Trial for secondary breast cancer

[stresshead]

Cress, i too would like to know what trials you are looking at at the Marsden. I have just been there and was told there is nothing suitable for me. x

[Tournesol]

Hi, I was on the trial from March 2015 to end of May 2016. I was only on the azd2014 for 6 months of that time before the rash and leg oedema became too problematic to continue. However, I found that the combo controlled my pain really well within about 6 weeks, & the skin problems didn't get significant for about 4 months, so you could certainly hope for some good times on this. We're all different though, and it would also depend which arm of the study you end up on. I was on a continuous schedule, but I think some people on the intermittent arm may have been able to keep going for longer. I'm not sure though, you'd have to Google or ask. Or just try & see what happens. All the best!

Tournesol x

[herbidacious123]

Hi all,

back on here after a few years away as i am about to start Manta trial tomorrow. I wonder if anyone has had long term success on it? Am a bit nervous about the potential se's as i am getting married in september and could do without being covered in a rash! ( i know, vanity,vanity, but hey, a girl can hope!) . Has anyone sailed through with  no problems? 

Herbi x

[Tournesol]

I'd be really interested to know which trials you are considering - could you let me know on here or via PM?

Best wishes,

Tournesol

[Tournesol]

Hi Julia

Thanks for the update but sorry to hear you're coming off the trial. I am still on fulvestrant as my last scan was stable but am fully expecting to come off it after my next scan which has been brought forward a month because I had started getting pain. My next treatment is likely to be capecitabine.

[Cress]

Hello Tournesol,

As of yesterday, that's me off MANTA. In the last several weeks, I fell prey to the skin rash and itching (all over my back arms and left leg.  I wasn't having huge success with it recently, so my onc and I made a joint decision that it was best to stop. Have to wait a week now before I'm allowed any antifungal medication.

Good news is that next Friday, I've got an appt at the Marsden to see if I qualify for one of two trials running there.  If not, it looks like it may be my first chemo - either EC or paclitaxel.

Did you decide on Capecitabine?  If so, how's it working? Hope you aren't getting too much of the hand/foot involvement. 

Best wishes,

Julia

[Cress]

Hi Tournesol,

Just wondering how you are getting on and if you've started on Capecitabine?  I'm still on the 35mg dose and my mouth has cleared up but now I have bloody clots in my nose and have started to get dry skin (my skin has always been on the oily side), so it seems the picture changes after about four months or so.

I had a scan recently and was told yesterday that there had been tiny shrinkage in the liver but none to the breast mass. Perhaps Capecitabine will be my next treatment, as that or e/e was on offer before I started MANTA.

I do hope that you've found someting that's working well and not causing you too many se's. Thinking of you.

Best wishes,

Julia 

[Tournesol]

Thanks Julia. I would definitely consider another trial as I think I've used about half of the available standard treatments now (and definitely done all the easy ones) which worries me... But I think that they might want me to try capecitabine next and it might be time to try that and see how it treats me. I think my feet will have to recover a bit more first though as they are still pretty dry which would not be a good start!

I wish you continued success on MANTA; wish I could have tried the lower dose rather than stopping something that was working, but the consultant was right about my skin needing more recovery time.

All the best,

Tournesol

[Cress]

Hi Tournesol,

So sorry to get your post and news that you can't go back on MANTA. I would feel the same way about being on Fulvestrant only, as it's not enough of a satety net. I'm not sure whether you would want to consider another trial but, if so, I've seen one that might be suitable. It's running in London and other cities and is called FINESSE.

http://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/a-trial-of-lucitanib-for-breast-c...

Lots of luck with whatever you try next. 

Best wishes,

Julia

[Tournesol]

I wasn't allowed to restart the trial in the end as some parts of my skin hadn't recovered sufficiently. Just on Fulvestrant for now but feel that it is not working, so am expecting to be off the trial after my next CT results in a couple of weeks. But I did get some good quality time from it for the first few months so I guess it was worth taking part.

Tournesol

[Tournesol]

Hi Julia,

Good to hear that the trial drug seems to be working for you! I'm still on a break and a decision will be made next week as to whether I go back on the trial at the 70% dose. I'm feeling much better in terms of side effects but the rash is still hanging around although it's faded a bit and is much less itchy. So it depends on the criteria that they use to make the decision I guess. I feel that I definitely need to be back on either the trial drug or a new treatment before too long as I'm starting to get some discomfort in the mets areas so I'm pretty sure that the Fulvestrant alone is not controlling things (shame as it would be lovely to be on a low side effect treatment again!).

All the best,

Tournesol .

[Cress]

Hi Tournesol,

I had my quarterly CT on Monday and appt with oncologist on Tuesday. Radiographer had not done a comparison report with previous scan but my onc showed me the liver lesions and primary and he thought there had been some improvement in both, so I'm to carry on with the 35mg regime. My sore mouth is much better... just hope it holds out.

