of abemaciclib and how have these affected you?
• Is there anything else you would like us to tell NICE about abemaciclib or the current availability of treatments for metastatic breast cancer?

We are looking for responses by Wednesday 19 September.

If you have any questions about our work in this area, please email campaigns@breastcancercare.org.uk.

Thanks,

Olivia

[Monarch3]

Hi Pussy and Kay

I’m new to the secondary breast cancer forum so haven’t quite got the hang of it yet, and I do apologise as I have now read all your posts, but when I first replied I just thought it was someone who wanted to know if anyone is on Abimaciclib. I do hope that you can still keep going and keep strong for as long as possible despite treatments not always working. The name I have registered as is Monarch 3 as that is the name of the drug trial I’m on. I do wish you well.

Lots of love from Jane xx

[Monarch3]

Hi

just noticed your post. I’m on Abimaciclib with letrazole as part of the Monarch 3 drug trial. Started in March 2015 and so far have no further progression of the cancer in bones, which was already showing extensive spread before I started treatment. All is well, although I had to reduce my dose to 2 tablets twice a day, which is better for me, as I found the side effects too troublesome. I noticed that some of the posts in relation to Pablociclib actually showed that the bone cancer had reduced or disappeared in some places. Mine has just stayed stable. I remain on the trial until the treatment stops working. The research results look good.

I’ve been told it’s the latest breakthrough in the treatment of secondary breast cancer.

Have you started it yet? I’m 61 

Best wishes xx

[Moijan]

Hi Pussy,

have sent you a pm.........

[pussy]

Hi Nicky 08
I was going to ask him if arimadex is worth a another try that is the only one that worked for me for one year only nothing else as worked for more than a couple of weeks he did say I coukd try vinelabine (spelt wrong) but there was only a 10% chance it would work but as we all know it is not a cure it may hold and may not but what ever chemo I have had it grows back with in a month hence been through all hormones other than fulvestrant I do not think I can do the vinelabine for 10% 6 months of
no life to be in same boat so I have decided not to go down that route and as far as I am aware there are no current trials I am ill with the flu and so never asked any questions because I knew things were not right as the docetaxel for last 3 cycles was not working my tumours on chest wall went down after chemo and grew back the week before the next cycle so I was aware and because of LFTs being high I can not try fulvestrant
Take care
Kay

[pussy]

Hi Kirky 68
He said there are no trials yes I am devastated and very emotional at the moment not helped by having a flu bug and chemo as been very cruel this time
Thank you for kind word
Take care
Kay

[pussy]

Hi carolyn52
I am afraid no hormone drug as worked longer than a few months for me and the only one I never had was fulvestrant and because of my LFTs being to high I can not go on that either I asked to go back in a month when I have got rid of this flu bug as I was to I’ll to ask questions what was happening with the docetaxel towards the end chemo tumours on chest went down just before next chemo they grew back and that happened on my last 3 cycles
You take care
Kay

[nicky08]

Dear pussy/kay

Im so sorry to hear your news that you can’t go on the trial and also that because of your LFTs you can’t have an alternative treatment. I’m guessing you have had all the hormonal ones (we do go through them all too quickly) but wonder if it’s worth re visiting one if it worked the first time?  However I do understand that this may not be possible and also understand the wanting more time - this is the thing that this horrible disease robs us of. Hoping that you get all the help that you need and we will be holding your hand.

Nicky xx

[kirky_68]

Hiya Kay

Sorry to hear your news, must be devastated. I hope your ONC is able to come up with something else soon or is able to refer you on to someone else who might be doing other clinical trials.

You're right, no matter how good a run we get of course we always want more.

Wishing you the best of luck and sending a big hug.

Paula

[Carolyn52]

Hello kay

Sorry to hear you haven't got the trial drugs but they obviously feel they would not work.
Can you not go on a basic hormone pill as a palliative treatment ..lots of ladies do have good results .

Hugs xxxx

[pussy]

hi everyone 

just update on the abemaciclib and fulvestrant 

I would not be eligible for the abemaciclib as too many treatments and unfortunately I can not have the fulvestrant either as my LFTs are to high I have now stopped responding to chemotherapy so there are no more treatment options left for 

wishing you all the best with your treatments and may it last for a long time I managed 8 years but greed sets in and you want more 

kay

[pussy]

Hi stillhere

i am not sure if I am going on it or something he is just going to talk to me about I may not even be eligible for it if and when it does get approved by nice as I have been through all the hormones other than fulvestrant  and had 4 different chemotherapy so it maybe like the other combo’s which I have not been able to have because of the restrictions they put on to how many treatments you have had previously 

He just booked marked it in my notes to be discussed after ct scan when I finish this round of chemo 

but will keep you posted 

I am not private but I would pay depending on price but looking on America site it looks to be 2000 dollars for 14 tablets which is beyond what I could afford out my pension and pip 

kay 

hope your treatment continues to work for you for a long time 

[pussy]

Hi stillhere

i am not sure if I am going on it or something he is just going to talk to me about I may not even be eligible for it if and when it does get approved by nice as I have been through all the hormones other than falodex and had 4 different chemotherapy so it maybe like the other combo’s which I have not been able to have because of the restrictions they put on to how many treatments you have had previously 

He just booked marked it in my notes to be discussed after ct scan when I finish this round of chemo 

but will keep you posted 

I am not private but I would pay depending on price but looking on America site it looks to be 2000 dollars for 14 tablets which is beyond what I could afford out my pension and pip 

kay 

hope your treatment continues to work for you for a long time 

[Stillhere]

Hi Pussy, I was interested to read that you might be going on Abemaciclib, not that I have as it is ?? not approved by Nice?? but I've been on the sister drug Palbociclib for 2 years now in a trial. There is also Ribociclib, all three are called CDK inhibitors which target 4/6 pathway so they all do the same job. And probably the same side effects.

Can I ask, are you a private patient or maybe going on a trial? Best of luck with your discussion, keep us posted x

[pussy]

Hi Carolyn 52 

onc has not said he is putting me on it yet but booked marked it to discuss when I finish docetaxel which i have last one on 29th may and I have my ct scan on 26th May checked if he still wanted mr to go ahead with ct seeing it had come through a bit earlier and he said yes I suppose 1 dose of chemo after ct  is not going to make a great deal of difference to any results 

hope your treatment is treating you kindly 

kay

[Carolyn52]

Hello kay

Just popping in to wish you luck with the new treatment ..must confess had to Google it but it does seem a bit kinder than chemo . It's good there are new treatments coming along ..

Hugs xx☺

[pussy]

Hi all 

sorry  about this drug abemaciclib but not approved here yet only in states think it says on nice review sept 18 but it is A combo with Fulvestrant (faslodex)

kay

[pussy]

Hi All 

anyone been given fulvestrant combo which is Fulvestrant (faslodex) and  abemaciclib was approved Feb 18

it is for her 2 positives and ,her2 negative metastic breast cancer

pussy

i