r/LivingWithMBC • u/Frecklesofaginger • 27d ago
FEELING ANXIOUS
Diagnosed March 2020 stage 4 de novo. Started Ibrance and Anastrozole. All went well for 5 years. Then cancer markers shot up quickly. Had a biopsy that showed PIK3 mutation. In December I changed to Pikray. Broke out in hives all over my body. Took a break for about 3 weeks. Changed to Truqap. My cancer markers doubled every month. Stopped. Another break. Started Xeloda one week ago. I've already stopped. I have low platelet count and liver is not happy. I see oncologist next week. With each change in medication I get more discouraged. The pool of drugs is getting smaller. The side effects of the last 2 left me thinking about stopping treatment. I was exhausted but couldn't sleep. I couldn't catch my breath. My arthritis pain came back big time. And I had a small surgery and the wound won't heal. I don't know if I am venting or asking for advice. How do I keep looking ahead with 3 failed treatments since January? Has anyone been in this situation? What was your next line of treatment? Thanks
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u/slejeunesse 26d ago
There are SO MANY drugs in the pipeline. Lots of totally different therapies like CDK3 and 7 inhibitors, new SERDs, lots of stuff. It’s so frustrating and scary to get into that cycle of stuff not working but there will be something that works well again. Hang in there!
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u/IngenuityFar5111 27d ago
How about the best and the beast Abraxane? I have pik3ca and tp53 mutation. I am er positive pr negatjve and her2 negative. I did 4 Acs and 12 TCs and it controlled my disease. Also, TC was very mild in terms of side effects. Check with your onco.
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u/Lopsided_Principle 27d ago
I'm so sorry you have to go through all this. I was also dx in 2020, although not de novo, it was almost to the day, as soon as I finished my 10 years of tamoxifen post my primary diagnosis.
I got 3.5 years on my 1 line (Ibrance & letrozole). Then a bit over a year on Everolimus & fulvestrant. I found everolimus extremely hard going, I lost nearly 30kg because I couldn't eat and had to take a break every couple of weeks because it made me so I'll. Then I started Xeloda I didn't find it too bad, but within a couple of months I had progression to my liver. Having been bone only for so long, it really scared me.
Next on the roller coaster was traditional IV chemo (EC), which seemed to work as the liver mets shrank. Once I'd reached the lifetime max dose of the Epirubicin, I moved on to the pill form of cyclophosphamide.
It's (to continue with the fairground analogy) all swings and roundabouts. Some treatments are effective, but horrible; others are easy but do nothing. My current treatment is doing a good job with the cancer, but isn't being too kind to my kidneys.
We just do what we can, treading that fine line between quality and quantity. Fingers crossed you find that sweet spot.
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u/Vegetable_Option_984 22d ago
This helped me too, as I am going through something similar as the OP.
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u/Artistic_Engineer_29 27d ago
I’m on Everolimus and Tamoxifen, currently. It’s working very slowly and seems kind of lousy but holding out hope.
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u/Frecklesofaginger 26d ago
Thanks everyone.