Kisqali

Glynnis

@Marieda glad to hear that I wish you well with your treatment, I’ve been on anastozole for 3.5 years so some of the side effects I’m already getting so I’m hoping to go well on it. 😃

Marieda

@Glynnis here's hoping we go well with our kisqali

youngdogmum

What is Kisqali like? My oncologists have mentioned it as an option for me in a clinical trial after chemo... it’s recruiting at the moment in the US but supposedly comes here late 2019 for non metastatic ladies to see if it serves any benefit. It would be double blinded so I may get placebo of course. Thanks 🙂 

Patti J

@Glynnis, @Marieda, @youngdogmum. I have just been to see my oncologist. I am on Palbociclib and Letrozole. She is a fan of Palbociclib not Ribociclib because, apart from low white cells, there are far fewer side effects.
Also, Palbociclib will be available on the PBS from 1/5.
I will then be referred to as a "grandfather patient". 😁

elisewjk

If its of any assistance, my Oncologist advised/insisted that I purchase the Kisqali from the hospital pharmacy where I am treated. He advised they have been trained and counselled in how to dispense this drug and are up on the side effects, interactions etc whereas most Chemists aren't. So that's what I do. They also have a very effective ordering system going between the Oncologist and the hospital Pharmacy, so they always have them available when I need them

Glynnis

Thankyou @elisewjk first dose coming from the hospital, which I’m still waiting for, I know it has to be ordered got told would have it today but I’m still waiting for it, then after that have got the chemist on board so that’s where the rest is going to come from

Marieda

@PattiJ that is very interesting.   I will ask my oncologist about Palbociclib, though I haven't had any side effects as yet after my first month on the kisqali, the possible side effect on the heart are a concern.

Angelo

 I’m in Perth and have been on Kisqali for about 4 months. My chemist orders in every three weeks and it normally takes about 3 days. Recent tests have indicated that it is working , fingers crossed it keeps working . 

Glynnis

That’s awesome @Angelo always great to get that news 

LucyDee

Ive been on Ksquali since last August along with Letrozole since last June. After breast lump was cut out in March & 40 ‘positive’ Lymph Nodes in April. Leading to a Stage 4 Estrogen positive BC diagnosis. 

No serious side effects so far, except Ksquali makes me tired and Letrozole makes me feel hormonal ie run hot and cold, despite being post Menopausal. But the good news is the 4 bone Mets, 2 on my spine and 2 on my skull haven’t grown or spread.

I give my Chemist my scripts the Monday of my week off (from Ksqali).But initially it was going to take two weeks - just as well I wasn’t in a hurry and that now we are in a routine.

Glynnis

@LucyDee so glad everything going well for you, your results are so positive which is awesome 😃

LucyDee

My specialist is so happy with my progress @Glynnis, that I only have bloods checked every two months from now on, instead of every month.

Glynnis

@LucyDee that’s awesome keep up the good work 👏

LucyDee

Thank you, you too @Glynnis xx

Glescagirl

Hi Glynnis, I have been on it since October last year. I'm on the Sunshine Coast.My local Chemist Warehouse order it in. They hold my prescription, and I give them three days notice each time I need it. Sometime,s if my Neutrophils have have fallen, (which is quite a common thing to happen),I have two weeks off it, so it isn't always a regular start time each cycle. I agree that one doesn't need the stress of chasing around at this stage in your treatment. It was very new when I started, but you'd think it would be quite common now. Of course not all breast cancer patients are on the same treatment. Good luck with having a reliable system of supply worked out for you very soon.