Hi Jacquie - I'm so sorry you've had to join us but would like to welcome you to our little group. The ladies here have been a great source of support and advice for me. My mets started 2 1/2 years ago.
Personally, I didn't get on at all with Capecitabine and only had 9 days of the tablets (I lacked the enzyme necessary to metabolise it and so it made me rather ill). It's difficult to say how soon you might get results as we are all so different in the way we respond to treatments. I've had chemos that have shown reduction in only a couple of days but some that took weeks to show any results. I know of ladies who have had great results with Cape and have been able to take it for years. I hope it will prove very effective for you too.
I've had experience of getting to NED (no evidence of disease) for a few months and clear skin. Another thing to add is that mine is also mTNBC (just saw your other post).
Your Forum name is interesting. Have you moved to the country or is it something you're planning to do?
Hi Daisy - I'm sorry to hear you have the acid reflux too - especially from such a young age. I agree with you that it doesn't sound good not to be able to vomit naturally. I haven't heard of pantoprozole. I have omeprazole and domperidone.
It must be hard all these special times and anniversaries without your mum. I'm very fortunate to still have both of my parents.
It's very nice of you to keep popping in to the Forum and still supporting others. You are a credit to your mum.
Thanks Stresshead, I'll try that. I had been taking Pomi-T but stopped when I started with the acid reflux. Hope you'll soon know if you can get on the Torcmek trial. X
Hi again mo - at times the pain in my hip is terrible but my onc doesn't think it's the cancer. I saw someone at my GPs surgery who thinks it's osteoarthritis but whatever it is it's jolly painful, though not all the time. As for the reflux, yes, it makes me cough as well. I was trying to find possible ways to control the problem without having to take tablets all of the time. The Livestrong Foundation has a video on YouTube where the lady shows some easy exercises to strengthen the sphincter muscle. I started doing them last night....anything that simple is worth trying. Also, I read that eating 4 or 5 almonds can help to control it, and it does seem to.
Thanks for the explanation dbno. I understand your situation much better now. Do point out your blue lump + previous history when you get the chance with someone, if you haven't already. That sounds like progression to me. Although having had some involvement with skin mets myself I know they can see skin mets almost as different. Skin isn't always taken as seriously, so as usual one has to fight one's corner if necessary.Ii hope the scan resolves the hip. As you say we need to know where we are, and if you know you have something there you can be kinder to your hip. My bone mets are in one rib......not too vulnerable......sternum, hip/pelvis joint at back of one hip, and lower lumber vert. I take some care knowing about the last two. Do you have hip pain? So far I don't have any pain & my onc says it is just luck, where the mets are......they can press on a nerve, or not.
Reflux........I have it too, but it only affects my larynx so that I cough. I can sound as though I have something horribly infectious! It used to be only after fatty meals, but now after eating almost anything except perhaps apples! I really shouldn't eat chocolate.....given it up for Lent!......or anything fatty, but you have to eat something! I do like a biat of cake! Have you tried smaller, more frequent meals? But advice is hard to give as everyone is unique. Omeprazole? Doesn't help me, but does help many. It needs to be the 24hour slow release from your GP, not over the counter.
If you have time....and inclination.......do post any results from your scan. Of course the results will be a bit after the scan......more waiting. Something showing on the hip would count as progression. If I was your onc I would use the skin changes to qualify you. Let's see what happens.
So take care. Enjoy spring arriving!
Hi mo - the CT scan is to check progression. Although I know it's growing I don't know if it will measure enough to class it as progression. I find it all terribly frustrating. I want to get a definitive answer on my hip as soon as possible so I know what I'm dealing with and to avoid possibly causing more problems. My usual skin mets have been under control since I went to Germany for immunotherapy last year (ran out of money so no more of that). However, there's a new blue coloured lump has appeared and that's how they started in 2014. One purple-looking lump and then they popped up and grew rapidly, followed by a different type which grew even quicker. Stress levels are high again. No news on clinical trials till I show progression, so I don't know what might be possible, although the Torcmek trial that stresshead is looking to get on might be one, as it includes TNBC.
Re general health - I'm having trouble with acid reflux making me feel nauseus and sometimes vomit. Minor in the grand scale but could do without it!
