Kisqali, blood tests and scans

Cath62

I just started on Fulvestrant and Kisqali. First round of Kisqali at 600mg. Bloods show liver enzymes up so oncologist dropped to 400mgs for second round.

Oncologist said my blood tests are ineffective at showing tumour markers and this happens sometimes and it's just unlucky for me and one of those unusable things. So the only way to know if treatment is working is via scans.

Oncologist said she would look at CT every 3 months rather than pet scans. Has this happened to anyone else?

brightspace

Hi Cath 
At the start The norm is for Ct scan every three month 
For me When stable  and drug reduced mets size scans can be be left for 4 months I was on this combo for 2 Year
All the best 
Bright

Cath62

Thanks @brightspace. I wrongly assumed it would be monitored via bloods but yes starting to understand that it's CT scan that will be every 3 months. I guess atm it's a matter of getting my dose right. Fingers crossed it works for me. Hope you are going well. Thanks again for your response.

arpie

That's interesting that your bloods don't 'show' cancer markers @Cath62... I wonder if they've ever looked into others like you?  Sounds like they should, as it is the easiest & most cost effective test to have ... xx

All the best for getting that dose 'right' & the least side effects xx. Take care xx

Cath62

@arpie I have learnt from others that bloods are just not reliable for many with breast cancer mets and so it seems it is common place to do ct scans every 3 months. I feel better living with that uncertainty knowing I am not alone with this. 

sophiek55

Hi - I’m also on this combination…. Also waiting for 3 month scan. I think the issue is that the cancer markers in blood tests are not reliable … but I’m not medically trained!

I am finding that I feel really fatigued - but I’m only 3 weeks in, so that could be because a) drugs, b) cancer c) psychology or combination!

best wishes for good outcomes for you!

sophie

sophiek55

By the way, I started on 400 mg - so I think it is accepted that 600 is often too high…

cranky_granny

@Cath62 i have CT scans every 4 months funny the ct didn’t show up my bone mets the bone scan spotted it first. I was on bone scan annually but for now they are they’ve chucked it back in the 4 monthly routine. Also originally the blood tests didn’t show any marked rise in my cancer markers  till 3 months after the first sign of possible metastatic disease it was when the osteoblastic activity increased and the size of the area increased so did the cancer markers go up that confirmed the metastatic bone lesions. Because of where they are it wasn’t recommended doing a biopsy besides being extremely painful to have done.    I remember having both a ct and bone scan at 6th month after end of original treatment it was mainly done to get a new base line  and it was just as well it was done. My 1st radiation oncologist blamed arthritis for the changes. Just as well my medical oncologist ignored him and went with her own judgment or it could have been much worse before i went into 1st line of treatment for mets 

Cath62

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. 

Overwhelmed

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. 

I have fulvasent injections monthly. I so want to feel normal again but I guess this is the new normal. 

I had radiotherapy on my back early on in the diagnosis as it’s on my back. This seems to have helped.  It’s also in my lymph nodes, ovaries and stomach. 

I am trying to stay positive and think reading all your stories will help. 

Thankyou 

Cath62

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 ❤️ 

Overwhelmed

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. 

I need to mediate too. I have done some and it helps me fire sure. 

I will look into the support group. 

Thank you so much and all the very best to you too. xx

Locksley

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

Blossom1961

@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. 

Julez1958

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

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.