Stage IV NED crew : lets support each other
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I’ve seen some people say switching to a brand name anti-hormonal sometimes helps with side effects because the inactive ingredients can be different.
Brand name anastrozole (Arimidex) is pretty cheap so I might try that, it has to be outside of insurance in my case though. There’s an online pharmacy that sells it for $60.
Not sure if that’s a possibility for you with Aromasin maybe worth exploring .
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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.
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Thank you. SeeQ, yes, I am/was bone only. I spoke briefly to my MO yesterday only long enough for her to let me know she is hesitant to change anything right now but is going to research some options. I will find out more about that next week at my appointment. I think her main hesitation is that should I have a progression, she doesn't want to burn through options that may help fight that and I agree. I did a trial of Cymbalta and did poorly with it. It made me a zombie. It could be that I'm in a roll up my sleeves and deal with it situation. I will definitely ask about switching to name brand if insurance allows. I've tolerated the 150 mg Verzenio really well. Never got the GI upset with it. It may be a player in my fatigue so I'll ask about that too. Thanks.
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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.
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GoKale, I am not sure what metric this group uses as NED. All of my tests show no active evidence of cancer/spread in my body, but my Oncologist has never said there is NED. I have been using therapeutic keto nutrition, with time restricted eating windows (generally 18-23 hours with 1-2 nutrient dense meals a day), with as much physical activity I can fit in and tolerate. In addition I use infrared sauna sessions (generally 1-3 a week for an hour at a time. At the time I started working with my current Oncologist my cancer was spreading rapidly, even though I was following a keto approach and working with a Naturopathic Physician. She had me on a very restrictive diet and about 30 different supplements and injections a day.It was when I switched up my plan and stopped working with the Naturopath that my cancer disease burden improved.
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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.
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waves, 30 different supplements and injections a day, YIKES. I'd think about quality of life and if that all would be worth it. The rest of your plan sounds great, although I have only once fasted 24 hours since I started intermittent fasting about a dozen years ago. Most of the time I go for a 12-14 hour fasting period overnight. I've learned though that it is still important to maintain a calorie deficit or balance if you are trying to lose weight or maintain, respectively. I cut back from a 16-18 hour window because I had a tendency to overeat thinking I'd be starving til the next day. I still do an 18 hour fast every once in a while.
gokale, I've had the same problem in starting sedentary hobbies. I bought a sewing machine during our first wave and lockdown last year and I have yet to sew something. I think will tell myself I can do 5 minutes of HIIT or ab work or running up and down the stairs after an hour or a half of sewing.
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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
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Scan day for me tomorrow. Wish me luck. Hope I remain part of the NED crew. Fingers crossed 🤞
EDITED CANCELLED!!!! STILL WAITIN
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Olma61 - best wishes for continued NED!
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omg thank you but I just got off the phone with the imaging center and they’re still waiting for insurance approval!
Appt postponed…more waiting 😒
Thanks again for the good vibes thoug
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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.
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Thank you, Elderberry! Onc's office says it should be all done by next week so I have an appt for the 13th now. I am pretty sure it WILL get approved but they make the doctor's office jump through hoops every time. They have to have a peer to peer consult - my doctor with a doctor who contracts with the insurance company.
You'd think after four years it would be oh, okay we know this patient has MBC and is being monitored every six months -- but no, that ain't how they do it!
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scan result = I’m still in the NED crew 🙏🏼🎉
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great news Olma!
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thank you
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Olma, great news on your scan results!
My scans are tomorrow, early morning.
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April thanks and sending good vibes for a positive scan result
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Scan results- still in the NED crew! Olma, thanks for the good vibes:)
I have to say, I like having my scans in the early morning. I got my results pretty fast. Onward!
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YAY!!!
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great news aprilgirl!
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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.
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Congrats aprilgirl1! After I was at NEAD for a year, my MO reduced my scans to every six months. I don't remember how long you have been NEAD but maybe you are getting closer to being able to reduce your scanning. Again...congrats!
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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.
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As alwasy, fabulous news Aprilgirl:) May this last forever! Saulius
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Great news, aprilgirl! Fabulous way to start the new year!
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Hooray, April Girl
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Great news aprilgirl!
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Hello NED Crew, when I started this thread back in 2015 I did not imagine for one minute that it would keep on rolling for so long! I am overwhelmed by this fact, that the thread has allowed so many people to connect and share information and support each other.
Sadly I am never going to get back to no evidence of active disease again, but I am still here, metastatic bc since March 2014! I am still on chemo and still chugging along despite various progressions and treatment switches, including surgeries, radio therapy and an ablation. I will continue to pop back to take a look at the thread and say hello now and again, But in the meantime, please carry on everyone, stay healthy and share how it is positive to reach no evidence of active disease. Love and light to you all, wherever you are in this strange, wonderful world.
Boo 123
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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
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