On your positive note, yes the flowers are popping up all over the garden and the frog has spawned in my pond for the first time in 8 years....what joy! Keep soaking up that vit D.
Hi Freakzilla - like mo says, sometimes they don't want to excise the area because it can cause further spread. My surgeon told me that it was one of the operations for my recurrence that cause the cancer to spread to my skin, so he said that I couldn't have any more surgery after that. I understand why you would want it surgically removed though - that would have been my preference.
One person who I remember had a/some skin mets removed is Dawnhc. She's one of our long standing secondary ladies. Hers didn't return afterwards but I do know of others for whom excision did nothing to help.
I think it's easier to accept what we're told if the medical bods give a proper explanation as to why they suggest a particular line of treatment. It's good to ask others for their experience and knowledge though - without advice from someone else on this Forum I wouldn't have been here now.
Best of luck to you and your wife.
Freakzilla, Like stresshead I can't really comment on your wife's situation except to agree with her that you should ask her onc why he isn't keen on excision before the radiotherapy. I have bone mets which were found 2 years ago after a biopsy of a small spot on my chest, diagnosed by my GP as a sebaceous cyst. I lost 6 months. He removed it as a cyst eventually,.....it was tiny but I was worried because I had a primary 15 years previously.......of course it came back as breast cancer. Nothing has returned at that scar, but a small puffy patch appeared nearby which my onc said was not typical. But it grew a little and a biopsy showed it was breast cancer. My bone mets were stable throughout this. i am telling you this because I asked for radiotherapy on the new puffy patch......about the size of a little fingernail........and onc agreed. The surgeon who did the biopsy said it could not be physically removed, but I didn't ask why. i had 5 days of radio, and after 4 weeks it shrank, and has remained dry and hasn't grown back. That was a year ago.Otherwise I take daily letrozole and my bones continue stable.
They have their reasons to be against surgery......it can sometimes encourage spread......they say......there may be other invisible mets beneath the skin surface nearby.......while radio can be very effective on its own. In my case the radio area was about 2 inches across, around the little patch, probably for that reason. To catch anything nearby. As I say I can't comment on your wife's specific position, but just want to share my experience. Do ask the onc for more detail and discuss it. I think we all need to understand our individual situation. It helps our response to treatment I think. I hope your wife gets a good resolution.
Hi freakzilla, sorry to hear about your wife's scalp met. I cant really answere your question but when i was first diagnosed with SBC i was put straight on to chemo. when i first spotted it i just had a small lump (which for 5 months i was told was a sebaceous cyst) but by the time anything was done aboit it i had 'plaques' in other places (a bit like a rash) so they said too lateto excise. I was then told i was in remission but a few weeks later themets were back in the form of a wides[pread rash. I went to see my onc who dais they were gooing to resection the area ?? but when he realised i had spots on my abdomen he said it was too late to do that as it had obviously spread and once this happens it is pointless trying to surgicaly remove as they would be 'chasing their tail'.
If your wife still just has one spot it may be worth pushing for a removal. At the very least you need an explanation of why they wont do it.
Keep us informed of how you get on and best wishes to yor wife. x
Yesterday we found out my wife had a cutaneous met on her scalp. She has brain mets. She had a crainiotomy about 18 months ago. The lump showed up about two weeks after surgery. It has slowly got bigger. My wife has head MRI's every 6 odd weeks. It has been visible on all of the subsequent MRI's. The first time it was mentioned in the MRI report was 6 weeks ago. A biopsy confirmed it was breast cancer.
My wifes onc wants to hit it with superficial radiotherapy. I want it excised and then readiotherapy. The onc isn't in favour of this.
My wife has never had any systemic disease and is HER2+ and ER+.
Has anyone had a cutaneous deposit excised?
dbno........Reading your post I assume your MRI next week is a step towards being considered for a trial.....to establish progression clinically, although you say you know the mets are increasing. Being secondary gets us into the strangest situations! Are you seeing an increase with skin mets? I can't remember your details. Also the scan will give them a good look at your hip which I suppose can't be too bad as inconclusive so far, but they will try to be sure. All in all you are in a bit of a limbo for now. But I hope it all resolves into a trial treatment.....do you know which one/s are being considered or might be in the pipeline? If you have had no treatment since before Xmas then you will understandably want a new plan and trials can involve really new ideas that are not yet run of the mill. The treatments of the future.
