Abemaciclib Verzenio for Stage IV

WenInWI

mikainsb and emac877,

I went from 150mg to 100mg BID at the 2 month mark, then stayed on 100mg for the rest of my run (total 2 yrs 3 mo) and I never progressed. I went off Verzenio and switched to Ibrance (my decision) only because of accumulating side effects.

mikainsb - I figured out how to manage the diarrhea, but the side effects I could not turn around were those related to mal-absorption of nutrients (my assessment). Nothing I did to reverse the low albumin and low protein blood levels worked, even eating 120 gm of protein per day (that's a lot of protein). I also became B12 and Vit D deficient, but was able to turn those around with sublingual supplements. You may want to ask your doctor (maybe your primary doctor) to check your B12 and Vit D levels. My B12 fell to the point that I started struggling with anxiety and depression, which I learned can be associated with B12 deficiency.

IntoLight

seeq, Even at 100mg I have my bad stomach days. Today was one of them. I woke with terrible stomach cramps, cold sweats and was very dizzy. That is unusual for me but I got through it. I am looking forward to a better day tomorrow. I should try GasX---haven't used it in awhile. I also had a doctor tell me to try the easy way and take Pepto Bismal. I does help me sometimes. Chris

SeeQ

Intolight - I use the Gas-X mostly after I've taken immodium. Even though I take the multi-symptom version, I still get crampy later in the day, or the next day even. I used it years ago when I was dealing with IBS-D, and it helped for that.

Weninwi - I had low B12 and D for many years before bc dx. Supplements brought me up to average on B12; low average on the D is the best I can do. The D3 supplements had a huge impact on the IBS-D. I still take both, with my MO's awareness.

WenInWI

To All,

Has anyone tried the Dana-Farber Cancer Institute Online Second Opinion Program? What was your experience? Would you recommend it? Was it worth the $2400 cost?

WenInWI

seeq,

You may want to consider sublingual Vit D and also B12. I took Vit D3 4,000 i.u. gel caps for years (prior to Verzenio) and was always able to keep my level around or above 30. I never had low B12 before taking Verzenio. After starting Verzenio both my Vit D and B12 dropped quite low. When I went shopping for new supplements I visited a homeopathic herbalist practitioner who has been in the business 25+ years locally and has a background in chemistry. He told not to bother with either Vit D or B12 as oral supplements and instead to use sublingual. I followed his advice and got great results. The brand I use for both is Superior Source, available on Amazon. Very reasonable cost. Because my Vit D fell quite low I started out taking 10,000 i.u. for a few months to get my level up (above 50 is recommended especially for covid). I then had my level rechecked - it was 68 and my Primary doctor said that's high enough so I switch to 5,000 i.u daily.

IntoLight

seeq, My D3 and B12 levels remain constant as long as I take supplements. My oncologist and infusion nurse insist I take them. Thank you for the advice on Gas-X. I will try that.

I saw my oncologist Wednesday and she wants an MRI tonight to check on my back pain. (Crazy to have an 8:30 pm appointment.) I had my Zometa infusion and Faslodex shot yesterday so I am in a lot of pain today. I would appreciate your prayers.

WenInWI

intolight,

Are you still taking Everolimus (Afinitor)? How is it going for you in terms of side effects and measures to reduce or handle effects? I'll be starting soon.

Wendy

IntoLight

Wendy, I was only on Everolimus for three months and developed an allergy to it. Gave me pneumonitis and put me in the hospital. But it is good for some people. I am on Verzenio right now and it seems to be doing the job. The side effects are way less than other meds I have been on...mainly diarrhea. But I did need a dosage reduction pretty quick because of extreme fatigue. I just had an MRI last night because of some back pain so we shall see if it is related or not. My last scan, two months ago, showed no active disease so I am pleased. Good luck with Everolimus. Let me know.

Going2BeatThis

Wendy, did the homeopathic herbalist practitioner you saw suggest taking K2 along with the D3? I have been told that the K2 is needed in order for your body to fully absorb the D3.

Thank you for sharing his recommendation to take both Vitamin D3 and B12 sublingual. I have been taking D3 for over 10 years and have gotten my D level up to the mid 50s. Would love for it to be in the high 60s.

