Thank you Moijan for your really lovely message. It is good to know there is some light in this darkness. My cough was there already as I have lung Mets. I’m really hoping Cape can shrink the little buggers which will mean the cough will also go.
Thank you so much for all your support. How are you getting on? Sending you a big hug xx
Hi Abney,
thank you for asking, just currently, im apparently doing very well on Eribuln…
But I would much rather be a Cape or a Letrozole lady, as 2/3 weeks Im attached to a drip for the drug, it only takes 30 mins max and usually im out of there pretty soon, but I miss being able to just go away for as long as I like. Cant plan holidays etc. and not really willing to take time out in case the cancer gets resistant.
i know im pretty blessed really, as things are chugging along.
I hope you are feeling a little better? And Karen too? Time seems to help us adjust and of course we are all here for each other which I find really nice…
love and hugsxx
Moijanxx
Hi Abney
yes have heard sbout immunotherapy, its early days yet. I think its a bit like using a vaccine, ie finding the driver cels, growing them outside the body, and altering them somehow so they attack cancer cells, but could be wrong!
i think the Marsden may be one of the hosps looking at it, but am not sure. Im also not clear as to which cancer types its best for, ie, large concrete tumours or wether it also targets wide spread tiny mets…I have both in my liver.
you could look on Cancer Research uk and look at the trials bit, see where these are… My guess is you might have to pay for it at the moment…but it spells out hope for us all.
so glad you have a good friend like that one you mention, I hope you feel a little better?
love, Moijanxx
Ff, I know you are right, but if the cancer gets resistant, not surewhat else I can have! They wont give us Ibrance…too expensive. Im just trying to get the best mileage from the drug, ive had three drugs get resistant and its spooky, as you know.
moijanxx
ps they got resistant after a break each timexx
Hi MarleneRose, nice to hear from you. Sounds as if you have been having a tough time. Its nice to hear tho that you have had some success with the chemo. Sounds as if youve done well with such a long history.
I am doing quite well on Eribulin, just now, but that too is not a cure either. I do quite a bit of praying too.
Abney, hope you are feeling a bit better and are having a good weekendxxx
hugs, Moijanxx
Hi Abney, i have tried to look into immunotherapy but seems to be little to go atr at the moment. I am triple neg mets to skin, pleura and bone but there may be something for you in the trials line. I think it is still in its infancy although i know palces abraod seem to be using immunotherapy but as they are private it is very very expensive!! Awful to think a lot of the time our lives depend on money and budgets etc. Will keep looking into immumo and if you do and come up with anyhtinga let us know. Keep your chin up.
Marlene rose…thanks for sharing that you have hsd mets for 4 years…gives us all hope. Wish i could do as well as FF with 11 years!!
Moijan, i too am worried about chemo breaks…as you know i’m on one now. Everything they have tried before has become resistant so i just hope thats not the case with whatever they choose to try me on next. Trouble is i’m already at the ‘re-visiting’ stage so it doesnt sound to hopeful.
Karen, hope you are a little more settled now and coming to terms with things. If i’m honest i dont think you ever do…you just learn to adapt and live with it. Sending you and everyone love and hugs. xx
Hello sue
Sorry you haven’t received any replies …it’s quiet here at the moment …it’s half term and lots of younger ladies with kids to entertain!
I’m.not triple negative like you but do have extensive bone Mets which like you got overlooked for a year …I had hip pain and was dx with arthritis, sciatica and nerve damage etx etc and as my primary was eleven years previously …was missed. By the time I got the scan …I had a cracked pelvis, hip that was like honeycomb and a hole in femur which meant a emergency op for a pin to be put in to protect it from all collapsing !!
Anyway 15 months later I’m still here and on leyrozole and denosumab bone injections.
I don’t take any pain relief apart from a hot water bottle sometimes !!
I’m afraid its the new way of life and we being women …just get on with it !!
Anyway welcome to the forum and you will find a lot of kindness and support .
Carolyn xxx
Hello sue
I hope that more ladies reply and help you through all this …believe me there are lots of ladies like ourselves that got overlooked with our aches …I must confess I didn’t push much at the time and just kept popping paracetamol as we were moving house and then I sort of put the hip pain on the back burner so I must accept I was partly to blame !!
