Breast Cancer Care Forum

Hello ladies, feel awful for seeminh to dessert you especially whn we have some new peopt a lot has been happebing here...not good thouugh. It seems i have nohe stage where i a too ill for trials and my mind and body arent strong enogh to cop with what little treatments thee are left. I have ben given abot 3mnoths. My daghter has also decided she wants to get married while im still here so we have awedding to organise in a month. Lovely of her but we are in such a spin. I will try and read back to my last post and also post again but at least now yo understand the delay. Lots of love.xx ... View more

Hello ladies, still not feeling 'great' but wanted to say helo and welcome to our new friends, although i wish you hadnt had to join us. I cant really add more than the other ladies have done, suffice to say that my skin mets started as a small lump in the sternum which was mistaken for a sebaceous cyst for 6 months. Other spread has started with a red rash and severe itching .  I now have extensive mets across my abdomen chest , neck and back with lots of weeping and ulceration. My primary BC was er+, her-, but my secondary is triple negative and has now spread to my bones and pleura. I have had it now for nearly 3 and half years and have gone through all the chemo options so much so that i am now revisiting the one i was given originally. I have also had electrochemotherapy. I have recently been on a trial and that failed. Add to tjat i too have got lymphoedema......dont seem to have any luck with anything at the moment. There are loads of treatments for you to be tried with and once a plan nis in place it makes you feel much better.. I hope i havent scared you too much but just wanted to be honest.. I havnt been posting much lately but if theres anythong yo think i can help you with please post....i promise i will try and sign in more regularly. Love to all. XX ... View more

Dearest Julia...how i will miss her. Fly high with peace and no pain. xx ... View more

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 ... View more

Hi Han, just wanted to say hello and welcome. i too am TN recrrence in skin, plera and bone. I have gone through virtually every treatmnt there is and am now on trials but it sounds that you have already found a good treatment. there are loads out there so try not to despair. I too worry about the life expectancy thing but having recently found that my cancer is genetic i am far more concerned about my daughter. Keep posting and ask anything you like, there will always be someone with an answer or just a friendly 'hug'. xx ... View more

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 ... View more

Lizzie, so glad to hear you have a treatment plan in place. I'm sure you start to feel better in no time. Fingers crossed for your scan results. xx ... View more

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 ... View more

Angela, fully understand how you are feeling. We are all holding yor hand. Please let us know how you get on. As both you and movetothecountry are in our 'skinny' group, please feel free to look on the subcutaneous mets thread. There aren't that many of us and its great to have shared info in one place. Love to all. x ... View more

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 ... View more

I'm sorry i havent really been able to help you much. All i can say is that i havea daughter who is 25 (i'm 53) and i would do anything to stay with her. Itis getting harder to keep trawling through treatments and it does catch up with your body eventually. The last thing your mum would want is to cause you extra worry...i cant begin to tell you the guilt i feel for ruining her life with this (even harder as i have just found out it is genetic and she has a 50/50 risk). I know, despite all this , that she would not want me to suffer any more than necessary when the time came and would accept my decision however hard it is on her. Whatever your mum decides, it will be out of love for her family. Easier said than done but try and stay strong and whichever path she chooses you will get through it. xx ... View more

Sesame, forgot to ask if your mum as breathless or in pain from pleural effusions? if so, has she been given a chest drain/pleurodesis? The procedure is not at all pleasant but do-able with pain relief and the pleurodesis is a procedure to stick the pleura together so the fluid cant build up again. Itmay make her more comfortable in the long run. I also use topical creams for my skin mets...jury is out on whether they are doing any good but certainly not making things worse. I am under a dermatologist and my onc agreed to let her prescribe efudix (which is fluroracil, a chemo) and aldara (imiquimod, used in skin cancers). x   ... View more

Sesame, so sorry you have found yourself in this awful situation. I havent been there but i have had a similar experience. My secondary breast cancer came back in my skin, then hit the pleura and bones. In the beginning i wanted a second opinion and went to another hospital where another NHSdoctor upheld the views of my oncologist. I was doing a lot of research and came across the name of a Doctor who i wanted to get in contact with. My GP sent a letter but i just got a letter back saying what i had been told was correct and there was nothing he could do different. Not content with this we paid to go and see the same man privately. He was very encouraging and said there was lots to go at in the hormone and chemo field and recommended a particular treatment. As it turned out i couldnt have it because i had mutated from hormone positive to triple negative...something that had shown up on a biopsy 6 months before but no one thought to tell me.(I was misdiagnosed in the first place  for 5 months and not treated for 6...who knows if i had had treatment straight away what the outcome may have been???) I cant comment on your mms prognosis but at 60 she doesnt seem to old for treatment and believe me, when its actually happening to you , you will do anything to survive. I have loads of chemo's including carboplatin and cape but am now at the trials stage as there are very few options left. There is the possibility that the private route is a money-spinner rather than a viable option to help but who knows, It is a terrible dilemma. If your mum wants to try further treatment all you can do is support her in any way you can. I am sure she will know in herself when enough is enough. There are no easy answers but i'm sure others will be along to offer advice. In any case, we are always here to support you and your mum whenever you need us. Good luck. x ... View more

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 ... View more

Hi Littlelizzie, you are not alone, i too have pleural mets. I started with really severe breathlesness to which i had to submit and go to A&E. I had pleural effusions and had to have a chest drain. I dont want to frighten you or anything .... it wasnt pleasant but it did help. I also had pleurodesis which is like a glue which seals the lung and the pleura so the fluid cant build up again.   The first one didnt work so i had to go through it all again but that did seem to do the trick.  I had oxygen and oramorph and am reviewed regularly . I do need oxygen still on exertion (but that rarely happens!!). I am now almost a year on and amy scans since have shown no progression there (i also have bone and skin mets). I'm sure once you see your oncologist you will feel better...lets hope its not too long. Your partner will see you trough this just as he stood by you before but remember we are all here to lend support. If theres anything i can help with please either post or PM me. xx ... View more

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 ... View more