Kisqali, blood tests and scans

Thanks for your comments @nunthewizer. Hope your partner is doing well.

Kind wishes to all, doing research as a carer for my dear partner.
Not happy after progression on Arimadex, Ibrance after nearly 21 months in September.
Liver biopsy still ER+ HER2- but genomics tests revealed ESR1, ATM variants.
One week on Tomoxifen then Fulvestrant after genomics test came in.
Does every one know about genomics testing and in some cases can be done before progression to be proactive?
Not a panacea but targeted, precision oncology the future.

.Tumour markers not reliable in isolation, trend maybe, other bloods liver function etc, how you look and feel.
If you feel something is wrong get a second opinion.
Arimadex, Ibrance was standard of care, first line 2 years ago.
We’re you prescribed Fulvestrant, Kisqali first?
The recent San Antonio Symposium reported Ibrance no more effective than other CDK’s and when progression is finished but switch to  Kisqali yes.
PBS only allows one CDK4/6 so may as well be best efficacy/ side effects profile.
Not for everybody but medical CBD.
Resist other meds as far as possible.
Integrative, complementary.

Good news new drugs in development 
Orall SERD’s Orserdu $$ , Camizestrant etc and antibody drug conjugates, Dato-DXd etc
see San Antonio Breast Cancer Symposium, The evolving landscape of treatment after CDK4/6 inhibitors 

Hi @Locksley and @Blossom1961,

I don't know if dye will be used as I haven't had the first ct since treatment started at the end of October but my guess is that if will have dye based on others experience.

Not sure how often a pet scan will happen but perhaps this will happen if they suspect a progression or the oncologist might do a pet every 6 months.  I just don't know yet.  I am trying not to get ahead of myself worrying about what next because this whole mets thing is stressful. I am best just going day by day.

I am just on the 3rd round of Fulvestrant and Kisqali and really hopeful it works. They do have good success but I guess I have to wait and see. Sorry it didn't work for you @Julez1958. At my next round in January  I will ask the oncologist for a contrast ct to see if it's working. I will also see if the ca15 markers in the blood are showing anything. I can feel some pain in my spine where the mets were found and that concerns me a little because I had radium there and had no pain for months. Then again it could be from picking my grandson up.

Hi @Cath62
I was on kisquali / Fulvestrant initially for 3 months but it didn’t work so I  moved to xeloda and my first 2 petscans were good.
i have a petscan every 3 months but my oncologist said if my next scan is good we may make it 6 months.
it is interesting how oncologists use the blood test results as a marker and others don’t .
i hope the kisquali/ Fulvestrant combo works for you - a lot of ladies  on here and on other forums have been on it for quite time time .

@Cath62 I am on a different treatment but have both a CT and Pet scan every three months. This is expected to be ongoing. I do have the contrast dye for the CT. 

@Cath62  Hi Cath do you have contrast dye with your ct scans.

Oh thank you that helps a lot. Yes u think I do need to be more active. I haven’t done any exercise lately. I will get back into it. I’m on the bone strengthening injections too. I have been having breakfast then take it. 

Hi @Overwhelmed, sorry you are in this situation. I was diagnosed in July but suspected mets after a spinal fracture in January this yr. It just didn't show up until the July. 

The first 6 months have been really hard emotionally but I am getting there. I did some counselling and will continue with it.

Nausea is a known side effect of Kisqali. I had a little bit when I took 600mg per day but it isn't as bad now on 400mgs. Talk to your oncologist about it.

The pharmacist told me to take Kisqali on a full stomach to stop nausea. I do this after breakfast. I have heard some people take it at night and sleep through the nausea. I think regardless of morning or night the important thing is to take it at the same time every day. 

I have Fulvestrant injections too and bone strengthening injections as well. I get bad fatigue but try to keep exercising to help this. For me I walk 6 days a week and do yoga, meditation and practice mindfulness. I also joined a local support group for advanced cancer patients. I find that inspiring and helpful. Many of the breast cancer mets people in the group have been attending for many many years.

Best wishes to you ❤️ 

Hi I am new to the group. Feeling a bit lost and unsure about things. I was told I had Mets in October. On my second round of Kisquali 200mg and take 3 a day. I feel sick with them. Is this what is the norm. Nausea and tired. 

Thanks @sophiek55. Funny my oncologist thought 600 would be too high for me but tried it anyway.  I am only on the second round of Kisqali tablets so hopefully my body handles it and I get a good response with it. 

Wow @cranky_granny glad you oncologist was on to it. Sounds like mine. I fractured at T9 and the GP tried to tell me it was osteoporosis. That was in January this year. I had a feeling! I contacted my oncologist who did an mri. She repeatedly did mri's every 3 months and the bone mets finally showed up at T9 in my spine in July. The oncologist just kept hunting it down. She had continued to say to me ' it's not normal to fracture in your spine' and she kept ordering those scans until July when she ordered a pet scan and it confirmed this for me. I had lost a bit of weight in that 6 months too and I would look at myself in the mirror wondering if it was cancer. Well my gut feeling and the oncologist was right, it just took awhile to present itself. So onwards and upwards and scan to scan.