As you are triple negative …hormone therapies like letrozole and tamox etc won’t feature in your treatment so hopefully the denosumab will keep the bone Mets under control but then there are lots of chemos that can be called in at a later stage if you need them. I call them the big guns !!!
Anyway …hopefully you will enjoy this forum and maybe join in the private thread and we have games, gardening clubs and all sorts running …even a book club.
There is a thread called bone Mets …please join in …we " metsers" all meet there for a lot of banter and fun …as well as the serious stuff !!
Carolyn xxxxx
Hi sue,just wanted to say hi and welcome…we wish you weren’t having to post on here of course but you will find a wealth of support.you are already being inspirational with your amazing attitude.I am a glass half empty person but people like you do make me buck up,even though I relapse a lot.I was diagnosed in 2011 and in Jan 2014 went to my go cos I had a small lump in the sternum area. I was told it was a sebaceous cyst.this was also echoed by my Inc and breast surgeon until the July when it was finally confirmed as skin mets. Not one of the had an alarm bell ringing saying ‘biopsy now’!! I was originally er+ but changed to triple negative and was only told about that 6 months later. Oh how I wish I had shouted loud then like I do now.look forward to reading your posts.xx
Hi,
On my third anniversary of my 2014 diagnosis of primary bc I went to A&E with severe pain on my right hand side, and I have been diagnosed with secondary cancer on my liver. I’ve spent the past few days feeling numb with shock, then following blood tests was admitted to hospital with very high calcium levels which my oncologist believes might be bone mets. I’ve had no bone pain, and my ct scan shows liver mets (lots) and lymph node enlargement in my sternam. My oncol can’t see any indication of bone mets on my ct scan, which she says is unusual, but a bone scan is booked for Tuesday. Everything is happening so fast. I have my port fitted on Wednesday as my veins are so bad from last chemo, and then chemo on Friday.
I am so scared (especially when the pain is bad). I’m trying to be positive and just get on with everything, but inside I’m dreading all the chemo and the feeling awful again. I’ve been offered counselling to help with processing it all. I can’t bear to see my family go through the strain yet again. My daughter is just about to take A levels this summer. I don’t know if I’m posting in the right place but any info on the treatment SEs much appreciated.
Hi Everyone
My name is Lin and I was diagnosed with secondaries in my lungs, liver and bones yesterday - in a state of shock as I was 10 years this year from my primary breast cancer - so so very scared. See oncology on Monday. Abney my heart goes out to you xx I am also in pain and can’t believe how quickly this all seems to be progressing. No matter how lovely everyone around you is they can never know the incredible fear you feel. It must be so hard dealing with your little boy on a day to day basis and trying to cope physically and mentally - I hope you have lots of people around you supporting you. My children are 21 and 24 and away studying and the thought of telling them breaks my heart. I am sorry I can’t give you any advice but like you I am just at the beginning of this journey.
Hello ladies, no longer the newbe on here and it’s only been two weeks since I was diagnosed with secondary mets on pelvis and hip. Just goes to show the frequency of this unrelenting disease but each day we are here is a day closer to finding a cure! Abney, I have no advice or words of reassurance but I do know you need never apologise for saying how you feel, good or bad! I’m still getting to grips with replying to posts on here as I constantly feel confused and make the most simple errors in everyday life. I went into the school where I work on Friday to hand in my sick note and the children were so wonderful and pleased to see me, it just boosted my mood immediately. For those couple of hours, I forgot my pain, illness, fear, and looked at their work, received endless cuddles and felt positively alive for the first time in weeks. We have an autistic base and my dear friend has an autistic son. He is now an adult but as a small boy, life was terribly demanding so I can empathise with your concerns.
I hope you have a good family network to offer you a bit of help, although it’s hard for anyone who has not experienced tnbc to fully grasp the fear that secondaries bring.
Thinking of you and wishing you the strength to fight once again! Hopefully someone else can offer you peace of mind with regards to your headaches.