Take care, and always keep an eye on general health. Your body needs all the usual basic support during this waiting game. There is slowly the feel of spring in the air, especially today. Bulbs coming up. Colour. I sat in the sun for a few minutes this morning!
All the best to everyone. Off to bed for me!
Stresshead - thanks for the update. I'm keeping everything crossed that you get on the Torcmek trial, but great that there's another possibility too. Like mo, I've looked up the trial and it sounds very interesting. I didn't realise you'd been off treatment for so long so no wonder you're keen to try something else.
I've not had any treatment since before Christmas. I know the mets are increasing so I'd like to get some sort of treatment soon. Results on my hip are so far inconclusive. I'm having an MRI scan next week to see if they can work out if it's arthritis or bone mets. I'm having a CT scan the same day to assess how far the mets have progressed as they won't consider me for a trial if the mets are classed as stable.
Hi Icedtea - hope you're getting on okay. Good to hear that Kadcyla is doing a good job for you.
Hello to anyone else who's checking in on this thread.
Thanks for your post stresshead. I have been thinking about you but decided not to post questions, and just wait! I am so pleased that you are chosen for the Torcmek trial. I know nothing about it of course, but have googled it and can see it will be tablets. It looks quite a big and important trial. You say you are being treated in London, so I hope that's not far for you. London is London of course, some places being more accessible than others. Fingers crossed. If you haven't noticed the cataract yourself then it can't be too advanced. I know 2 friends who have had theirs done recently and it is very easy today, so that could be in the future if steroids bring them on a bit. One friend had both done with only 2 weeks between, and all fine.
So thanks again for the update. Let us know about any further developments, although it sounds as though you are on the conveyor belt for the Torcmek trial already.......and with another trial in the pipeline! Good.
Love to all, and to iced tea......welcome!
Hi ladies, sorry i havent posted for a while but have a lot going on and feel that i'm in a whirlwind at the moment.
Still no definite info to give you but i have been put forward for the Torcmek trial. It is a combination of two tablets i think. i am having to travel to london for tests: so far have had eye test where i was told i have a cataract developing but it wont preclude me from the trial . i was told that steroids can make these worse and to keep their use to a minimum...not easy for us folk who have to have them to combat chemo effects.
i have also had a heart scan (had one in December which was fine, so hopefully no problem there). Back next week for ct scan (dreading results of that as i have had no treatment now for over 6 months) and a lung function test...a bit nervous about that after having pleural effusions.
The other trial they mentioned isnt ready yet but at least i know i probably have a back up. One thing about the torkmec is that it isnt commercially funded so there is no help with travel expenses....eeek!!
Anyway, when i know something for definite i will let you all know. Love to all. xx
Hi Stresshead - sorry to hear the PlasmaMATCH trial wasn't a goer for you. How did you get on regarding the other two possibilities? I do hope one of them is an option for you. I'm seeing my onc next week so I'll find out if she has any news about trials.
Nicky08 - if you're wanting to get on the PlasmaMATCH trial I hope that works out for you.
Hello other ladies.
Stresshead.......I'm gutted too about the plasma match no-go.........I was hopeful, with fingers crossed........but immediately upbeat about the two new trial possibilities which sound interesting. You seem to know about one of them while the 2nd is new. I think you say that you will know more tomorrow, so at least not long to wait. Fingers crossed again! You are doing so well to be involved in looking for something that might be right for you. Never any good lying back and waiting. I hope you and everyone could enjoy today's mild weather........such a surprise! I had a teddy's tea party with my little grandaughter in the garden! Hard work getting up though!
Take care, stresshead, and i'm hopefully awaiting further news. And all the best to everyone here today! We all need some spring sunshine.
