Yes Redridinghood....well done, good advice,
was just about to say, there are loads of us all with a variety of mets.........mine have been with me for about 3/4 years........its a new phase to adjust to...you arent alone,
much love Moijanxx
Hello Patricia, welcome to the BCC forums! i assume you have come to this thread because of the skin associations. It does sound as though you have mets......the 'bites'......and that could eventually be confirmed with biopsies. You could ask for a biopsy. If you are HER2+ve then your onc could well be right to suggest herceptin.........it is one of the 'wonder' drugs. Cape (capecitabine?) is very good too. He knows what he is doing. The kadcyla has worked so far because you don't have any distant spread, to lungs or bones etc, but if the spots are some sort of local spread then herceptin could be a better treatment now.
Mets are not good news of course, but many medical conditions aren't. But not the end of the world either. The spots mean your original breast cancer has spread locally, and will need treatment, hence the herceptin. There are many treatments. Yours could well be described as a 'local recurrence' as you don't have any other distant spread. Lungs, liver, bones etc are 'distant. I have had small patches on my chest......local......and have had radiotherapy on them which I am hoping has worked........but also I have mets in my bones, which are controlled at the moment.......stable for 2 and a half years so far. I had lung mets which have vanished.
You are right to have come to these forums, but I also suggest you visit the much busier 'bone' thread where most people have bone mets, but also often mets elsewhere. You would find it much busier than this thread......skin mets are quite rare, but bone mets very common, hence a busy thread. The ladies on the bone thread visit daily, they are very supportive and very knowledgeable. I suggested the same to jazmia (Renee) below and she has found her feet there. Try it out! https://forum.breastcancercare.org.uk/t5/Living-with-secondary-breast/Bone-mets-please-join-in/m-p/4...Explain your situation there again, and you will be welcomed.
There are many treatments for breast cancer that has spread beyond the breast. Many ladies continue for many years, sometimes on one successful treatment, although most seem to change to something else eventually. You will hear more stories from the amazing bone ladies! i won't ramble on any longer, but welcome to these threads, and do try the bone ladies! Goodnight!
I was diagnosed with Breast Cancer skins mets last week so i am trying to get my head around what this actually means. I have HER2 BC and i had mastectomy and 36 lymph nodes removed in June 2015 followed by chemo and rads. In April 2016 i had a local recurrence of BC in my arm pit it is less than 2 cm but inoperable due to its location
I have been on Kadkyla for one year and everything has been stable until now with he appearance of about 12 insect bites on my forearm of the side with the tumor which the doctors said is mets despite my not having a biopsy yet. I dont have any spread elsewhere.
To make matters worse i have lymphodema in the affected arm.
The doctor has said i need to change treatment to Herceptin and Capp or i might be offered a place on a trial if i am suitable. Please tell me is having developed mets a very bad sign and i would love to know how long you have lived with these as just been reading on line and i wish i had not.
I am so glad to have found this group xx
Jazmia..........welcome (if that is the right word) to these threads. You will find people here who have also stumbled into this strange world who can give advice and support. You ask if you are the only stupid one? Nobody with breast cancer is stupid! It sneaks up on us, and has taken us all by surprise one way or another. It sounds to me as though you have mets in your skin, as well as liver and lungs. i assume you are HER2+ve as you are taking herceptin and perjeta. I am glad you have been able to stop docetaxel........it is a hard one for some, but has to be taken to get the herceptin and perjeta. These two are wonderful drugs and hopefully will work very well for you. How are you doing now? do you take anything else as well?
I am on letrozole because I am ER+ve, and I have mets in my bones. These are well controlled for now, and my lung mets vanished after 3 months on letrozole. So things can go well, not always badly! I have had small skin mets on my chest and have had radiotherapy which may have worked. I wait and see. I may go onto the same chemo to get her + perj as you because one biopsy of mine was HER2+ve........if my chest mets return.
I hope things stabilise for you. It is often said on these threads that once you have a plan then things begin to improve. You have had a hard time losing your hub and your mum. and now this. But focus on the advice of your onc and ask plenty of questions. Also do browse round the threads here. There are lung and liver threads. People are very keen to share what they know. I often read the bone thread. It is a busy one! Bones are a common hidey hole for mets! You would be welcome to post there and introduce yourself so try a visit: https://forum.breastcancercare.org.uk/t5/Living-with-secondary-breast/Bone-mets-please-join-in/m-p/4...
