Breast Cancer Now Forum

Thanks, nicky08. I've decided to go with the Fulvestrant trial. I have a three week treatment gap (for the other stuff to get out of my system) - which feels a bit odd and makes me rather anxious. However, hopefully the trial will then get going. I'll then know if I'm on the 'just Fulvestrant' arm of the trial, or will also be having the other drug (which is as yet unproven for breast cancer). Thanks again. xxxx ... View more

Thanks, everyone .... I really appreciate your responses xxx   ... View more

Thank you for the responses and support. I am preparing my advocacy messages for my oncology appointment tomorrow and will see how things go!   Thanks again xxxx ... View more

Hello everyone. I was just wondering if I could get some collective insight into experiences of taking Palbociclib and letrozole.   I have been on this combination since I was diagnosed with stage 4, secondary in bones, in September. I am currently in a ‘limbo’ phase – of taking the drugs, but not knowing if they’re working until a scan (in a couple of months, I think). The challenge that I have is that – while desperately trying to stay positive and believe the drugs are doing what they should – I have an increasing amount of pain in the very places where the original scan showed the cancer (right breast, breast plate, neck nodes, etc.) ….. so I find it hard not to fear that the cancer is actually increasing rather than decreasing.   I have an oncology appointment on Monday, so am just thinking how to articulate my concerns and what questions to ask.   Do others have experience – positive or negative – of the first few months of taking Palbociclib ….. in terms of indications of whether it’s working?   Love to you all xxxx ... View more

Hi Lisa MP .... I am on Palbociclib and Letrozole. I'm only recently diagnosed, so started the Palbococlib through the scheme paid by the drug company just a couple of weeks before the NHS announcement for it to be free to all who need it. Whatever the payment arrangements, you have the right to know exactly what the oncologist meant and why she said it. Was it a clinical mistake ... and, if so, what and why? As a non medic, I don't know the precise details of the cancer profile for which Palbociclib works .... so perhaps it is simply not the right drug. However, being taken off any drug that is associated with the hope of improved and extended health is a very, very big deal for anyone .... so I feel strongly that your mum is at least owed a full explanation.   Sending love and wishing you well   xxx ... View more

Juma ..... Wishing you all the very best for the second opinion. In my first oncology appointment, I just sat there and listened - I think I, too, was just in shock ... not able to process the information, let alone ask anything or take any decisions. In the second, I worked through my list of questions, despite feeling a slight impatience from the oncologist. I have my third appointment on Monday, with the results of the new scan - and will go armed with a new list of questions. I find it hard to be strong and articulate, at a time when I feel desperately vulnerable .... but I think it's just what we have to do ... to have some sense of clarity and a modicum of control. Sending you love xxx ... View more

I agree ... it means the world to me to read these comments and sense the solidarity.   Juma - sending you love and support. I sense that these early days of diagnosis bring their particular challenges. Apart from anything else, I feel plunged into a world of unknown vocabulary and processes - within which it's incredibly difficult to have a sense of control. Everyone is different and needs different things, but, for me, it will help to have the new scans done and have more information, whether good or bad - as my own mind is not my best friend right now. Thinking of your.   xx ... View more

Thanks, everyone. Having only been diagnosed in September and been completely fine until then, I find the severity and unknown of my disease and situation pretty much impossible to get my head round .... not knowing if any symptom I now feel means 'this is it' and I'll be checking into the hospice or whether it's about adapting to a new kind of life and having a few or many years to go. I have no idea how you're supposed to cope with that. I know some things can help - like I'm having a new set of scans done this week - but, even so, the unknown is just too much. And, yes, people have the best possible intentions, but don't always help. The 'breast cancer is one of the best cancers to get' and 'I have a friend who had breast cancer [stage 1] 20 years ago and she's fine' comments. I absolutely don't want to become someone who isn't empathetic to other people's diagnoses and difficult circumstances .... but I also need some understanding that I've been dealt a particularly harsh hand of life's cards right now and I need people to listen and understand without me having to repeat horrendous information time and again. xxx ... View more

Thank you, Moijan ... it's so powerful to hear other voices. I just worry that, at the moment, my fear and panic are so strong I can't offer anything to others. However, it means the world to me to not feel alone. Thank you xxx ... View more

Juma ... I just want to send you love and solidarity. I, too, was 'straight to Stage 4'. In September, I was absolutely fine, with no symptoms and just found a lump in my neck ..... then, scans and biopsies later, here I am with a diagnosis of BC, secondary in my bones and various lymph glands. I am going for a second set of scans this week - as I now have symptoms and the oncologist doesn't know if it's that my treatment (letrozole, palbociclib, denosumab) is stirring things up, or the cancer is getting worse. To be honest, I find it almost impossible to control my fear. However, I've just started going to a Macmillan counsellor and am planning to go to a support group. Sorry ..... I don't want to make things worse my sharing my own situation .... I just want to say that I'm thinking of you xx ... View more

Thank you so much for your reply. This is my first time of using the forum ... and even just hearing another voice really helps me. I will try hard to believe in the treatment working - and in the other options available if it doesn't .... and hope that the scans will get done soon and give me more information. Thanks again and wishing you well. ... View more

Hello everyone. This is my first time of posting. I was diagnosed with Stage 4, secondary in the bones and various lymph glands, in September, having found a lump in my neck. I am on Palbociblib, Letrozole and Denosumab. I have just completed my first three weeks of Palbociclib and everything seems to be getting worse... I have gone from being asymptomatic to having some pain in my breast and chestplate area, a cough and breathlessness. My oncologist has ordered another round of scans - to see if the changes are due to the treatment or to the disease progressing. I am very frightened. I wondered if anyone else has had any similar experiences? ... View more