Thank you for sharing your experience with me Beebs. It’s truly appreciated.
i guess being frighted of the unknown is natural. I am meditating an awful lot these days and it helps me. Meditation is not for everyone but I found it has kept me calm and focused in the moment and not trying to sort out things I have no control over. I have put my trust in the medical team and hope they do the best for me. Xx
I was exactly where you are now in January😞 I'm guessing they may be delaying the start of palbo because when you first start it, you will need close monitoring, lots of appointments for bloods, scans etc..a guess, I'm no expert.
My combo is palbo, letrozole and zoladex - I was very frightened of how these drugs would change me and the fact I would have to have meds forever made me feel worse. The first cycle was not good - constantly tired and feeling unwell. My dose was then reduced and things got better, after my first MRI (3months into treatment) it showed a little improvement (which I could feel). I'm hoping my next 3 months scan will show further shrinkage 🤞. Now I'm in cycle 5 - it's all part of my new normal, I've accepted - it is what it is. I take my meds with my evening meal (so I don't forget), I drink plenty of water to 'flush' things out (advice from BC nurse).
It's all scary - no point saying it's not! Yes, no end to treatment - but I figured if I'm stage IV I'd rather have ongoing treatment so I know what's going on, rather than not knowing.... that's bound not to end well!
This forum is truly great place, so many wonderful ladies sharing their experiences has helped me to focus and be a little more positive about the journey ahead. Sending you hugs x
Dear Jennie60 and Gillyflower,
thank you so much for your response, which is very much appreciated....
I am still in shock, scared and feel this is all happening to someone else. I guess I need to give my self time as you have already said. I am afraid I might remain in this state until the end, when ever that may be... so thank you both for letting me know that things do feel better once treatment is in place. My oncologist said that she wanted to delay starting Palbociclib due to Coronavirus. I have had my first Fulvestrant and next two are due 27th May and 10th June. I live alone and do not go out other than for a short walk, food is delivered. Does anyone know, Is there any reason I couldn’t start the Palbociclib now, other than if my white blood cells are low..
I told my daughter in Australia this morning and like you Jennie60 I have told her that I will tell her everything when I know...
thank you ladies for your responses, very much appreciated. Xx
Reaching out and sending lots of love and hugs to you, I'm so sorry about your diagnosis. Its a horrible shock and there are so many powerful thoughts and emotions that come with it. As if its not enough that you've already been through so much once already! xxx
Its a lot to process and will take time before things start to settle down a bit, especially in these early stages. I was just diagnosed with my secondaries in January this year, so only a few months ahead of you but I can tell you that once you have a treatment plan, a new routine and have found some sort of stability (however temporary), things do feel a bit better. I was almost ready to go back to work and resume my new normal life and felt quite stable! Thankfully there are so many ladies who live with this long term who share their experiences (both good and difficult). The amount of positive stories out there is amazing and I find they bring much hope and comfort, especially when you learn that people can still live for years with this.
I started on Palbociclib and Letrozole in January and found I tolerated it very well, bar a few days of feeling a bit under the weather, a little tired and the odd sore throat. My Oncologist tells me its an excellent drug and gives a good quality of life whilst managing the disease and I certainly found it to be the case even after just one cycle! I do hope that you take well to it and the Fulvestrant xxx
Hi I just want to send my love. You asked how to cope. For me it's a daily thing. I wake up and think how do I feel? Get up and try to avoid any negative thoughts. But that doesn't always work. I was diagnosed in October last year and shock, scans and appointments put my life on hold. I can't remember November. Telling my family (two grown up daughters) was the worst thing. I promised them they would know everything I knew. This made them feel secure, and they began to accept things. Im sure other ladies on here will say you get into a new normal. I've worked and had fun since diagnosis. I know that seems impossible now but I'm sure you will in time do the same. It's early days. So be kind to yourself and ask as many questions as you need. I'm on similar meds to you and it's gone well so far. Take care. Lots of love xx
Good morning, I have been diagnosed with secondaries this week. I am not surprised but it’s still a shock. I was diagnosed with primary back in November 2016 and had a lumpectomy, chemo and radio. I had CT scan for another issue recently and they noticed nodules on my lung, another CT scan followed after 3 months which confirmed changes to the nodes which are apparently very small so they cannot be biopsied. I was told I would start on Course of Fulvestrant and Palbociclib. Infact I was given the 1st of 3 Fulvestrant Injections straight away but the Palbociclib will follow as they are concerned about Covid19 at the moment. I worry how these new drugs will affect me. Will they work? Will they shrink the little blighters? I haven't been on the site since Feb/March 2017 shortly after I was diagnosed with primary in November 2016. I met so many lovely ladies who were in a similar situation to me, we went through chemo and radiotherapy together and have remained friends with many of them. I am still coming to terms with this new diagnosis and back to all the waiting again.... the treatment will be on going and scans etc with no end. How do you ladies cope with this new way of life?. I am encouraged by reading that many are living longer with cancer these days but I am find it hard at the moment to get my head around it. Lots of love Xx