Stage IV NED crew : let's support each other

emac, I reached NED after 7 months on Verzenio and anastrozole. Two months later, I asked my MO about reducing to 100mg Verzenio for the SEs, especially the big D. I've been on the reduced dose for about a month and I'm surprised that I feel so much better - besides fewer bathroom trips. I still have some fatigue, but I feel better. I don't know if I could/would have asked for a dose reduction before NED. I would always second guess the decision (I still worry some).

Generally, I think you stay on a treatment as long as possible - unti it stops working- and then you stay on the next one until it stops working, and so on. I know there can be local treatments available for liver mets...but you're bone mets only? I don't know about that.

Per the packaging (and 1 or 2 ladies here), Verzenio can be prescribed solo (at 200mg), or with an AI. I don't know the deciding factors.

My MO stretched my scans to 4 months, and may go longer for the next one.

Emac, maybe you have done this already: Have your onc check and rule anything else that may contribute to fatigue: vitamin D level, iron level, thyroid hormones, adrenal-cortisol axis hormones, etc.

My story: Last year I was a couch potato more than usual, and I attributed all the fatigue to cancer treatment. Also at that time I was having unwanted hair growth, so my onc sent me to the cancer center endocrinologist, and she checked various hormone levels, looking for excess androgens. We found no hormonal explanation for the hair growth, but we learned that I was suffering from adrenal insufficiency. My body was not producing cortisol as it should. We did not find a particular cause but theorized it may have been caused by a steroid drug I had been on for diarrhea caused by my treatment. In any case, I was given some low-dose hydrocortisone pills to sort of boost me while my own cortisol production came back online. That brought me back to just "normal" fatigue level and I felt so much better, and got up off the couch. Eventually my body righted itself and I weaned off the cortisone. (It turned out the hair growth was hypertrichosis, a known but not very common side effect of one of my drugs, neratinib. The cancer center dermatologists recognized it and helped me with strategies to deal with it.) So, my point is, rule out other, treatable causes of fatigue that might be layered on top of cancer or treatment related fatigue.

WavesOfHarmony - thank you for this information. It is encouraging that you have reached NEAD status in a short amount of time. I just recently increased the amount of time-restricting eating from about 14-15 hours to 16-17 hours. I should press on to increase it more. I have been really committed to exercise for decades, but stepped it up after my first diagnosis. Just recently, I pondered how to balance it more with hobbies (I do count exercise as a hobby but some of my hobbies aren't movement at all, yet I would like to carve out some time for them).

So glad that Ibrance, Arimidex, exercise, time-restricted eating, and infrared saunas are so helpful to you. I will have to look into infrared saunas to see if there are any in my area.

Heidihill,

Diminishing quality of life and an accelerated spread of my cancer are reasons why I stopped working with this Naturopath. In addition, she wanted me to go to the Oncologist and dictate which medications I wanted. Once I got those medications she didn’t want me to take them as prescribed and only take them for 2 months. Essentially she wanted me to lie to the medical team, which was something I wasn’t willing to do. When I to,d my Oncologist all of this he just shook his head and said that this type of plan would have opened the floodgates for my cancer. He said that my cancer had already gotten such a good hold in my body that any natural treatments alone weren’t going to do anything

Olma61 - best wishes for continued NED!

Olma: oh dammit. I won't say more because then I go on a rant about in spite of its flaws I am happy to be in a country with universal health care. I hope you get it done soon and will continue your dance/romance with Lt. Ned.

scan result = I’m still in the NED crew 🙏🏼🎉

thank you

April thanks and sending good vibes for a positive scan result

YAY!!!

2022, can't believe it! I had scans mid December and the results were good - still NEAD. I know it can change on a dime but think it's important to celebrate these small miracles, especially for new MBC patients. My next scans must be mid February? Ironically, when scheduling the December scans my oncologist said we could postpone a couple of weeks as scans can create stress and I could enjoy the holidays more.....ummmm for me, I want the scan to be done and reviewed and then I have less stress - putting it off by 2-3 weeks???? No thank you.

yay, great news aprilgirl ! Im also scanning every 6 months, my MO started that fairly soon, after my first year and two or three NED scans.

Great news, aprilgirl! Fabulous way to start the new year!

Great news aprilgirl!

Dear Boo123, you were our inspiration when I came to these forums in late 2017, and I remember you well. Thank you so much for this thread. We are so happy to see you back. As for NED... never say never - science makes huge leaps forward, and, at least I believe, we all stand a chance in the nearest future. Let's hold on therefore. Lot's of hugs,

Saulius