Kisqali & Letrozole - thankful & fearful...

Hi @jancoates I have been on Palbociclib cdk4/6 inhibitor. Along with anastrozole. For over 3 years
I do 3 weeks on 1 week off have a blood test see oncologist for results etc. 
Its easier than the chemo was. In all that time I’ve had 3 rests 1st one when I caught covid. 2nd a pretty rough chest infection. And this last time was due to my neutrophils staying too low for too long. Back on it now 2nd mth in. This last break was the longest I have had. 

Hi @jancoates, I have been on Kisqali for over a year now. 16 cycles. It's 3 weeks of tablets and a week off. I have experienced nausea but if I take kisqali after meal then no nausea. I did experienced hair thinning for the first 8 months but it is grown back thicker than ever.  Other than that I get a little fatigue but that's common with mets anyway. I also have Fulvestrant injections every 4 wks. I am so thankful for kisqali because it's is keeping me alive and giving me more time with my family. 

Hi @jancoates
Different people react in different ways to the drugs. 
Most important  thing is to let  your medical  team know of any side effects as soon as they occur.
Do you have a McGrath Breast Care nurse?
They are usually a great source of information.
My understanding of Kisquali is the number one side effect is low neutrophils but you will have regular blood tests to monitor this.

Hi All, I'm at what might be the  beginning of Kisqali treatment. Currently on letrozole and the oncologist wanting to add in this. After reading the very common side effects I am really hesitant. They are the same as chemo .
I am really interested in others reactions to this drug
 At the moment I am so well that if I didn't have a diagnosis I wouldn't know there is any thing wrong.
The length of time I live is not important but being able to live well is.  

Hi Cath, thank you so much. I hadn't heard of All Clear and will check it out. Sorry to hear the news of your friend and the enormous expense in getting home. There is so much to see in Australia we are very fortunate. I have family back in the UK and thinking of travelling on a Baltic Cruise of just a couple of weeks which hugs the coast and visits some countries with reciprocated medical agreements and then visting family in UK. I love NZ enjoy your trip in October.

Hi @MargaretTurner, apparently a company called All Clear provides insurance if your metastatic but I haven't checked it out. I believe it is insanely expensive and I don't know if it covers medical evacuation. You would need to check. 

Medical evacuation is incredibly expensive. A friend who couldn't get travel insurance for a pre existing heart condition went to Greece to see his mother. Unfortunately he had a stroke and required medical evacuation back to Australia. That cost over $400,000. 00. His family set up a go fund me account, drew on their superannuation, sold what they could and also went into debt to get him home.

I love travelling so much. It has been an enormous part of my life but being metastatic now I am just travelling in Australia and will consider medical reciprocated countries. I am limited to my 28 day treatment cycle now but I do get around. Off to NZ for 2 weeks in October. 

Happy travels 

Hi everyone - seeking advice on any particular travel insurance organisations that offer insurance cover for those of us living well with metastatic cancer. Planning an overseas trip for 2025. Will stay close or in countries with reciprocal medical arrangements. Is there any company that will provide cover for emergency evacuation insurance or cover in case of cancellation holiday insurance due to ill health prior to leaving? I already have general travel insurance cover for all else other than medical through credit card travel insurance. Oncologists encourage travel when well but insurance companies do not appear to accept their written OK to travel. Appreciate any advice - thank you

Hello there,
I too am on both Letrozole and Kisqali. Well, I was until very recently. Have had 5 months of Kisqali, but my most recent full blood tests showed crazy Liver function tests. Had to have a liver ultrasound to ensure nothing scary or sinister, and will be off these until the levels come down to normal. There were a whole bunch of weird symptoms that I kind of ignored, but now make sense. I was taking my Kisqali before bed, and usually during the 2nd week I would get really bad headaches. 
Will have to wait and see what happens next - have med onc again this week to see if my levels have started to return to normal and we'll go from there.
These side effects were on the EviQ information sheet for this medication, but because they were listed as weeks to months, I kind of ignored them.
Hope you're both feeling OK (as can be) on these meds. 
take care
Kelly