Sep 29, 2021 11:31AM nmj55 wrote:

Hello. I am new here. My Oncologist is recommending I start Verzenio . I am actually in remission at this time. However, my cancer was very aggressive. After AC&T, the tumor shrunk but it did nothing to the cancer cells in my lymph nodes (left side) and therefore had all removed. 17 of 28 still had cells in them. She said they are using Verzenio on patients with my type of cancer even though I had a clear mammogram last week. I was very sick through the chemo and had every side effect known, even toe nails falling off. I was out of work for almost a year and luckily had LTD to help me get through. I am concerned about the side effects of Verzenio especially with the stomach. I know everyone reacts differently. She said she would start me out at 100 mg twice a day to see how I react and can stop it if it's too much. I was wondering if anyone had a problem with working while on it? I hear the D is the worst part but also read about GI issues. I am also on Arimidex, Allegra an Nexium and have recently developed lymphedema and am getting fitted for a sleeve. She is also recommending Prolia because of the Arimidex. Early stage of Osteopenia . Somehow I don't feel like I am in remission with all of these meds. I know I am luckier than a lot of people but it can really get you down sometimes.

Sep 29, 2021 11:54PM - edited Sep 30, 2021 12:13AM by seeq

ThreeTree, This link is from the National Cancer Institute at cancer.gov from January of this year. I've provided the text URL to cut and paste, in case you'd prefer that over a hyperlink (if it works).

Trial Tests Abemaciclib As New Option for Early-Stage Breast Cancer

https://www.cancer.gov/news-events/cancer-currents...

"...most of the time the cancer is classified as HR positive and HER2 negative. Although the available therapies for this type of breast cancer are very effective, a portion of patients are at particularly high risk of their cancer returning, or relapsing, in the years following treatment.

The new findings from the study—a clinical trial called monarchE—suggest that for people at high risk of relapse, adding abemaciclib to their treatment regimen may decrease the chances of their cancer coming back.

Participants in the trial who received abemaciclib for 2 years along with standard postsurgical, or adjuvant, hormone therapy were about 30% less likely to have their cancer come back in an invasive form than participants who received the standard adjuvant hormone therapy alone."

(edited to clarify the source)

Sep 30, 2021 07:06AM threetree wrote:

SeeQ - Thanks very much for the reference. I'll take a look at it.

I am really bad with statistics and don't always get the "real" translation of it all. My oncologist said that Letrozole would lower my risk of a recurrence by 30-40%. However, when I put my stats into the Predict calculator it showed only a about a 5% benefit at about 10 years, from taking it for 5 years. That seems to be very different from what the oncologist said in "real" terms.

If Verzenio also lowered risk of recurrence by about 30%, what would that translate to in something like the Predict calculator? Also, is this on top of the 30-40% risk reduction of Letrozole or in addition to, etc.? It gets real confusing to me.

My oncologist told me that I was a high risk for a recurrence. I'm supposed to see her in a week or so, and after reading the above posts, I'm getting concerned that she is going to try to push Verzenio on me now, and it doesn't sound like I'd be crazy about taking it.

I also still have reservations about using up all these drugs in lower stages, since I have not seen anything about whether they would still be viable and effective if a person reaches a later stage and has already used them. Don't we need to keep some of these things in the arsenal for down the road "just in case"?

Sep 30, 2021 07:51AM juju-mar wrote:

thank you for sharing the article. What I interpret is that the med may delay recurrence in certain situations. It's up to each individual patient to discuss with their MO. For me, I am considered early advanced and have a higher risk for recurrence due to the tumor size, grade, lymph node involvement and high percentage of Ki67 protein. I'm looking forward to trying it. I have wondered why treatments haven't gotten much different over the last 30 years. My aunt had DCIS in the 1980's and she had the same treatment plan as me in 2020! The pre-meds for chemo have gotten better, but the 5 and 10 yr survival rates are similar to what they were when she was diagnosed. I feel like early diagnosis has gotten better, but long term survival hasnt

Sep 30, 2021 12:37PM seeq wrote:

ThreeTree - I'm not very good with stats, either. I just see the part that says nearly 30% risk reduction with abemaciclib and that seems to be comparing it to the group on standard treatment. For me, I'm all for anything that increases PFS and OS and maintains decent quality of life. I think your perception of what is considered decent evolves over time.

I don't know what the Predict calculator is. I'm assuming that may be because I was diagnosed de novo Stage IV. As far as the calculators for the risk of getting bc in the first place, I score very low, so go figure. It was a big shock for everyone.

Jujumar- you're right. Survival rates aren't changing enough. The rhetoric and funding need to change from awareness (unless you're living under a rock, you're probably aware) and early detection (again...duh) to an actual cure.