Anyone here who has used Sevabertnib for treatment?

Posted by donnademps @donnademps, 7 hours ago

It's been some time since I've posted here. After having a rt lower lobectomy in Feb of this year. I was cancer free! After having my first 3 mos scan (altho my first scan was actually 5 mos after my surgery), 4 pulmanary cancerous nodules, metastasis in both lungs and likely in my liver and spleen. Long story short, I wasn't happy about the treatment I was being offered. It was the standard treatment. I have a very rare and aggressive mutation called HER2, which more often shows up more often in breast cancer. The standard treatment in Canada is CRBPPEME +PEMB. It gives me 3-24 mos. My husband and son found a treatment called Sevabertinib that is not approved in Ontario. Eventually, we found a randomized trial at Princess Margaret and I have been accepted! That is the best news for me. It's a cross-over study, so I could be given the standard type or the Sevabertinib (Sevey). If the standard is not working, I automatically start with the Sevy. I can't start until early Sept due to the MANY tests required before the start. I have other things to be grateful for. After my lung surgery, it was discovered I have HoCM, but that is not an issue for the study. (whew!) The other great thing is that I now have an amazing support team working for me. Princess Margaret is one of best (if not the best) hospital for cancer, better than the one I previously had, Jurvinsky. I am devastated to hear of metastasis so quickly after my lobectomy. My Thoracic surgeon was also devastated to see those results. The biggest hill for me right now, is having a good result in my brain MRI. My cancer is known to spread to brains. If it has spread, I must have radiation first before entering the study. I have that test on the 23rd of this month. It's that hardest part of having cancer for me..(waiting and waiting).
It's been really hard for me to get these results. Shocking really. I do know I have the best possible team working for me and that brings some comfort. There will be lots of ups and downs coming up for me. I will keep you posted as I move forward.

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Hi @donnademps ,
I’m so very sorry for all you have been going through. I can only imagine how overwhelming you and your family must be feeling.
I’m as well glad you were accepted at Princess Margaret !
Having to have so many tests and doing the waiting game over and over is difficult to say the least, I pray it moves along quickly though for you.
Prayers offered up for a positive result of your Brain MRI on the 23rd.
Yes, please keep us posted.
Positive thoughts sent your way as you navigate through this.
🤗 Daisy

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