Oh dear Belinda, I hope you managed to get some sleep eventually. You’re right, it is shocking how little is known about mets. I was told at the primary stage that I was very high risk of a recurrence but it’s no less shocking when it happens and reaches the incurable stage. It’s strange how they don’t class skin mets as stage 4 or secondary. And there’s so little information about it in such as the BCC site and other reputable ones.
X
Hi Bumpkin
Thank you for your message and suggestion re a ‘worried about secondaries’ thread. There is a board called Coping with fear and anxiety, where anyone with primary breast cancer can share their fears of a secondary or recurrence diagnoses.
Thank you all again
Best wishes
Anna
Digital Community Officer
Hi ladies
Thank you for all your replies and for the congratulations for my son… ?
I’m here again, wee small hours and wide awake with pain (think my sleeping tabs must have stopped working!)… I seriously need to take your advice bumpkin and get a nurse in who can give me pain management advice… Been awake in the middle of the night just adds to all the other probs we have difficultly dealing with in the day and makes them SO much bigger!!!
Stresshead - congratulations go to your daughter… She is a credit to you and herself… These things give us the fight to carry on… You should be a very, very proud mommy!!
I have today spent ages on next ordering very baggy tops and some loose vests… Hoping that this will ease my pain slightly… What is chloraphenical ointment?? And has it helped… How are you coping with the tax? I hope and have everything crossed that it is working or at very least stabilising your mets… I also agree with bumpkin and dbno - I think I remember you having a second opinion, but now might be the time to go back - my second opinion oncologist said I could go back to them at any time… Like bumpkin says your oncologist sounds so negative, we need them to be positive and proactive…
DBNO - I always love your view of pain meaning those little blights are being zapped, and it’s one I always bring to mind in my dark moments… Thank you for giving it to me!! I’m now getting pain where my lymph nodes mets are, so here’s to more of them being nuked!! I’m so sorry you are having a rough time… Just after dealing with your reaction to cape, you have this dreaded sickness:illness… It must be hard on you and your family/ friends… (((Big cuber hug)))) hope it is setting down now? Your post about the stupid comment made me laugh… We.should start a thread on here specifically for these comments, my tally seems to be rising as well…
Bumpkin - thanks for your advice… I’m going to speak to my chemo nurse tomorrow see if he can help re pain management… I want to say good luck for Wednesday… I hope you get onto the trial and that it is mega successful… I can appreciate it is daunting, but it’s only one step to take as they say!!! Deep breath and jump…??
I also agree with your comments about the pbc posts on secondary threads… I understand why they do and simpathise:. But I can find it insensitive (not sure that’s the right word - I’m sure it’s not meant that way!!) I think the prob may be as you say in the layout of the forum… a topic which makes it really clear such as ‘worried about secondaries’… Then us ‘secondary’ ladies could drop in and help out when we find it comfortable… ?
Just like to add – I’m with you on the pink and fluffy issue… And a big bug bear with me…, and when I have told close friends/family I have BC I just get ‘oh they can cure that now’ ‘oh that’s a good cancer to get’ … Public need educating…
Rant over and I’m sorry if I have offended anyone…
Marirose, Springsummer - hope you are both well… Hugs…
Janice - I hope things are improving. And that you are still checking this thread, I an thinking off you… Please post when you are ready ((( massive cyber hugs))))
Im due my 2nd (day 8) on eribulin tomorrow, but the couldn’t get bloods from my portacath, one X-ray later and it appears to tube is right in my left ventricle… Whoops!!’ So it’s gonna be hunt the vein tomorrow and another op!?
Good night - need to try to get some zzz 's…
Wolfie xx
morning ladies.
well, not in a good way myself. the carboplatin is obviously not workin and my breathin has got worse and worse to the point now where i cannot do anything except stay in bed. very scared. called my hospital and they are looking into sending me to a hospice for a couple of days to see if that will help whist they decide what treatment to start next,
waiting to hear from them - god i hate this!
SS
Hi SS
I am so sorry to read your post… Hope you are getting help now and that your team will be able to put a treatment plan in place to help and quickly…
I just wanted to send you loads of hugs, thoughts and best wishes…
Wolfie xxxxx
thanks girls. actually not going to a hospice yet as they need to visit me to assess me. hopefully they will come tomorrow. am seeing my onc wednesday week but they will have a meeting about me tomorrow to decide the best way forwrd so i will not have to wait fro the next chemo. Ho hum. It means a lot that i can reach out to everyone here and get support from people that really understand and are not embarresed or arkward. xxx
Oh ladies…what is hppening to us all? we seem to have hit pain and problems all together.
