Hi, can anyone help I was told yesterday that my recent pet ct scan and biopsy show a return of my ER/HER positive breast cancer in my lungs and there are some indicators that it may be in my hip bone and lower spine. I’m due to start fulvestrant injections with denosumab injections and abemaciclib and would like to hear from anyone would has experience of this treatment and what tips you can share please. This is the lowest I have heen since having dcis in 2010 followed by ER/HER breast cancer treatment in 2018 and 6 years of letrozole.
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Hi ameyne!li61,
Im on the same regime, 8months in, first month as im sure you have been told is full on bloods x 2, start abemaciclib 150mg twice a day, then injections.
The fulvestrant isnt a walk in the park, i joke but each injection into top half of buttocks takes a minute or so each, the nurses are brill, they try and distract you from the fact your standing bent over showing them your butt cheeks whilst they inject them. It can be tender to sit for a couple of days after, soon wears off, im still not used to it. Recommend the denosumab into stomach area.
The targeted therapy drug does have side effects mostly diarrhea, this normally starts around anywhere between 6-10 days in from starting. Can be controlled with imodium, diet, fibre etc it effects ppl differently, you will find a happy tolerated medium. (Heads up watch out for stomach cramps) normally find this a good indication of need for bathoom visit.
My secondary breast cancer of the bones treatment is working well so far on this treatment as in as of today 2nd CT Scan in my cancer markers have dropped from 345 in dec 23 to 96 today, i will take that result any day even though the last nine months havent been a walk in the park, emtionally, physically or mentally, have had some huge wobbles but am getting there with support from here, Maggies and Macmillian conscelling.
I wish you well, with gentle hugs
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Thank you so much purplerose for sharing your experience of this treatment with me Sending you a virtual hug and best of wishes as you continue your journey as I begin mine
I’m so sorry to hear you’re feeling low @ameynelli61. It’s understandable when you’re facing so much uncertainty.
I hope you find the forum a supportive place and please know if you ever want to chat things through, our breast care nurses are here. You can reach them on 0808 800 6000.
Thinking of you,
Lucy
Hi I am on the same treatment. Started fulvestrant in may this year and abemaciclib in July. Got my injections this week and said to the nurse that I have a lump on either side where the needles go in. She seemed surprised at this. I’m wondering if I should be massaging afterwards to disperse and prevent this? She didn’t seem to know. Have you noticed this happening to you?
Hi
I am on the same regime. They start you on 150mg but this seems to be hard for most women to tolerate due to the diahorrea side effect. I am managing to cope with the 150mg as the diahorrea is random…can go days without any bother. I carry immodium every where though. The hardest side effect for me is hair thinning. I’m wearing wigs now at times when I want to feel nice. I have curly hair so I can with help if products make it look a wee bit thicker but every time I wash it the hair is sticking to my fingers. I am wondering now if a lower dose would help with this. Apparently it doesn’t matter what dose u are on between 150 to 50mg, it won’t affect the efficacy. Everyone is different as regards the hair thinning. I first had BC in 2017 and lost all my hair very quickly even with the cold cap so it looks like it’s my weakness. Apart from these side effects I am coping well with it. Hope u will too. Xx
Hi
Just a wee tip for you…nurses might suggest it. Bend your foot and lean on your toes before the needle goes in… apparently this relaxes the muscle. I just pull my pants and trousers down a bit and don’t need to bend over. Hope u get on ok. Xx
Hi Sandra I had my first injections of 150 on Wed which hurt more then I thought I’ll try your nurse’s tip next time will keep you posted if I notice any hard lumps. My doc did promise no hair loss but he said my hair and eyebrows would come back after chemo in 2018 which did’nt happen so we will see. Please let me know how your journey progresses. Good luck and take care of yourself
Hi all lovely ladies
Re fulvestrant injections, i was told a good few months ago by a lovely nurse doing my injectiions, kneel with the side you want injected first on the chair,(just one knee) slightly bent over, this helps to relax the butt musscle being done. Then swap… After 10months of injections, a small under skin lump can form, i do tend to massage the area within a hour of injection, dont recommend day after, lol too painful/tender to do so. Normally lasts for approx 3days, then tenderness depletes.
So hope this tip helps …sending hugs x
I have recently started on Fulvestrant but with Ribociclib. Have had 3 lots of injections so far and am currently on my second lot of tablets.
Hi susans23 you are a couple of injections ahead of me I had my first one last Wednesday and will have my second next week so early days for me I hope you are well and wishing you all the best with your treatment
Hi ameynelli61,
I’m doing ok. Haven’t really experienced any specific side effects other than night sweats which wake me up and fatigue. I do feel a bit ‘meh’ for about 4 days after the injections but it isn’t anything specific. I found that I felt more ‘like myself’ the week that I wasn’t taking the tablets. I’m keeping a diary of how I am each day so i can see if there is a pattern or if anything becomes a regular issue. I’m sore/tender after the injections for a few days. The nurses said to wiggle my toes as I’m being injected as it helps - I did as they said. One side always seems to hurt more than the other and the side that hurts most bleeds a bit more. I’m having Denosumab injections as well so feel a bit like pin cushion on treatment day.
Best wishes.