Hi Nicky and others.....no go on the plasma match trial for me.I know I went more in hope than expectation but am still gutted. Good news for you though Nicky....Keep us posted as to how you get on.while we were in London we went to UCH clinical research faculty (i have been in contact with them for ages) and they may have a couple of trials for me, they are ringing me tomorrow so hopefully will know more then.it will either be the torcmek trial or a new one that I know nothing about...all i know is I can't keep hanging on for treatment. Will post again when I know what's happening. Xx
The lady I chat to had rads to a very small area, maybe only as big as a small blister so I'm assuming it was similar rads as stereotactic ie a very small beam to a tiny area and therefore may not be right for a larger area. Sorry I don't know any more and as it's still early days since her rads her onc isn't saying whether it has got rid of the one remaining area of her skin mets. I do know it wasn't causing any pain, just an unpleasant reminder that she actually has skin mets as the Kadcyla has reduced a very large area on her mastectomy side to this tiny 'blister'. Hope that you get some relief soon for your skin mets and get them under control. Is it you that is waiting for results from the Marsden regarding PlasmaMATCH. I went there recently and have found out I do have mutations to a couple of genes and therefore would be eligible for a couple of trials although for me these would be targeting the HER2 gene and separately the oestrogen gene - both showing mutations. Good luck with your results if it is you waiting for them.
Hello icedtea and welcome.Sorry you have had to join us but I'm glad you've found our thread. I have learned so much from it and am still doing so. As you said there is very little info on skin mets and i dont think even the medical professionals are up to speed with it. I was told I had a sebaceous cyst for 5 months by my previous oncologist,breast surgeon and go.although it appeared around the sternum area not one of them thought to biopsy it. I have loads of chemo's which unfortunately haven't worked for very long and am now at the stage where I have to revisit or get on a trial.I had electrochemotherapy which I had to push for,which was very painful but quite successful but mets have now broken out on my back.was interested to read comments about radiotherapy.this apparently has not been an option for me as I had it to chest wall during primary.it may be an option now though so I will pursue it. I'm not sure whether its for actual therapeutic measures or just pain relief. Keep posting and tell us how you are doing. X
Although I don't have skin mets I do chat to a lady who does have them on our chemo ward as we both have treatment at the same time every 3 weeks. In fact the nurses now make sure we are sat next to each other, otherwise we tend to shout across the room! Anyway she has been having Kadcyla for about 18 months now and is doing really well on it - she has skin mets but no evidence of disease elsewhere. She has recently had targeted radiotherapy to the one skin met that had never cleared up. Thank you ladies for sharing your experiences as I was able to tell her about radiotherapy and she pursued it with her oncologist and had it done a month or so back. If I hadn't learnt about it on here, and hadn't passed the information onto her she may not have been offered it.
Good luck to you all, especially if you are struggling right now.
Hello Icedtea - sorry you've had to join us but welcome to our little thread, kindly started by Janice. Good to hear you have your dressings and pain relief pretty much sorted. I guess you have HER2+ve BC if you're having Kadcyla?
There's always people here to help/support/advise or just listen if you want a rant.
Hi Mo - no need for any apology. At least when we rant and ramble here we know that we're talking to people who understand.
You're right about it being like climbing Everest. When I was diagnosed with a local-regional recurrence there was very little information and people seem to think it's not as serious as a secondary diagnosis but my prognosis was 2-3 years (and that was 2 1/2 years ago). I looked up the NICE guidelines to find out what treatment I should have been having. However, NICE didn't have anything about a TNBC recurrence. I contacted them about the lack of information. They just sent me links to various documents about TNBC but didn't say they would update the guidance to include it. The most information I got was from posts on this Forum and being able to talk to people with the same issues, particularly to Bumpkin, was a real lifeline. Without her I wouldn't have been so confident to challenge my former oncologist who was pushing me towards an earlier grave. I now spend many hours a week trawling the Net looking for the latest info and I have friends from another Forum who regularly send me anything they've found about new TNBC research and potential treatments.
dbno..........I agree about learning all the time. What a learning curve this has been! Mount Everest for me. I basically knew nothing until my secondary dx. I don't think organisations like BCC realise how little we all know, or how many people assume that breast cancer is curable today. It may be that there is so much cheerful positivity surrounding the pink ribbon and primary. But there is the risk that secondary is getting left behind. Sorry.......rambling!
Hello stresshead & thanks for the update. But........so sorry the TV nurses were off sick. I suppose they might both have the horrible cough that seems to be going round. They would be more exposed than most of us. So more waiting. You have done well to soak your back and get hub to put on another dressing. A good move. I assume you have heard no more about the plasma match yet?