Describe your situation again there, and you will get some informed replies, and a good welcome! This thread sometimes goes a bit quiet.......skin mets are not so common. They can behave a bit differently........ask your onc on the 23rd about radiotherapy, and even electrochemotherapy which is newish for skin. There are now 17 hospitals offering it. Just something to bring up with the onc.
I must stop rambling! But as i said before you are welcome to all these threads. You are not alone! Do browse around. And as I said do introduce yourself in the busy bone thread! People visit there daily. There is a lot of friendly chatter, but also a lot of useful sharing and advice and support. Take care,
i am hoping someone on this site has similar cancer to me ,
i started with a lump in my breast about 7 years ago and stupid ,i now realise but the day i found the lump i was burying my hubby,i had also just buried my mum and honestly just did not want to put more worry onto my family as they had gone through enough,however i swept it under the carpet for all this time until in december last year it broke through the skin by weeping and bleeding so i had no choice but to go to the doctor,
i had all biopsies and tests and was told i had breast cancer which had spread to liver and lungs,plus some lymph nodes in stomach.
no cure but could be controlled?
i had two sessions of chemo ,plus herceptin and perjeta,but had to be taken off the chemo as i was hospitalised with very very bad diarrhoea,so now on perjeta and herceptin every three weeks ,i still have the diarrhoea,but i am on 8 immodium a day to control it and oncologist and doctor both tell me this dosage is fine to be on permanently.
have been fine for the last six months ,but breast has started to weep again ,not a lot but still a worry ,i see my oncologist on the 23rd of this month after haveing bloods taken plus a ct scan and a heart scan also .
i just wondered if anyone else has anything like this or am i the only stupid one .
Stresshead.................lovely to hear from you. We were worrying and thinking of you, here amongh the skinnies, but also I know that you must have been tired on the trial, and visiting hospital etc. i'm so sorry that it doesn't seem to have worked, but at the same time I hope that whatever more normal treatment you are now given will get things stable. I don't remember your treatment history, so can't guess what might be there for you. I assume a visit to your onc is in the pipeline. There are lots of things out there, but as we all learn it can be hard to find what is right. We are all unique.
But so good to hear from you. Thanks for making the effort. I hope you feel physically better now without the trial ses. Try hard to eat. I don't have much appetite these days..........not bothered as much as anything, on my own........but I force myself! I know that I can get depressed if I don't get my vitamins! A little and often is what can work. It's my excuse for eating choccy biscuits! Take care of yourself. You are an example to us all. Thinking of you, of course,
Hello ladies, a major apology to you all for not posting for absolutely ages.for the last few months i feel that i have totally lost myself. After the second trial cycle my scan showd that the target area they were watching (didnt even thionk to ask where) had grown bt not enough to be classed as progression. However it was obvious that it was doing nothing to help my skin as it had erupted massively,.With this in mind and the fact that i felt so ill, it was decided to stop the trial. It was god not to feel so poorly bt so disappointing to know a real hope gone again and all that is left is a revisit to a standard chemo. Apparently tere are no current trials of any se to me. I am in a real dark place...i dont really see the point of it all. I am not interested in anything and if i was i am in too much pain to do it. I am now on slow release morphine with oral top-up bt its not really helping. I started the chemo yesterday and have another scan on Wednesday so the next few weeks will be very stressful.
Anyway,f i dont post for a while it is because of how i'm feling at the moment, it doesnt mean i dont think about you, as i do, all the time.
Take care, lots of love. xx
Lovely to hear from you Daisy. I think of you often, and your little boy. Your mum will be chuckling at him! I saw my little Anna (5 and a half now) a few weeks ago. We went to the playground together.........she zoomed off on her scooter, wearing her Disney princess evening dress and her tiara, with leggings and running shoes! Does your little one like Spiderman? He seems to be the boys' favorite according to Anna, but everyone's different! Take care, and thanks for visiting us.
