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hi all and @elena_p in particular …

I’m always a bit stressed to write good updates … yes it’s encouraging but it’s also a bit : why her and not me.

So after taking myself off Kisqali for 5 weeks again this autumn for a holiday and then back on it , just had the Petscan : my Pet-CT was even better than the last one. The micro blips (too small to biopsy) keep coming and going , this time they’re all gone again 🙄🙄 it’s excellent news but honestly : that scanxiety suddenly peaked. Is my body getting rid of it ? Is it the K ? Only god knows.
My hereditary / mutations bloodwork they finally did was all negative.
So I’m now definitely beyond 6,5 years on Kisqali (400)/ letrozole as first line.
I try bringing up to the oncologist to take me off Kisqali completely but she pretends she never hears me. I’ll try her again in 3 months. CT MRI Bonescan Ecg …. Seriously??? I’m not booking it all , have they lost their minds ?

In other news : I finally got Veoza !!!!!! I’m paying for it privately, our healthcare said : what is this , never heard of it ?! Anyways I suffer badly on this forced menopause and I’d like to have a night without severe hot flashes and sleeping on towels. Just started , I’ll update you all later on because apparently it takes 2 weeks to show effects.

We keep hanging in there , love to my K sisters out there xxx

Hello all,

just checking in after finishing the first cycle. Fortunately, I have been able to tolerate the medicine well, no serious side effects besides fatigue and occasional headaches, though I believe the latter were due to low HTC during the break week. My genetic test results were also out and there are no mutations, the doctor said that it's unlikely that my cancer would mutate in the future. The first restaging ct scan is scheduled for the end of January so it'll live rent-free in my mind now throughout the holidays and longer 🙃

Mentally, there are still dark days (that led to a hypothyroidism flareup) but it's important that I now recognise when I drift too far away and try to occupy myself with something else. Cancer is such a mind f*ck because often it's something that just happens at random and can't be prevented.  We're so used to controlling so many facets of our lives, including our health to a certain degree, that when something like this happens, it's really hard to process and accept.

I hope everyone here is doing well and hope the new year will bring us all closer to our treatment goals, new and effective medicine and, why not, a cure.

Keep fighting,

Elena

Hey @eddiej and @cskinner

I really wish we would’ve met under different circumstances as well. Yeah the cryfests and panic attacks have been the new norm now..

Due to my tumor’s high proliferation, everything happened in an instant. They told me I was fast to act but the cancer was faster.
I will try to join the young patients support group. I live in Germany so hope I’ll make it work with the time difference. Thank you all for suggesting this.
Sending you positive thoughts,

Elena

Hi @elena_p - welcome! Wish we could have met under different circumstances. I was diagnosed with stage 4 from out of the blue in Jan of this year. No breast cancer in my family on either side. I am on this treatment as my first line and have been having successful results. I am also blessed with an amazing husband and very supportive family and friends. Since I do not look sick or act sick, I have been able to live my life as though I have a chronic ailment, as Tough mentioned above. I am not as physically active as I used to be but I still play pickle ball, spin class every once in a while, multi-mile walks with our new dog and resistance training to keep up muscle strength.

You will come to learn how do deal with your new normal in your own way. This forum here is such a wonderful place to connect with others who are dealing with their new normals or who have been here for years ( these women give me so much hope that it is possible to manage my panic attacks). You learn so much, feel fully supported and welcome whether you post and interact everyday or just once in a while.

Definitely check out the other topics! You will start to recognize names, learn important helpful relevant info, know stories and come to feel like you have a new community and new friends.

Stay in touch! Have a great Tuesday! juliana xo

@elena_p Sorry to welcome you to the club nobody wants to be in. Fortunately, these new-ish drugs are game changers, and hopefully you can treat this as a chronic disease rather than a death sentence and live a very full life.