Dbno.......a TV nurse is a 'tissue viability' nurse who should be very experienced with skin ('tissue' here) conditions and skin breakdown, for whatever reason........burns, infection, mets. The theory is that they should have special dressings at their disposal, with knowledge to use them. That is what stresshead needs right now and I am hoping that on monday whe will be given a more appropriate treatment and/or dressing.
Take care everyone, and keep swimming stresshead! Always thinking of you, and fingers are still crossed.
Hi Stresshead - I don't actually know what a TV nurse is! but how disappointing that they were both off. Roll on
Monday so that you can get them looked at.
Thinking of you.
Hi, unfortunately when i got to hospital i was told both TV nurses were off sick so i'm no further forward. The dressing the district nurse put on was leaking and smelly but because of the adhesive had to soak it off in the bath..neither of which helped my skin. My husband pt another one on and i am hoping the odour doesnt mean its infected. District nurse back on Monday so will just have to wait till then. x
Don't worry about the graphics, stresshead! i'm glad the district nurse has put on a dressing, but also very glad that the TV nurse can have a look tomorrow. More specific experience, so hopefully some good ideas. Yes, it may be a long shot......the trial......but it's a shot until we know otherwise. Hope the TV improves things tomorrow. Let us know if you have time.
Thanks for your support ladies.
The skin on my back has now completely broken down and bleeding a lot (sorry for the graphics) so i now have a dressing on it, done by district nurse. I am hoping to see TV nurse tomorow when i go to hospital.
We have everything crossed here but i keep trying to explain that its a long shot. I also have a met on my neck which i thought was scarring from the ECT but no such luck. Wil keep ypu in the loop. xx
Hi Stresshead - 2 weeks is a long time to wait but at least you're in the process. I do hope you get on the trial. Targeted treatment makes so much more sense. I'm sorry to hear you're in so much pain though. It must be very difficult to get comfortable and rest properly. I'll keep everything crossed that you can get onto the trial. I don't see my onc till the end of this month but if she has any info on trials I'll definitely let you know.
yes, my onc told me about the blood work you mentioned (last year) and it sounds a great step forward because its being carried out in a hospital and not owned by big pharma! So any success will be very welcomed as the possible beginning ...to break the strangle hold the drug companes have over cancer treatment!
i am sorry about the pain you are still having and hope the oramorph helps xxx
your trial sounds an excellent opportunity and I do hope you get on it.
much love, Moijan
incidentally, I am now 3-4 years into mets and I have heard of someone 6 years in xxx
Stresshead, Just to say that I deeply hope that it all works out for the trial. I do wish that some simple, one-size-fits-all treatment could appear, that worked for everyone. But for now I am hoping that your trial goes ahead. I assume that you must stay off all other treatments until the blood results come through, so please just hang in there. We are all rooting for you. I planned to go to a BCC talk about trials last week but the car was misbehaving so didn't dare to hit the motorway. So I still know nothing! I hope your 'plasma match' status is what they are looking for. It may all work out for the best! But you are so right......it's the waiting that wears you out.
And you are right, stresshead, about Daisy. She has always been so caring about us here! Still visiting us. Her mum will be looking down and smiling.
Take care, and roll on spring! I'll keep checking in case the Marsden results come through earlier than you expect. Keep us posted.
Daisy, so pleased you are still 'dipping' in. You had an awful time with your mum but you still take the time to lend support to us........ i think your mum must be even more proud of you now, if that were possible. x
DBNO...fingers crossed that cysts prevail!! Thanks for your supportive words.
I had blood tests done at the Marsden which take 2 weeks. They are looking for certain mutations, which are rare, so theres a huge chance the trial may not be a 'goer'. It is called Plasma Match and is looking at targeted therapies....may be of use to others to look into.
The worst part is the waiting...i have had progresson now since december with no treatment and the mets are worsening by the day and it coukld be that in another 2 weeks i will be no frther forward. If your onc comes up with any info please let us know. I am in lots of pain too as the skin on my back has broken down and any slight pressure or movement rubs it and makes it really sore. I thought it was bad enough on my front but this is awful. Making more use of the oramorph!! x
Hi Stresshead - firstly, I hope you have a good meeting at the Marsden tomorrow. Re the timescale, it's difficult to keep those thoughts at bay. I was told 2-3 years, and that was about 2 1/2 years ago, so I understand your thoughts. However, I know a lass who was given 8 months to live, and that was 6 years ago. I hope you go on to prove them all wrong. There's an American lady on the Inspire Forum whose disease was progressing rapidly and she was able to do very little but she got on a clinical trial just over a year ago and she's thought to be disease free now and has been living life to the full since.
