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week 3 Kisqali

jltorcz profile image
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Anyone feel really crappy into week 3 of Kisqali?

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jltorcz
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Discocat profile image
Discocat

Hi

Sorry your feeling crappy.

Can you be more specific with your symptoms?

I felt very off after about 2 1/2 months taking Kisqali. I had a rash on my arms and legs like a heat rash. I felt very tired and brain was foggy...sort of an odd light headed feeling.

Blood tests showed I had elevated liver enzymes. I had to stop taking all meds to bring these back down. After a month or so I was switched to Ibrance which is working great and there were no issues with being off meds as all scans showed continuing stability.

Hope this helps...Best to notify your oncologist of any symptoms. I remember while I was on Kisqali my heart was monitored at every check up as there can be complications taking Kisqali....

Important to keep your doctor informed...especially on a new med.

Best of luck to you.

Zoe

xx

jltorcz profile image
jltorcz in reply toDiscocat

thanks for the response. Firstly, my ankles swell if I am up and about, but yesterday morning I just felt sluggish and dizzy but it did pass. I have just started all these treatments and did start on Ibrance, the protocol StAnford used in most cases. The two months on that, I felt fine, but had to delay because my neutrophils really got very low. My oncologist decided to try Kisqali because of recent findings. I also have to have the EKG’s and I am on the border of lowering the dose. It seems my body reacts differently to each medication. My doctor told me to keep my feet elevated when I can and monitor the swelling. So that is what I will do today.

Discocat profile image
Discocat in reply tojltorcz

Kisqali is a very effective treatment...in the few months I took it as my first treatment at diagnosis de novo it dramatically reduced my primary tumour....I never got to the stage of trying a reduced dose as my oncologist thought my reaction was severe enough to rule that out....but there are various ways that you can take it at lower dosage and in slightly different cycles.I think some people take it 5 days on and two off in repetition....

Hope you adjust to it as quickly as possible. Its good that your in communication with your oncologist!

jltorcz profile image
jltorcz in reply toDiscocat

Thanks. I think the oncologist is monitoring it all. What were your severe reactions, if I might ask?

Discocat profile image
Discocat in reply tojltorcz

The high liver enzymes were to the point that the oncologist believed I was having an averse reaction to Kisqali and that my body couldn't process it. So on that basis she decided not to try lowered dosages and I went onto Ibrance instead.

jltorcz profile image
jltorcz

Okay, so it was the bloodwork that made the decision.

Discocat profile image
Discocat in reply tojltorcz

Yes. In the beginning I was having blood tests every week to monitor everything, and I saw the oncologist every month.

Now that I'm stable on ibrance I only get blood tests before I see the oncologist every 3 months.

It's been almost 3 yrs since the start of my diagnosis.

I also take Letrozole daily, Zoladex monthly as an implant in the stomach area near to ovaries....and I have Zometa infusions once every 3 months now (reduced from once a month after doing the treatment for 2yrs). I also take a calcium / b vitamin supplement daily that the oncologist prescribed.

jltorcz profile image
jltorcz in reply toDiscocat

Wow! I am so sorry. That is a lot. Since I just was diagnosed in Oct. I don't know what lies ahead. Maybe the doctor will put me back on Ibrance. I guess it will be all discussed after my first PetScan after diagnosis on Friday.

Discocat profile image
Discocat in reply tojltorcz

All my meds are pretty standard.It's because I'm not menopausal yet.

The Zoladex is to inhibit ovary function and the Letrozole blocks Estrogen. I was diagnosed at 50yrs old.

Wishing you all the best for your scan.

jltorcz profile image
jltorcz

you too.

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