I know what you mean about eating whenever. During my 10 day break, it almost seemed like normal life had resumed. Has your skin improved now, and are they going to try you on a lesser dose? It has certainly helped me cope with side effects. You seemed to be having fairly good results with the AZD, so I do hope that you can return to the trial.

Best wishes,

Julia 

[Tournesol]

Hi Julia,

Hope you're doing OK. I'm now having a break from the trial drug, because the skin side effects were continuing to get worse. That started last Wednesday and I haven't noticed any significant improvement yet, so it's hard to believe it will improve enough to go back on the AZD after 4 weeks, which is the maximum break allowed. But you never know. Just enjoying being able to eat when I like in the meantime!

Best wishes,

Tournesol x

[Cress]

Hi Tournesol,

Sorry to hear that your skin is still giving you trouble. Perhaps you should ask for the 35mg as well. My mouth is still a bit sore but not nearly as bad as on the 50mg dose. Also, at the first sign of soreness after a couple days, I started gargling with aspirin and steroids and have avoided any severe effects. 

I found an article (see first paragraph on Trial Findings), which seems to back up what you said about a reduced dose still having benefits. I think they are just hoping that 'if a little will help, alot will cure'!

http://www.ascopost.com/ViewNews.aspx?nid=26596

Best wishes,

Julia

[Tournesol]

Hi Julia,
Hope the reduced dose is going well so far. I don't think the trial dose would necessarily be the optimal dose in a phase 2 trial as they are still looking at what people can tolerate (I think). I know that when I saw a different consultant when mine was away she looked surprised that I was still on the starting dose. My skin is getting worse again so I will be discussing this again at this month's appointment I think.
Best wishes,
Tournesol

[Cress]

Hi Tournesol,

I'm a renter too and you're right, as it's not the same as owning or public/voluntary sector housing.

My oncologist has decided to try me on the slightly lower dose of 2x 35mg/day from tomorrow. Due to the protocol, I will have to have extra screening and bloods done again tomorrow. When I had bloods done two weeks ago (before the drug holiday), they showed improved liver function. However, my blood test yesterday was a bit worse again, after being off the tablets. I guess that's some evidence that it was working for me too.

Just hope my mouth ulcers don't come back and that I get similar benefit from the reduced dose.

I have scans in 4 weeks and will have a better idea then... My oncologist said that if it's not working, I will probably have to try chemotherapy but he didn't say which kind.  I was offered Capecitabine at Guy's just prior to being accepted on MANTA. I haven't tried or been offered a tyrosine kinase inhibitor yet - I believe our AZD2014 is classed as an mTOR inhibitor, but I'm not sure if there is an significant difference from a TKI.

I will be asking!

Let me know how you get on with your skin. When I told the team that I was talking to someone on the same arm, they were interested to know if you had any se's. I should imagine that getting the optimal dose is one of the most important parts of any trail. 

[Tournesol]

Sorry, my phone doesn't like me doing long posts! How about you - are you going to restart or is there a different plan?
Tournesol

[Tournesol]

Thanks Julia. I don't think there's any such thing as a secure living situation as a renter unfortunately, but will see how my new place goes. Today's news is that my CT was stable so I am going to continue the trial for now. I asked about lowering the dose but apparently you could not then go back to the full dose so I agreed to see how it goes as my consultant thought things were a bit better on the whole

[Cress]

Hi Tournesol,

I noticed on another thread, that you were worrying about your living situation. I do so hope that you've come up with a solution that feels right and lets you have a sense of security. Always wonder when we fill out the questionnaire at clinic, about quality of life and concerns etc... do they actually do anything with the info?

I've got an appt. with the oncologist today, so will find out what they plan to do regarding my dosage. Sorry to hear about your skin getting worse. I think AZD2014 must be fairly potent. I have read on another site, in a paper, that a reduction in dosage does not make a huge difference to outcomes.  Please let us know how you're responding to the treatment.

Best,

Julia  

[Tournesol]

Hi Julia,
Sorry to hear about the ulcers - that's one of the side effects I haven't had (yet). I hope they will let you continue on a lower dose. I'm thinking they might try that with me too, as I've had a skin reaction for a couple of months now and it's getting worse on the whole. But first need to check if it's still working - will find out next week.

Springsummer , I hope you get a place on the Finesse trial. I don't know much about it but it's good to have new options.

Tournesol

[Cress]

Hello All, 

I'm currently on a bit of a drug holiday from the trial drug AZD2014, as my mouth/tongue ulcers got v bad and last Friday, I couldn't eat or drink. I'm on a steroid gargle and much better now. Seeing my oncologist on Tuesday, so will probably go on a lower dose.

Good luck S/S - it looks like the se's on FINESSE aren't too bad. Hope that you manage to get a place.