What a treat getting the warm home discount. These little bonuses really do help.
I saw my onc today. They think the thing in my liver is another cyst but it's so small they're not sure at the moment. However, I'm telling myself it is a cyst. I then went for an x-ray on my hip because something happened to it a month ago. I know the radiographer so I asked if anything showed up and she said there was some arthritic changes. My onc is booking me in for a bone scan but she doesn't think it's cancer related. So, not altogether the all clear but I feel a lot less worried. My onc is talking to a consultant who specialises in TNBC about clinical trials but I won't be able to get onto one until my disease shows progression, which of course I don't want.
Let us know how you get on tomorrow.
Just a quickie ladies....i have just realised it it now3 years since i first found the lump that turned out to be mets. it seems a lifetime ago. I know i am lucky to still be here but i am becoming acuutely aware of the 3-5 year survival time that is bandied about especially as i have progression. I am trying to remain positive and keep the dark thoughts away but its not easy.is it?
On a lighter note, i have just had confirmation that i qualify for the warm home discount. I know money is no sustitute for health or peace of mind bt as they say, every little helps si if any of you were thinking of applying, give it a go.
This thread seems a bit quiet at the moment...i just hope everyones ok. xx
Hi Stresshead - yes, will let you know how my meeting goes. And do let us know how you get on at the Marsden. I thinks it's time we blazed some trails....or in our case, trials.
Isn't it funny how pets DO NOT like us using computers or reading papers etc. My brother's dog hates Forumla 1 racing and makes such a pest of himself that my brother can't enjoy watching it if he's in the room. One of my cats once pressed something on my computer which turned the screen on it's side! I had to phone my cousin to find out how to put it back again.
DBNO, i am triple neg, changed from er+ when i gt secondary..just my luck!!
RRH, would be interested to know what is said at your meeting, please let us know.
I am going to the Marsden on Wednesday to discuss a trial so i'll =========================================================7/s867ppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppppt7
Sorry, that was my cat deciding that i should stop typing and feed him!!!.....
keep you posted. x
Thanks for the update stresshead. As dbno said, it is mixed, but on the good, positive side. Your onc could well be right to try the clinical trial and we would all be very interested to know what is decided, and how it goes. i don't know too much about trials. Are you told what your trial is, and details about the meds used, or do you have to go in blind? My monthly BCC secondary group are having a talk about clinical trials in Feb, so I might ask that. But here we will all be interested to know how it all develops for you. You will be on the cutting edge!! Perhaps the onc has a hunch about the trial for you, hence he sounds keen. Take care, and thanks for sharing with us all.
Hi Stresshead - sorry that the skin mets on your back are worse but good to hear the rest is stable. Please do let us know which treatment option you go for. My onc is also looking for clinical trials for me. Remind me what sort your cancer is? Mine is TNBC, but the HER2 is 1+, so classed as negative because it doesn't have the amplification
Hi ladies, thanks for all your good wishes. I have just learned that the skin mets on my back are worse (which i knew if i'm honest) but eerything else is stable., so mixed results but more to the good side than the bad i suppose (still dont feel like jumpimg for joy though). My options are to go for a trial (which i am looking into...will give details ot when i know more) or go on to epiribucin again. My onc is keen for the trial and is holding back on chemo for a while...it is a re-visit so not likey to work anyway.
One interesting thing though...my TM's have continued to fall (now at 23) even thogh there is obvious progression, so those of you worrying about them, please dont...just proves they are only a guide and not particularly reliable. Will post when i know more.xx
Stresshead - Good luck with your scan results tomorrow.
I'm also at hospital for an MRI tomorrow as something new showed up on the CT, in my liver. Hoping it's just another cyst. I'm off treatment at the moment because my bone marrow can't cope with any more Gem Carbo. Looking for clinical trials.