Hi Sue and Paula…sorry you bothhqve had to join our very select group of ladies with secondary mc.
yes, it is a big shock.isnt it? I, like you felt at crisis point when I was told. After a short while…you will be able to throw yourselvesinto your treatment plan…with Gusto.
seems. We are all resilient and can adapt to our newer staus within a short time xx
hopefully you will feel more enthusiastic and mch more in control…love and hugs, Moijanxx
???
Hi Lin and Abney, and all the ladies on here.
I agree this is all happening so fast. I was diagnosed on 15th, and since then I’ve been in hospital with hypercalcimia and feeling ill with the liver mets etc.
I’ve been having an okay day today, but have now terrified myself. I looked up hypercalcimia and I’ve read that it is associated with poor prognosis and I may only have weeks. I’m in such a state. I’m due to start chemo on Friday. But this all seems to be running away.
Does anyone have any experience of hypercalcimia (sp?) before starting treatment, and have any positives I can hang on to?
Abney, you and I had our primary in the same year. I really hope you’re feeling a bit better. I’m getting headaches too - but I think that’s simply anxiety. I’m okay during the day then at night I just lie awake. I hope some of the ladies who’ve had that drug can help xxx
Fi
Hello lollymum
Like moijan …I had to Google hypocalciimia as I didn’t know …one of the causes can be denosumab injection …are you having that ?
Sending lots of love xxxx
Hello lovely ladies thank you for all your kind and supporting words. This thread has really grown and again I apologise for not joining in. I have had a rough few months. Ended up in hospital for the 3rd time a couple of weeks ago. Always with fluid on my lungs:( at Christmas I was in for two weeks with a massive clot on the lungs too! They now have put a semi/permanent drain in and I have a district nurse out every day to drain the fluids. My breathing is still terrible, I’m in a lot of pain so snorting the pain relief! But coughing loads and really congested still. I have no energy which is depressing and my heart rate is crazy. If this current drain doesn’t help my breathing they are talking about a procedure on my heart as I also have fluid around there! I don’t do things by half!!! Had some scan results back last week and the pacitaxel hasn’t seemed to work on me although I only had a few sessions. It seems the cancer is very active and causing the plural stuff so I start eribulin tomorrow. My 3rd chemo since October! I’m worrying they are going to run out of options. My onc is saying he has other options and in around 6 months he said immunotherapy should be available so going to put me forward for that. He has also said that I could return to pacitaxel in a couple of years time but he doesn’t want to wait now and just wants to find the right drug for me before I get really ill!
I was meant to go back to work last week as I was actually feeling ok when I came out of hospital after Christmas but that’s all on the back burner again!
Today the Macmillan nurses are coming to visit me from the hospice which does upset me a little as it makes me think is that it for me? They all are saying it’s not about that but to be able to offer me any support I need be it pain relief, rest bite help with my boy. Will find out more today. My mum coming back to stay with me today whichbis a great help and support. I feel bad that she does so much for us and I can see her heart is just breaking seeing me like this.
I do hope all your treatments are going ok and wish the new ladies lots of luck. Sending lots of love and strength xxxx
Ps Funny face you are my inspiration. I always mention you when I talk to people about my lung mets. Xxx
No I’m triple negative unfortunately so can’t have the hormone treatment. I’m hoping this new chemo will do the trick as none of the others have helped. The fluid is awful as I just feel like I’m drowning:( xxx
Thank you Lollymum for your lovely message and I want to send you a gentle hug too and wish u lots of luck for this week. The nurses came today and I felt so depressed as it did feel like they were talking more about the Pallative care. At one point they asked me about end of life and I said I’m not ready to talk about that yet!! I know where this goes but while my medical team are trying to treat me I’m clinging onto that! I also was quite against the idea of having a comode! I know they trying to make life easy for me but again not ready for that!! They have upped my morphine so hopefully that will help with the pain. Their visit did get me down and the relentless coughing hasn’t helped! I just need to get my positivity back and really hope this chemo works!! It has got to! Big hugs to u xxx
Hi, Lovely ABNEY,
here is your passport to the 'Chemo Buddy Needed…Anyone on Eribulin ? '. Thread.
keep your sponge handy, your nose clean, and very best. Best, BEST wishes for an excellent
result on Eribulin xx