Best wishes,

Julia

[springsummer]

I am starting on a new trail next week - maybe if i meet the criteria called FINESSE the drug is similar to avastin in that it stops the blood flow to the cancer that feeds it. main se seems to be hypertension. does anyone know anything qbout it?  or is currentyl on it? would love to hear if you are. it seems to be most effective in patients with a mutation called something or another - can't remember anyway there are testing my liver biopsy to see if i have that mutation.  will know next week 

[Tournesol]

Hi Cress,

Good to hear that the trial isn't too bad so far. I haven't had any noticeable ulcers but have had a slightly sore tongue, especially if I eat spicy food. Do ask your team for something to help if needed.

Best wishes for your second loading dose.

Tournesol

[Cress]

Hello Folks,

Re: MANTA - Going for the second lot of Fulvestrant jabs tomorrow. Only se's from the AZD2014 (trial drug) so far are a few mouth ulcers and general tiredness. I will let you know if I have a bit of success with this new combo once I've had some tests! x

[Cress]

MANTA might be running at the Marsden - just ring the Cancer Research UK helpline and they will be able to tell you, as they have more detail than on their website x

[Stillhere]

Thank you for your replies, I didn't realise that you had to change hospitals.....mmmmm........ I don't want to leave the Marsden, I have so much confidence in them! I'll read up a bit more, but thank you again xx

[Tournesol]

Hi Julia,

Good that you've got started on the trial. And it's interesting to be on the trial drug. I know what you mean about getting started on something new after a treatment fails and then a period of no treatment - I think I had about 3 weeks (although tamoxifen was failing for a while before that) and I was struggling a bit with pain at the time so was very glad (if nervous) to start the trial. Hope that you don't have many side effects and feel well on it and of course that it works on your mets.

Best wishes,

Tournesol

[Cress]

Hi Tournesol,

Snap! I've had my first treatment today and I'm on the 2x (50mg) daily arm. Had loads of blood taken before and after the injections and I would agree that they're not too bad. Just have to wait and see what se's I have. Frankly, after over two weeks of no drugs, I'm just glad to be back on something, as I was starting to get twinges in the left breast. Thanks for your tips about lots of water etc. 

Hi Stillhere,

It's early days for me but, when I failed to make it on another trial (a double blind plecebo one), I asked about MANTA. The trial that I was initially invited to participate in didn't really appeal to me anyway. There are some questionnaires and diaries that you need to complete, but they're quite straightforward and I like the increased monitoring. I've had to change hospital and doctors but everyone has been extremely helpful and kind, so the transition has been very smooth.  Please let us know if you get a place on MANTA or another trial.

Best wishes,

Julia 

[Tournesol]

Hi Julia,

Good luck for tomorrow; I was quite nervous about the fulvestrant injections but they haven't been bad on the whole. Some tips I read on another site which I have been using are to drink plenty of water on your treatment day, to make sure the drugs are at room temperature and not straight from the fridge, and to make sure the muscles which are being injected into are as relaxed as possible. I will be interested to hear what arm of the trial you end up on - I think they all have their pros and possible cons. In answer to your question about previous treatment, I was on tamoxifen prior to going on the trial. I was on it for about a year but it was starting to work less well after about 9 months I think. Before that I did a couple of AIs but not letrozole. And some radiotherapy too.

Hi Stillhere,

I'm on the trial drug twice a day and fulvestrant injections every four weeks. Siide effects have become a bit more intrusive in the last month: the current ones are skin rash on arms and legs and neck, itchy in places, swollen ankles and feet when I sit or stand for long.  But not everyone gets the same side effects. The big plus is that it's stabiised my mets for now and I was able to come off painkillers after a couple of months on the trial. And I'm still able to work and socialise pretty normally.

Best wishes,

Tournesol

[Stillhere]

I have been reading about MANTA trial and might ask about it at my next appointment, to see if I might be suitable, so I am interested in any feedback from you lovely ladies. Do you know which drugs you have been assigned? x

[Cress]

PS. forgot to ask if you were on Letrozole prior to MANTA? I was on it for only 3 mos. when it was found not to be working.

[Cress]

Hi Tournesol,

Glad to hear you've not had any liver spread and your bone mets are giving you alot less trouble. I get my first bum injections tomorrow...that and the bisphosphonates should keep me upstanding for a bit! I won't know until tomorrow which arm I'm on - sort of hope I get the trial drug too. I'm off work at the moment but want to go back, if possible. It's very encouraging to hear that you are still working - thanks again for sharing your experiences. Best, Julia  

[Tournesol]

Good luck Julia! I'm actually still on the trial for now as the liver lesion was found to be benign in the end. Current side effects are rashes and swollen ankles but it's liveable with and may go away on its own apparently (which has happened to some other side effects already).

