Topic: Abemaciclib Verzenio for All Stages

Forum: Managing Side Effects of Breast Cancer and Its Treatment —

Posted on: Sep 28, 2021 02:04PM - edited Sep 30, 2021 06:38AM by seeq

Posted on: Sep 28, 2021 02:04PM - edited Sep 30, 2021 06:38AM by seeq

seeq wrote:

I've noticed there is a Verzenio discussion in the Stage IV only section, and another in the Stage III forum. I'm starting this thread because I think there could be a benefit from sharing between all the stages - especially when, and if, Verzenio becomes a more common standard of treatment.

I started Verzenio 14 months ago. I had a couple of large tumors, plus lots of smaller ones in my liver, and then they found a little (15mm) tumor in one breast. After 7 months on Verzenio (150mg x2) and anastrozole, I was NED (by PET-CT).

I've had a little low RBC and WBC, but nothing that required a break in treatment.

The SEs were not fun - extreme fatigue, food aversion, and of course, diarrhea - but the results are well worth it IMHO. A few months later , I requested a dose reduction (100mg x 2), because the big D was becoming more of a problem. While I still have fatigue, I feel much better and the D is manageable again.

In the interest of keeping the discussion friendly, I do request that there be zero political comments and COVID discussion limited to the impacts between COVID and Verzenio. Thanks.

SeeQ


De novo diagnosis with large/numerous liver mets. Breast lump identified one month later. Hormonal Therapy 7/3/2020 Arimidex (anastrozole) Targeted Therapy 7/10/2020 Verzenio
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Sep 28, 2021 03:13PM juju-mar wrote:

hello all! I just got insurance approval to begin Verzenio. I am taking anastrazole and Claritin daily (for year round allergies). My MO wants me to start at 200mg twice a day - I have a question into her as to why so high? Even the Eli Lilly website says 150mg twice a day is the standard dose. Wondering that dose everyone started at? My tumor was 6cm, 2 + nodes, grade 3, stage 3A. I'm so excited to know there are more treatment options. I have Crohn's disease, so diarrhea isn't something new, although I have been in deep remission for over 25 years.

Julie

Dx 8/27/2020, IDC, Right, 6cm+, Stage IIIA, Grade 3, 2/4 nodes, ER+/PR+, HER2- Chemotherapy 10/27/2020 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Radiation Therapy 6/14/2021 Whole breast: Breast, Lymph nodes
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Sep 29, 2021 02:31PM 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.

Dx 2/27/2020, IDC, Left, 2cm, Stage IIA, Grade 3, 17/28 nodes, ER+/PR-, HER2- Chemotherapy 4/27/2020 AC + T (Taxol) Surgery 10/22/2020 Lumpectomy: Left; Lymph node removal: Sentinel, Underarm/Axillary Radiation Therapy 12/11/2020 3DCRT: Breast, Lymph nodes Hormonal Therapy 2/12/2021 Arimidex (anastrozole)
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Sep 29, 2021 02:47PM threetree wrote:

Is there any data out there that shows how much benefit people who are less than stage IV would get from taking this drug? Sometimes these benefits are as low as 2% and it does give reason to doubt, given all the side effects.

My oncologist wanted me to take Xeloda during radiation and I declined. I am highly ER/PR positive and all the data I saw said it can really help ER/PR- but only has about 3% benefit for ERPR+. I know many women in my situation still opt to take it just to cover all their bases, but it does require weighing just how much benefit a person would get vs the side effects. If I'd been triple negative, I wouldn't have taken it in a heart beat. I also told the oncologist that I might be willing to give it a try before or after the radiation, but not during, because I read that taking chemo during radiation can really enhance and increase the bad side effects of radiation. She pulled up the data and saw how little benefit there is for ER/PR+ and agreed with me that it wasn't much. She's never brought it up again.

So now they have Verzenio. Just how much benefit does it offer the different types of breast cancer and those who are not stage IV? I also wonder just how many of these drugs we can use in lower stages, and then not have many options left if we become stage IV? If some of us used Verzenio and Xeloda now, would those drugs still be available again if the cancer progresses?

I try not to be super negative about all of this, but it's hard to not think that there is a lot of drug pushing for profit going on in this business. And re side effects vs quality of life, just how much is a person supposed to take?

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Sep 30, 2021 02:54AM - edited Sep 30, 2021 03:13AM 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)

De novo diagnosis with large/numerous liver mets. Breast lump identified one month later. Hormonal Therapy 7/3/2020 Arimidex (anastrozole) Targeted Therapy 7/10/2020 Verzenio
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Sep 30, 2021 04:44AM - edited Sep 30, 2021 04:45AM by scaredme

I will be re-starting Verzenio in a few days, at a reduced dose (100 mg 2x/day). I was originally on 150 mg 2x/day but had issues with low WBCs and had to take a break (then had a root canal). I did experience fatigue, stomach pain and occassional diarrhea. I am on the fence about continuing (I feel so good during my break from it!), so we will see how I fare with the lower dose.

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Sep 30, 2021 10:06AM 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"?

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Sep 30, 2021 10:19AM threetree wrote:

SeeQ - Just read the article and once again thank you very much. It was very informative. It actually underscored my concern that this is all too premature for my tastes. I think they need to wait for a lot more follow-up data before they go giving it routinely to lower stages, even if they are "high risk".

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Sep 30, 2021 10:51AM 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

Dx 8/27/2020, IDC, Right, 6cm+, Stage IIIA, Grade 3, 2/4 nodes, ER+/PR+, HER2- Chemotherapy 10/27/2020 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Radiation Therapy 6/14/2021 Whole breast: Breast, Lymph nodes
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Sep 30, 2021 12:44PM threetree wrote:

Just wanted to add a corrective note to something I said above. I realized after I typed it that the Predict 5% is relating to overall survival, i.e. the Letrozole supposedly gives me a 5% more likelihood of being around in 10 years, whereas the oncologist's comment about a 30% risk reduction, I believe refers to recurrences, not overall survival years. I think I might have been comparing apples to oranges. It still doesn't make sense to me.

Would the Verzenio 30% reduction be in addition to or alongside that of the AI treatment. The article says the Verzenio group got 30% benefit, but that it was about the same as the "just AI" group. So is there really any true benefit beyond that conferred by the AI?

None the less, Verzenio would definitely be an individual decision of course, but to me, the data really seems awfully rough and premature at this point.

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Sep 30, 2021 03:37PM 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.

De novo diagnosis with large/numerous liver mets. Breast lump identified one month later. Hormonal Therapy 7/3/2020 Arimidex (anastrozole) Targeted Therapy 7/10/2020 Verzenio

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