Intolight, I have had excellent results from Verzenio also. Was initially going to start Kisquali but after mentioning headaches to the MO on my first visit, I was sent for a brain MRI which showed 2 lesions in the front of my skull (nothing in the brain). Because of that, I was put on Verzenio instead. Started with 150 mg twice daily in March 2021 after starting Letrozole in Feb 2021 (diagnosed MBC de novo in February 2021 after having breast cancer cells found in both the fluid extracted from my pleura and in a breast tumor). Had Mets to both iliac bones. pleura, 3 lymph nodes,some small lyric osseous mets and to my left mandibular condyle. My makers came down fairly quickly (CA 15-3 within normal range by April 2021 and CEA within normal range by Aug. 2021). In March of 2022, we decided to do a doseage reduction to 100mg twice daily since I was experiencing extreme fatigue. My markers are still great (last readings in July were CEA 1.4 and CA 15-3 10.7). My last PET scan (May 2022) showed I was NED and my last brain MRI (June 2022) showed one of the lesions in my skull has disappeared. I have most of my energy back since doing the dosage reduction.

As to dealing with diarrhea, I am happy to be able to say that I’m in the 19% that did not get it! I attribute that to the following:

~ I take a high concentration of probiotics. It is Bio-K Plus and comes in a 3.5 fl. oz. bottle. I drink 1/2 in the am and 1/2 in the pm. I buy the 12 pack and try to find sales/discounts.

~ I drink a lot of water daily and in fact, drink about 24 ounces with each pill I take.

~ My very positive attitude. I told myself every morning that I was not going to get diarrhea today. My body listened

Hope this helps with your diarrhea!

WenInWI

goingtobeatthis,

Yes, the herbalist recommended K2 MK-7 and SuperiorSource offers it in 100 mcg sublingual form on Amazon. I notice they also offer a 300 mcg dose, but I'd recommend sticking with 100 mcg. I've decided to get my K2 through grass-fed dairy.

I also had a good response to Verzenio - most notably my liver tumors shrank. I went from 150mg to 100mg fairly quickly due to diarrhea. I eventually learned how to control and manage the diarrhea, but not until after I developed malabsorption problems and ultimately thickening of the bowel wall, so I made the decision to stop after 23 months. I was given terrible advice from my MO team on how the control the diarrhea when I started the treatment and I didn't figure out a better approach until I came to this website. Obviously you're doing what is needed. I hope you get a long run on Verzenio.

Wendy

IntoLight

I just saw the results on my portal from the 1 1/2 hour MRI I had done last night. I have a metastasis lesion on my T5 that is 11mm and one on my T12 that is 1.7 cm. Obviously I have no response from my oncologist yet, but I will wait for her response. They explain my back pain. This is the first progression I have since being on Verzenio, but I have had lesions in these spots before so I am not sure they are new. I am not ready to give up on Verzenio yet. We shall see what she says.

emac877

Intolight - I'm sorry to hear about the progression. Let us know what your MO says. I have a met at T8 that caused a compression fracture and while it's not active anymore it's a painful sucker, more than any of my other mets most of the time. Hopefully you can stay on Verzenio if it has done well for you.

IntoLight

Thanks emac. Actually, my oncologist wants to try radiation of those spots which is ok with me. Then she wants to switch me to IV Chemo soon--like next week. This will be my first IV chemo since I was diagnosed so I am not too excited about it. But I am a fighter and will join the rest of you who have been this route. I appreciate your tips and your prayers. That means I will be leaving Verzenio. I was hoping for a longer run but that is not to be. Take care.

Nkb

int the light- sorry you have to change- I had some radiation to a few rogue bony mets and was able to extend my time on xeloda by over a year. My TMs were going up and down slowly and went down after rads.

Did my first TDxd (enhertu) infusion today. hope it works!

what do they want to change you to?

IntoLight

nkb, they want to change me to gemcitabine (IV chemo). I have been on five different oral chemos and the last couple did not work long. They also want to do another PET to see if I had any progression anywhere else. Prior to this I was NEAD. I would like to stay on Verzenio but my onc is reluctant to allow more progression. She feels I would have better results changing. I actually expected this change last March but we decided to try Verzenio even though I was on Ibrance for four years so this is no surprise. It has been over six years since my de novo diagnosis of Stage IV so I have done well so far. I am still pretty strong.

Nkb

Intothelight- are you Her 2 low by any chance? From original biopsy or any subsequent biopsies? that is Her 2. 1+ or 2+ and FISH negative- read out as Her2 negative in the past. About 55% of breast cancer is supposedly Her2 low which opens up the use of Enhertu (TDxd) which has a very good track record so far. I would check into that. The trial that got the approval was Destiny04.

I am glad that you got the time on Verzenio- every 6 months we can hang in there- something new may come along like the TDxd and many other similar ADC (antibody drug conjugates) that can target other proteins besides the Her2. Good to do things while still strong,