[Cress]

Hi Tournesol,

Thanks for all the info. I'm going through the screening process for MANTA at the moment.  If all goes well, I will start the drugs next Thursday. I've changed hospital for the trial and am actually at one even close to home than Guy's. The staff have been very pleasant and I'm hoping that I will receive more information from being on the trial. Hope they've found a new drug regime that helps with your mets. Best wishes, Julia 

[Tournesol]

Hi Cress,

I started the MANTA trial in the spring and was randomised to get the trial drug daily plus fulvestrant. The side effects haven't been too bad apart from the last few weeks when i've had some skin problems and ankle and foot swelling which have been more annoying. Prior to that, the main side effects were a slightly sore mouth (no ulcers, and seemed to be controllable by adapting my diet, bowel effects (bloating and wind mostly), taste changes, a runny nose (first month or so) and dry skin and eyes. I've been able to carry on working and socialising pretty much as normal, although the ankle swelling is now making walking a bit uncomfortable so my hiking days may be numbered...

The worst thing so far is that my latest CT scan showed a spot on my liver (no known liver mets previously) so I'm having an MRI to check that out, and if it is a liver met I guess it will be the end of the trial for me and on to chemo. The best thing is that it does seem to have stabilised my bone mets and this has improved my quality of life in general - before I started the trial I was taking painkillers 3-4 times a day and still in some pain, and at the moment I don't need any painkillers.

If there's anything else you'd like to know please feel free to ask. Good luck with your decision and treatment.

Tournesol

[Cress]

Hello Tournesol and Kimmy,

Did you decide to start MANTA? I'm meeting one of study doctors on Monday to see if I meet the entry requirements (I was invited to participate in a Ruxolitinib/Capecitabine study but my blood was normal, so i was excluded). Just wondering how you are getting on with the drugs if you did join the trial? Best wishes,

Julia  

[Tournesol]

Hi Cress,

I didn't have to ask on this occasion although I have asked about trials in the past after searching online. The lead hospital on this one is Queen Mary, although I am at another hospital. Would prefer not to share the name online but can PM you if you like.
Tournesol

[Cress]

Hello Tournesol,
Which hospital are you under and did you have to ask if there were any trials open?

[Tournesol]

Hi, I've recently been offered a place on the MANTA trial which Kimmy1 mentioned below. Just wondering if anyone out there is on or has been on the trial? I'm a bit worried by the potential side effects but the idea of having a treatment which I wouldn't get otherwise is appealing.

Best wishes,

Tournesol

[bertie1]

Hi Kimmy I took part in atrial this year ,it was taking exemestane and another drug unfortunately it didn't work for me,but having said that if I hadn't been on the trial then maybe the mets I had to my liver would not have been picked up so soon.You are scanned more regularly on atrial and I found the trial nurses to be excellent.I would say give it a go as you have nothing to lose.
Kaye x

[Homer]

i would also say what have you got to lose by taking the trial,

i was offered a trial 2 years ago for my bone mets,

the trial nurses are very caring with you every step of the way,always there if you need them

and nothing to much trouble.

They used to call me in between hospital visits to make sure i was ok.

i used to get scanned every 12 weeks that inc MRI,CT & bone scan, some ladies wouldnt like that

but i felt it was a sort of securirty blanket.

my trial kept me stable for 2 years and only earlier this year did i get progression,

so i had to leave the trial.

They have to tell you about possible side effects but it doesnt mean you will get them all,

also the trial nurses told me that i could at any time stop the trial, so you wont have to carry on with it if you dont want to.

good luck with whatever treatment you choose

kimi x

[EJ81]

I'd be interested to hear how you get on as I too have liver Mets xx

[EJ81]

It is completely up to you but I would think its worth a try. Otherwise you might always wonder 'what if...?'. As Ethel says you can always drop out. Also reading through side effects is always scary but it doesn't mean you will get them all. Xxx

[Ethel_horner]

I would say give it a go. If you don't like it you can stop at any point. Trials are needed to find the drugs that work as well as not. It's an absolute must there are women here who would love to have the opportunity. Your team will always have your health as their priority. Ethel x

[Kimmy1]

I have been asked to take part in a trial drug for secondary breast cancer that has mestasied to my liver. On a recent scan overall the liver was much better, with some gone and some shruk, but I have a old lesion and one new one has appeared. I had 18 weeks chemo beginning of 2013 and have been on letrozole ever since, with no side effects.  My consultant has now asked if I would take part in a trial called MANTA which will be a course of Fulvestrant in combiniation with the Dual mTOR inhibtor AZD2014 or Everolimus or Fulvestant Alone in Estrogen Receptor-Positive Advanced or Mestastatic Breast Cancer.
Has anyone else taking part in trials and if so what were your results and are you glad you took part?
Just need some reassurance that I am doing the right thing. I have now received the literature and the side effects are hideous, so really don't know what to do