SS…so sorry to hear yo are still having breathing problems…lets hope the hospice put you right.
Everyone, thank you for your concern…i really need your support at the moment…have just got my letter from my last onc appointment. Basically he has said, chemo’s not working, antioestrogens not working, mets beginning to ‘fungate’…what an awful word (means Ulcerate), no point in doing biopsies (so i wont know whether i’m er+ or trip neg so how can they plan treatment?) radiotherapy and electrochemotherapy unlikely to work and i’ve been told that this is a very difficult tumour to control and that it will soon spread and get out of control…basically i’m finished!!!
I have spent hours researching different treatments and still seems there are several to go at but apparently not??
i have again asked for the biopsies to be done and i have asked my gp to write to my onc for a referral re :electrochemo. I have got to ring the oncology unit on Fri but dont see my onc till next thursday.
To add to the mix, my mets have now begun to leek and weep. I went to the breast unit and the told me to leave uncovered as much as possible. They gave me some non stick dressings but they have stuck anyway.
Wolfie, the ointment i mentioned, chloraphenicol 1%, is actally an eye oiontment that the breast unit use after surgery. It stings a bit but it did help a little. If things dont improve i’ll ask abot a macmillan /specialist nurse.
Taxol so far ok but not sure its doing anything. I am very tired but my hair hasnt fallen out yet and my bloods are fine (my psychologist did say yesterday that it really hits after first cycle so hopefully it’ll kick in). Dont want to go bald again but if it means the stuff works then thats the least of my worries.
Bumpkin…i have had second opinions, the last one at the Marsden and came away with much hope which has mainly been dashed with the query over whether i’m = or -, and the fact that this is spreading so quickly. Can i ask which trial you are up for?
I was told to look locally but not really sure how to go about it…should my onc tell me if theres anything suitable or do i have to contact hospitals myself?
I’m sorry to be so negative ladies when you all have enogh to cope with and i thank you all for listening.
Love and hgs to you all.xx
dear stresshead
what can i say? i think looking at clinical trials would be a good idea. not all hospitals do them, i know the marsden does and the hospital should put you foward for them. i know there are some immunology trials coming up - the marsen told me can you talk to your onc about them or go and see the marsden? The guy in charge of breast cancer trials at the Marsden initials are NT. - look him up. I know how scary all this can be. I an on citalopran to help with my anxiety and it does seem to stop me worrying too much. I am stuck in bed now unable to dfo hardly anything. they have decided on eribulin next for me. whilst you’re waiting huge cyber hugs going out to you xxxxxx
Hi Stresshead…
I’m so sorry to read your post… And the way they are treating you just doesn’t make sense… Like everyone has said surely they need to biopsy the mets to ensure you have the right treatment plan!!! I would definitely ask to go to one of the centres of excellence - either the marsden or the Christie.(I know you have seen someone before but you need them more now… And you have that right to a second opinion)… Your oncologist sounds so negative. There is a professor at the marsden who specialises in tnbc (if that is what you are!!) and has set up a specific unit researching into this sub type (funded by cancer research)… I would ask to go and see him, I don’t know about trials but he is the leading oncologist in the field so should know about availability… I’m sending you biggest bear cum cyber hug possible (((((((((((((HUG))))))))))))))))
SS - hope you are feeling abit better today… Sounds like a like your team have more fast and that you are starting eribulin… I had my day 8 cycle 1 yesterday … Not feelin too bad at the moment!! I hope they get your under control… I also find that the most destressing symptom … Hang on in there!!! Big hugs to you as well (((((( HUG))))
I’m having an operation tomorrow… The wire off my port-a cath has decided to play funny bu**ers and has gone right the way into the left ventricle of my heart… Just sitting in the bottom of the chamber… When the nurse tried to draw off blood she was actually vacuuming the bottom of my heart!!! Yuk!! Surgeon never heard of it before!!
Wishing all the best to everyone on this forum…
Wolfie xx
Hi everyone sorry I have not been posting but I have been keeping up with your posts. I have been in a dark place for the last 2 weeks. But it is nothing compared with what you are all going through.