Dbno........nice to hear from you too. I should say first of all that I am definitely living here in England.......down south in Bucks. I rather wish at the moment that I lived somewhere warmer like Australia, or Spain, or Florida.......or.........but ho hum I live here, with usual English springs and summers. But I always remember that whatever the weather we have such lovely long days in the summer. I love them.
Interesting that you don't have a bone 'plan'.........as in denosumab. I would have thought denosumab was a given whatever meds you might be on, including a trial. But they may leave it out for a time as it is supposed to have some anti-cancer effects on top of the bone strengthening. So they may want to separate that from the results, in theory at least. But I also feel sure that the effect of denosumab can continue for a long time even if you go off it, so if you were on it for any time you will still have the benefit. But as you say you must take this up on your next visit and see what they say.
But that is such good news about your clear skin post-Germany. There is something to their treatments and I wonder if those same treatments are being trialled here. Should be. And I think the NHS should be interested in getting feedback from those who have visited from here. I personally think that immunotherapy is the way forward in many areas. Our bodies are very clever but are wrong footed by cancer.
Take care all. I am going to risk going out into the chilly day. It looks innocently pretty outside, spring blossom etc, but there is a freezing breeze when I open the door! Love to all,
Good to hear that Giedre is back home after her visit to Germany. I must email her to catch up on everything.
Mo - I didn't realise you're not from the Uk - where do you live? How disappointing about the skin spot. I hope it's not a met. Since my visit to Germany my skin has been clear, it's just the rest that's gone pear-shaped. Even after selling my house I can't afford to go back to the clinic but really do have faith in what they do there. I don't know which of the immunotherpy treatments did the job - I must ask the oncologist if he has an idea which it was. I hope you get your scan and onc appointment soon.
I'm rather frustrated that I haven't been given anything for my bones and must get this sorted on my visit on Tuesday. They've kept changing their minds about whether or not Denosumab is acceptable while on the trial.
Stresshead - I hope things are getting better with your husband and dad. I can't remember if your trial is for immunotherapy but I was told it takes about 2-3 months to work. I'm sorry to hear that you're not feeling well on the trial. I'll drop you a PM.
Good morning to everyone else on the thread.
Thanks for your reply, Carolyn. Certainly it sounds as though Geidre's treatment is very personalised. But as you say we should be grateful for what we have here too. I have been stable for over 2 years on letrozole with denosumab, with a 13 year gap from primary. The lungs spots at the beginning disappeared on letrozole. But i also had some skin spots which were given radiotherapy last year. It seemed to work, but i have just noticed a small bump nearby. It is strange that the rest of me......bones now......are stable and unmoved, while the skin goes its own way.This seems common. The eventually radiated bump (very small) actually appeared during my first year, while lung spots disappeared and bones became stable. So I am not happy with the new skin spot. there is little development in skin treatment apart from radio. Onc may do it again, or sigh, glance at me, and wonder if it's worth it. Surgery raises eyebrows. There are no creams that are accepted. I intend to ask about freezing, which works for basal cell carcinomas. It is used in the US for breast mets. Anyway onc has brought my appointment forward from july + scan so will be seeing him soon hopefully..
i suppose Geidre is moving into Ozzie autumn now. The winters there can actually be quite hard, especially where she is, near mountains. Chilly here today, but some sun. Hail yesterday! But the sun is high in the sky and days are long. Take care,
Carolyn, thanks for remembering me to Geidre. I do think about her and the Hallwang treatment. It sounds as though it must be having good effects if she is still visiting. It's a bit (!) beyond me moneywise, and even the travel from here I would find tiring these days. Old age! But she is bearing up and hopefully it is all working. i wonder why the NHS hasn't started offering something similar here? Perhaps there isn't enough data yet to give NICE the support it would need. But treatments involving our immune systems etc seem to be the way to go with cancer now. Anyway, we are where we are. But I have learnt through BCC meetings that hospital trusts aren't even collecting data about the numbers of primary patients becoming secondary. I think there is something about it all somewhere here on the BCC site. Without that basic info I don't see how we can really hope for serious attention. Ho hum.
Anyway, thanks again & love to Geirdre. The Hallwang clinic sounds a lovely place, apart from the fact that they take all the secondary people who arrive there very seriously, and give them all a carefully individualised plan. I suppose we are on plans here but based more specifically on the characteristics of the cancer rather than anything more personal.
