Fulvestrant injections and Abemaciclib - Hello

Hello Sapphire51 

I am Brian one of the Community Champions here at Macmillan. I have noticed your question has gone unanswered, I can't answer it as I have a very different cancer, however by me replying it will be "bumped up" to the top of the page and I hope seen and answered by other members of the Secondary breast cancer group.

I have noticed you did post this in the Brest Cancer group and that post was also unanswered so it may well be that no Community  Member has gone down this path.  Can I suggest you ask the question to one of our cancer nurses and here's the link:

 Ask a Nurse 

Please give them a couple of days to answer as they are busy,

I do hope this helps and you get some answers.

If I can do anything else for you please do let me know.

Best wishes - Brian.

Thanks. I am not surprised as my consultant told me right at the beginning that the way my cancer had developed was extremely rare as is the treatment plans using whatever drugs might help. Living with cancer is certainly tough.

Hello Sapphire51 

Ah, I don't normally deal with breast cancer - just helping out!! I am so sorry yours is a rare cancer. Have you thought about asking your Consultant if there are any trials you could be enrolled on?

I agree living with cancer is tough and I think the only people who properly understand us is fellow cancer sufferers - we have a type of bond.

I wish you well and hope you can get sorted.

Best wishes - Brian.

Hi Saffhire51 I was on the injections and ribicyclib for a year then they stopped working the only side affects I had was I was really tired I'm now on two lots of tablets fingers crossed they work I wish you well with your treatment  x

Thanks for replying. That is promising that your side effects were minimal but I am sorry that it stopped working for you. I guess the magic wears off whatever drugs we have. The Letrozole was working very well against the cancer in my bone marrow but it would seem it was not enough to stop the cancer moving in on my bones and lymph nodes hence the move to Fulvestrant and Abemaciclib. Having thought about it, I haven't got any other option

What tablets are you on now? Hoping you get a better outcome.

Hi , Sorry you are also going through this . I’ve been on Letrozole and Abemaciclib for 18 months. Abemaciclib has been tough at times but we’re all different and it’s doable . I’ve still managed to go on holidays . But I probably should have reduced my dose a long time ago as I was on 150mg for 15 months but the dioreah just got unmanageable so I reduced to 100 mg in November and it’s tons better! I have liver mets and had shrinkage for about 9 months and have been stable since although I’ve a feeling it’s going to change on my next scan as the last one , the tumours have changed in structure although they still think I’m stable they can’t measure them properly . They're doing an MRI next time for a closer look. Hopefully not but I’ve done well on this drug. I’ve been told there’s other treatments after this though so we have to stay positive! Also, who knows what new drugs will be out in the future. What dosage are you on and how is it so far? Xx

I do get fatigue but tbh I think we all do whatever drug we’re on. ️

Thanks for sharing your experience. It is encouraging to know that it is doable. None of these treatments are a walk in the park. It just came as a shock after the CT scans that the magic had worn off sooner than I had hoped and having to contemplate the change to Fulvestrant and Abemaciclib. I have an echo cardiogram next week and meet with my oncologist for result and update from the Complex Case MDT on the recommendation of the change. I have no idea what the dose will be. My concerns are mainly about the increased risk of infection and hospitalisation, as I had two pretty grim experiences of admissions last summer not only of the 14 hour waits in A&E each time but the traumatic time on general medical wards.

No problem, if you have any questions let me know. I’ve done really well with bloods and not had any low blood counts or hospital admissions. I know this drug like all the others can do this but I’ve read it’s a bit gentler in that department (don’t quote me though! ). The main problem for me has been dioreah but is much more manageable now. Take care and good luck xx

Sorry you had to endure hospitalisation. I was hospitalised every 8 week's after my primary cancer treatment and got sepsis !  I had a reaction to radiotherapy about 3 months after finishing treatment . It went in for about 2 years on and off after so I know how you must have felt . Then along came secondary 18 months after that  but we keep going! Xx