Hi Stresshead hope you are feeling a little better you really are on the edge I wish I could help you my heart goes out to you and Cyber Hugs are coming your way. I was pleased to hear your daughters success and I have to say my eldest son did his PGCA and has never looked back he married a girl on his course and they have a very good life.
Hi Wolfie congratulations to your son you must be so proud. I hope the Eribulin works for you and regards the advice about the none electrical appliances it’s good advice. My first chemo 19 years ago made everyone lose hair the nurse couldn’t understand why I retained mine I told her I kept my hair short and used no elecrical appliances on it don’t ask me what chemo it was they proberly don’t use it anymore.
Hi DBNO best wishes to you on your Eribulin I hope it works for you too
Hi SS I do hope you are feeling much better and your breathing has settled down now
Hi Bumpkin I do hope your pleurisy is much better now and the steroids have helped to give you some strengh. You are so knowledgeable and you have helped me.
To Belinda Janette and anyone I’ve missed my love goes to you all xxx
Good morning ladies…I seem to say “I hope” a lot but I’m just going to stop worrying about
Marirose - I hope you’re feeling less in that dark place.
Bumpkin - I hope you’re not too exhausted and that yesterday’s results have identified a suitable treatment.
Stresshead - please don’t feel you should apologise for sharing your feelings - that’s why we’re here, to help each other in dark times and celebrate when something goes well. Have you got any further with your quest to get the biopsies? I found out the hard way not to just accept what your onc says and to fight for what you believe you should be getting.
Wolfie - I hope your op went well and that they’ve got your portacath under control! How are you feeling since your day 8 Eribulin?
SS - I hope you’ve managed to get up and about a bit. When do you start Eribulin? I’m finding it not too bad so far, other than when I allowed a headache to get out of control which resulted in vertigo and vomiting and a night in hospital, and my neuts were too low for my day 8 so it’s postponed till next week (if you get a headache, take a painkiller to stop it before it gets out of control). That’s interesting what you said to Stresshead about immunotherapy. It’s something I’ve been looking at and keep checking the CRUK clinical trials to see if there’s anything up and coming. It sounds very promising. The Marsden’s website has had a fault so I haven’t been able to look it up on their site, but I’ll keep checking.
Janice - You’re in my thoughts.
Hello also to Belinda and anyone I’ve missed. Sending you all my best wishes.
x
Hi everyone has anyone got skin mets that look tiny bubbles rather than pink spots I have got quite a few between both breasts and below the others under my chest wall tumour. I’ve tried to google but can find nothing only the normal mets. Onc keeps saying she is not too worried about them they are nothing to do with the rash I had which is almost gone now. I’m feeling quite cheesed off with it all but I’ll battle on.
I do hope you are all doing ok and the new treatments are not upsetting you too much you are all in my thoughts quite alot (((((Big Cyber Hugs to you all)))))
Well, am now in hosptal had to be taken last thursday as my breathing got so bad could not get out of bed. They have done a drain to my lung so a bit better now. Treatment was canceled yesterday and should now be starting it next wednesday. am trying to organise some interim care in a hospice or somewhere until i can look after myself again- hopefully once the treatment starts to wrok. They are looking into it in the hosptial but I don;t feel that confident anything will be found. Luckily my brother has come over for 6 days to look after me and friends are all popping in to rally around. Still dark days for me at the moment and feeling vulnerable and scared… much love SS
if you are at the marsden i’ll wave xxxx
Hi Bumpkin
Thanks for making me feel a little better but I am so sorry to hear how yours have spread to other areas and I do hope the trials will be successful for you it will be interesting see if it could be a break through for TN Breast Cancers. I bought the coconut oil but have not been able to try it on my invaders yet as I have the dressing covering most of the orginals although I could use it on the new ones. The dressings I am using are Allevin Life with a dressing which looks like netting called Atrauman they seem to be healing the two ulcers apparently it is allowing air to get to the wound. The nurses are helpful and are getting the dressings on prescription which is more than I could say about the lady Doctor I saw. I thought it would be better to get help from a woman but she shot out of the room came back sent me to the practise nurse and not a word. I couldn’t believe what had happened. When I told the nurse how she had been she said the Dr didn’t like wounds needless to say I will not be seeing her again.
