Kisqali - an opportunity to influence the drug company

DebbiePDebbieP Member Posts: 24
edited August 17 in Metastatic breast cancer
I have the opportunity to talk to the manufacturers of the newly listed drug, Kisqali. 

I would love it if it if you could think about anything you’d like the company to provide you when you take Kisqali. For example - I’d like smaller tablets and I think a phone helpline to answer questions about the drug would be good. What do think?

How did you find the written information and the information you received from your oncologist when you began taking the drug? Was it helpful, scary, too technical?

Please feel free to post any comments, or suggestions. 

Many thanks for your your time.

DebbieP



Comments

  • lrb_03lrb_03 Member Posts: 1,164
    @Glynnis would you have any comments?
  • GlynnisGlynnis Member Posts: 279
    Morning @Irb_03, i think my main thing  would be the dry skin, im atually doing ok on the kisqali, but the dry skin is driving me nuts but again not sure if it's the kisqali or letrozole. Like @DebbieP smaller tablets would be good
  • DebbiePDebbieP Member Posts: 24
    Thanks @Glynnis.  It is often hard to know which drugs are causing which symptoms. Thanks for sharing. 😊
  • wendy55wendy55 Copper Triangle South AustraliaMember Posts: 478
    Hi @DebbieP
    What a wonderful opportunity you have, myself, what I would like brought up, is, what are the possibilitiies of this drug being available to women who are into their third line of treatment or more, there are a lot of us who did not meet the criteria when the drug was initially put on the market ie we had already had at least one round of chemo and maybe more than one hormone treatment, now that it is on the pbs it is so much more accessable, but it seems only to a certain amount of women/men or meet the strict conditions, personally I would love to have had the opportunity to try this drug but I was denied at every attempt.
    Would love it if you could bring this up.
    wendy55
  • DebbiePDebbieP Member Posts: 24
    Hi @wendy55,  That is a great question and is already on my list. I will also ask them if there are any plans for compassionate supply for second and third line treatment. That is how I got the drug before it was available on the PBS. I know, just so very lucky. I wish it was available to everyone. I’m also going to ask why it is such an expensive drug. My guess is related to research and testing and time involved but I’d like to hear it from them. 
    Thanks so much for replying to my question and all the best with your health. Debbie
  • AngeloAngelo PerthMember Posts: 25
    Hi @DebbieP, I have been on this drug for 8 months. I take 600mg every evening as I find the side effects easier to manage. Should this drug be taken at a specific time and if so why? Thanks for this opportunity. 
  • DebbiePDebbieP Member Posts: 24
    Hi Angelo,  I will ask the question for you but will not probably have an answer until early October. I’m not due to meet them until September. Would it be helpful for you to have a helpline to call for these sorts of questions?
    Debbie
  • Summerhill38Summerhill38 Member Posts: 812
    Hello @Angelo - Most drug companies have their medicine line listed on the box or bottle (usually in a tiny font).  Perhaps give them a call and chat about their recommendations ?  I have done so with other drugs and found them very helpful.  Good luck.
  • DeebsDeebs Member Posts: 7
    Is Ribociclib a form of chemotherapy?
  • KattykitKattykit Member Posts: 215
    No it's not a conventional chemotherapy, it's a targeted drug , a CDK4/6 inhibitor, that interferes with processes in the cells that cause cancer to grow, it must be taken with hormone therapy like letrozole.
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