Enough! Enjoy today.......sun out here, but still COLD!
Love to all,
Stresshead........I agree with Carolyn in dending cyberhugs to you, both for now and for your upcoming scans. We are hoping that everything is going in the right direction. You have been so busy with hub and your father, but it is really good to know that they are recovering. Once they are better they will turn their grateful attention bick on you! It sounds as though you aren't too optimistic about the trial and its effect on you.........we are always thinking the worst.......so don't jump the gun and keep patient. (Who am I to say that as I know how hard it is.) The scans might be much better than you expect. But thanks for finding the time to log in here and update us as we all think about you and wonder how it is going for you.
We are back to winter which doesn't help anything......rain, wind and hail.......but improving next week, so do try to get out in the sun when it returns! All the best to anyone else on this thread. We are all holding hands and understand the strain of our treatments, scans, etc. I rang my onc this morning as a little bump has appeared on my;chest near my previous met. He's going to arrange an appointment, with a scan thrown in. He's calm and patient so I'm lucky there.
love to all,
Hi everyone, sorry for not posting sooner but have been kept busy with hubby and dad (who are both on the mend) and havae had neither energy nor inclination to do much at all. I havent really felt well since i started the trial and i dont think its doing any good anyway. I have lumps in my neck and what i think are lesions on my neck which rub on my collar all the time, so even more limited with clothing. Mets arent bleeding as much but not healing. Getting difficult to cope wioth the pain and discomfort. In fact finding everything a bit toigh going at the moment....maybe cos i havent been on here to get cheered up.
I'm back in London on Tiesdat and then again the week fter for a scan so will know more then. Hope yo are all keeping relatively well and sane. Love to all. xx
Dbno.........so pleased to hear that you are now under way with the trial. It must have been hard not to know until you turned up that you had passed the screening with flying colours! But I am glad you are on it at last. i have been checking in here watching for an update, so thanks for letting us know! Hope se's keep out of the picture.......you said so far so good.
So all fingers crossed, and sending very best wishes. Don't forget general health if you can........eating well, sleep, etc. Are you on your own or is it a group? take care and thinking of you,
Hello ladies - just thought I'd update you but firstly, movetothecountry, no, I haven't really had itching at night. I had some stabbing type itching when my thyroid started to go on the blink but that was any time of day.
I started a clinical trial on Tuesday. I didn't know till I arrived that I'd passed all the screening tests. It was such a relief to get started on some treatment as my breathing has become increasingly difficult over the last week or so. I'll let you know if I have any news on side effects or improvement/worsening of my condition but so far so good on the side effects front.
I hope you're all doing okay.
Hi Stresshead - hopefully your doctor and husband are right and the mets are improving. It's good that the sickness has stopped, I find that really miserable.
It never rains but it pours! Let's hope your husband is a fast healer and your dad can get home soon.
Sending you lots of healing hugs.
Hello ladies,, quick report on the trial. Things seem to be ok at the moment. i havent had any more sickness. I am very tired though and i have broken out in an acne-like rash, which is a common side effect...ugh!!!
The Doctor last week thought my back looked a bit better and my husband thinks the lumps have reduced but i'm not convinced. This last week my back has been extra painful, very sore and profuse bleeding. it has calmed down a little now...i just hope its nothing to do with the trial.
On top of my woes, my husband has just had a knee replacement so is out of action for 6 weeks....there goes my carer.!!! Also my dad is in hospital and has had a pacemaker fitted bt cant come home as he is too unsteady on his feet. All we ever seem to do is hit problem after problem. Anyway, hope you are all ok...this thread has been a little quiet lately. Lots of love. xx
Hi Stresshead - the tablet schedule sounds like hard work. Perhaps the headache and sickness were caused by having such a long and tiring day and being in pain. I do hope that was a one-off and that the tablets don't have any other nasty side-effects for you. I'm really glad that you've got started on some treatment. I always feel better in myself if I at least have a plan to work to.
Thanks for updating us.
Wishing you success.
Stresshead.........thanks for updating us. You've been on my mind. Anyway you are now up and running with the trial now so I hope it all goes to plan. The dosage schedule sounds complicated to say the least. i imagine it takes a lot of planning and keeping an eye on the clock! I think I would need some sort of alarm system! I fully understand about waiting around for the nurse..........it can feel so tiring. If I have to do that sort of waiting I find I just can't concentrate on anything at all. i just go into 'wait' mode. Limbo. But as you say it is just another thing to put up with...........ugh.