Anyway keep us informed how you get on with the tials good luck
SS sorry things are rough for you at the moment how lucky you are to have your brother stepping in to help you. Hope you soon feel better
Belinda I hope Eribulin is kind to you
Sresshead Wolfie Janice and DBNO also anyone I may have missed out thinking of you all xx
Hi Ladies
Sorry I haven’t been on here for a while… I’ve been busy running round after my boys… Just got back from London, having taken them to see England play at Wembley!! Hampton Court palace, The Eye, London Dungeon, Science Museum!! Not sure how I manged to do it all with the fatique we all suffer as a SE but I’m absolutely determined that my boys won’t suffer this desease as well as me!! We had an absolutely brilliant time…
I’m so sorry to here that some on here are having a tough time at the moment…
SS I hope your brother is here now and looking after you… Hopefully you are feeling better?
Marirose… My mets are just red rash, leather texture… We all seem to have mets of varying appearance…
Bumpkin - I’m so pleased that you have got into the trial… Hoping for impressive things for you… I think I’m going to ask my onc about testing for tnbc type and if any trials…
Stresshead - I notice you havent posted for a while… I hope you are still reading this thread… I am thinking of you …::
Dbno - hope the eribulin is treating you well…I’m due my second cycle on Wednesday… Not too bad in the SE at the mo!!
Anyone I’ve missed I’m sorry - I’m thinking of everyone on theses threads and wish everyone the best…
I’m at the onc on Wednesday… On my own again!!! So any virtual hand holding will be appreciated …
Wolfie xxx
Hi ladies, i havent forgotten you all bt have ben a bit bogged down recently. Just to let you know i am having repeat biopsies done tomorrow and my onc has now agreed to refer me for an appointment to discss electrochemotherapy so there is a little progress. I’ll catch p with you all as soonn as i have some news but in the meantime thank you all for your contined support and i hope you are all as well as possible. Cyber hugs to all.x
hello everyone
hope everyone is doing as well as can be expected. stress - sounds positive moves for you. well done for getting it organised i know how difficult it can be to get things done on the nhs. hats off to you. wolfie you sound great on eribulin. i’m startin mine sometime this week so hopefully it will go well for me as we… still at home in bed with my perfect brother who is looking after me like no one’s business. i feel great with him here, he has to go back home to spain tomorrow but have another friend coming from edinburgh to stay for a week to take over. thank god for friends! after that hop[ing to feel better with the eribulin although they did say it could take up to 6 weeks to work. anyway ladies reading through the posts the impression i get is what a strong amazing bunch we are! things we endure and orgainse and enjoy whilst going through this feels me with awe - about myself as well by the way!!! i think we are amazing
Hi everyone how nice to hear from you all
Wolfie how brave you are to take on such a task taking your boys to London and doing all the things you have done well done girl.:womanhappy:I am virtually holding your hand for tomorrow I hope everything will be o.k:heart:
Stresshead so good to hear from you things seem to be happening for you I am not familiar with the elctrochemotherapy it will be interesting to know what you find out about it. You sound more positive lets hope your team can keep you that way I shall be waiting for your update:heart:
SS you seem to have so many helping hands to look after you. Sorry your brother had to go back he sounds like a relly nice brother to have. Hope you are breathing much easier now and good luck with the new treatment :heart:
Bumpkin wishing you all the best with the trials.
DBNO Belinda Janice and anyone I have missed love to you all:heart:
Hello ladies - thanks for your good wishes. The Forum’s been a bit fickle again. It wanted me to enter my password to reply yesterday but then wouldn’t accept anything again. Today it has let me straight in.
Wolfie, Stresshead, SS - may I just reiterate what Marirose has said.
Bumpkin - I’m not sure which day you start the trial this week but if you’ve started it, I hope it’s going well, and if not, good luck. It will be so interesting to hear how it goes.
Marirose - how amazing that someone would choose to be a doctor when she doesn’t like wounds! I hope your mets are improving now you have the new dressings. I put cocoa butter on the skin on my arms because it had gone very dry but I had to fight off my brother’s dog who seemed to think it was something to eat.
Belinda - I hope things are going well for you with Eribulin.
Best wishes to Janice and anyone else I’ve missed.
Having missed my ‘day 8’ doses twice so far I felt so well I managed a weekend at home. It was bliss. My hair began falling out on day 15 again. Looks like I’m going to be bald again for another winter. Getting my bloods checked again tomorrow so finger’s crossed I’ll get the treatment on Thursday.
Good night. I shall check in tomorrow to see how everyone’s doing.
X