Thanks again. I am pleased now that you are on the trial at last. Let us know how you are getting along when you have the time,
Hello ladies, jst touching base to tell you i'm now on the trial. Had a very long day on Tuesday...left the house at 8am and got back at 10.45. I have 2 different types of tablets to take on different days. They have to be taken twice a day 12 hours apart but i can only have water for 2 hours before and 1 hour after so am finding it pretty dificult to hit on am optimum time. I was very headachey yesterday and was even sick, which they said is unusal. I feel a little better today so hopefully things will be ok. My back is now very sore: i have been waiting all day for the district nurse which is a real pain. If only they could give some idea on time it would be helpful..i dont like to moan when these folk are helping bt its such a waste of time, especially now i'm back on 2 visits a week. Oh well, moan over. Will keep you posted asto how the trial goes. Love to all.xx
Thank you ladies for your kindness and support.
Jacquie.....i have tries several different types of dressings. The favourite for me is Urgotul SSD, which is silver based to help fight bacteria and a top dressing of kerramax, allevyn of flivosorb. All of these were non-adhesive because of my bad skin bt now the mets have broen down on myback we are having to use biatain adhesive...its not too bad though. I started to soak the off in the bath for comfort bt the water disintegrated them ang all the gel stuff fell out so now try and grin and bear them being pulled off with the help of oramorph. There are loads of different dressings and i agree you do need some help....best thing is to see if you can get to see a tissue viabilty nrse and they will recommend the best thing for the ditrict nurse to use, then get your GP or hospital to arrange visits. Let sknow how you get on. x
Good luck tomorrow Stresshead. I'm keeping everything crossed that you have a good response to the trial.
Not sure exactly what you are after,,, but
Well, it was suggested to me that I keep mine dry and not have a shower or bath for about 5 days, because then, one is less likely.to get infections through the cut...itis obviously healing.
i have now had a few ops...and have been mindful of that advice.
keep the wound covered if its dressed. If not, keep an eye out for any redness or weeping..seek advice if worried.
Thank you stresshead. I've been wondering. Well, you are on your way! Good. It's going to be a busy time, with all those scans, blood tests, etc. You've had a long wait & deserve good results. It's an important trial. Thinking of you,
Hello skinny friends...just popped in to tell you that i start on the TORKMEC trial on Tuesday. Had to have eye tests, blood tests, scan and lung function test, then more blood tests and as soon as i start, another scan and more blood tests. It is two tablets, not familiar with the names yet but will let you all know how i get on. Been so long in the waiting bt hopefully it will pay off, especially as the mets are beginning to rampage. Hope everyone is keeping well. x
Hi movetothecountry - mine spread to my skin following one of the surgeries for the recurrence. I find it hard enough but I can only begin to imagine how hard it must be when you have a small child to look after.
I do juicing. The Mediterranean diet is the one recommended for cancer patients, particularly for TNBC. I haven't cut anything out completely but I've reduced the amount of dairy, red meat and sugary things. Also, keeping up with exercise is really important to mental wellbeing as well as your physical health.
J, welcome...sorry you have had to join us. I have had cape twice but unfortunately it didnt work for very long. Shame as i found it heard of ladies who had been on it for years. i too am TN. i'm sure it will be fine for you and there are loads of things for you to go at. You didnt say where you have your mets...do you mind me asking?
DBNO...do i know the lady who PM'd you who has had skin mets for 10 years? that really cheered me up.
Daisy, lovely to hear from you. Sorry to hear about your reflux problem. i remember my mum suffered with it for years and ended up permanently on Zantac. Fully understand your feelings about mothers day etc....try and think of happy times you spent with her and always remember how proud she was of you and how much she loved you. Drop in to us whenever you want to. x
Hi again J - I was PMd earlier by a lady who has had skin mets for 10 years, so your ears should be positively ringing now!
It must be incredibly hard for you with such a young child but there are many trials ongoing at the moment into new TNBC treatments and things have progressed a lot since my primary diagnosis in 2011.