Abemaciclib Verzenio for Stage IV
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...I also made the point that continuing to supply me at this point wasn’t going to be a long-term drain on their program because how much longer can I possibly respond as monotherapy?
So my point was they ought to own their mistake and keep letting me have Verzenio until I stopped responding.
I don’t know if my oncologist’s pharmacist relayed the message, but 24 hours later, my oncologist informed me that Lily unexpectedly reversed their “final” devision
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Damn straight, luce, that an ethical argument should be made for your case! I have every reason to think your logical reasoning made all the difference in getting the Verzenio approved. Probably someone who did the talking wants the credit, but it's luce for the win.
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Luce -- I am so happy for you! Your story with this is mind boggling and so maddening. I fully agree with the statements that to deny anyone a drug that is working, especially in your case with so many complications, seems morally and ethically wrong. I'm glad someone pulled their head out of their ass and did the right thing for you.
Cure-ious - thank you for all the info on the trials. I am following that closely also. I'm newer to the metastatic category and it seems like the best option we have at this point is information so thank you.
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I went to the ER this morning because my shortness of breath has not subsided after 11 days off Verzenio. I also still have no appetite and continue loosing weight. Blood work, cat scan of head/lungs and ekg show nothing out of the ordinary so I was admitted to the hospital while they try to figure things out. I am at my hometown hospital which is different than where my onc is because she is an hour away so I don't know how all this will pan out. But they got a full history on me here. They aren't sure why my resting heart rate is so high. I don't smoke or drink or take many other meds. I have no pain and feel fine while resting. I worry that I stuck it out with that Verzenio too long ignoring symptoms. I hope I can get back to feeling normal within a short period of time
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Wishing you nothing but the best Devine, please keep us updated. Sorry you find yourself in that predicament, especially when you feel generally ok.
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Divine: Can a CAT scan reliably diagnose pneumonitis/ interstitial lung disease, or lack thereof? CDK4/6 inhibitors can cause pneumonitis.
(I most likely had undiagnosed pneumonitis from an immunotherapy drug two years ago, by the way.)
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Luce, I discussed this with the doctor and np who say the cat scan looks clear of everything including any mets (which I was glad to hear).
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Divine, is there any chance that you might have microtumor cells in your lungs? They are not seen on CT scans or Xrays like emboli.
A VQ scan helped diagnose me. The gold std is a lung bx, but in my case, my breathing was already compromised, ie, shortness of breath. I also had a dramatic drop of O2 saturation with minimal activity, like walking.
Thinking of you while you unravel this mystery.
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Divine, did they check your hemoglobin? I'm experiencing similar symptoms, shortness of breath and extreme fatigue, because my hemoglobin is very low. Wishing you the best!
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Divine.
I’m so sorry to hear that things have not improved with the SOB. I also experience this symptom so feel (hope) it is nothing ominous and that you just need more time. As I mentioned in an earlier post, I was shocked by how long it took to improve after only two weeks on this drug. There is no doubt that it is a hard #@$& treatment. Hang in there. Feel like we held each other up through some tough days so know that I am here thinking of you.
Update on my situation - MO has further reduced my dose and will be assessing creatinine and eGFR weekly for the next month. Waiting for the requisition and will then see if the renal function numbers are better, the same or worse. It’s always something!
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I think my pneumonitis was evident in a chest x-ray (this was a few years back when I was on Afinitor)
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Divine - thinking of you and hoping that the doctors can get some answers soon.
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Thank you, all of you, for your support and words of comfort! Here is the latest. The doctor on the floor today said after reviewing all the tests etc. he thought maybe I needed a round of blood. He asked if I knew what my normal rbc count was and I wasn't sure but I get all my bloodwork done through this hospital system so he could access it. He came back with a print out that showed my normal counts are around 14 to 15 but are currently at 7.9. He said the lowered red blood count has to be what the problem is because all other tests are coming back negative. I get the blood sometime today.
My rbc counts continued to fall even after going off Verzenio:Feb 3 still taking Verzenio—. 9.6
Feb 23 (Yesterday) after 12 days off - 8.2
Today - 7.9
When I came to the ER yesterday, that's what I thought they'd do was give me blood. I guess they had to take the long route to get there or perhaps I had to find the right doctor to make the call.
The new blood certainly should have a good affect! Fingers crossed!
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Yes... that would do it. Good grief. As I mentioned, my RBCs dropped as well on Verzenio but, following advice from JFL, I started taking ashwagandha and a vegan iron pill. Not sure if that's what did it but my counts rebounded a bit at last measure.
Same thing happened to me with Ibrance. Once it got down to 8 my MO said "STOP". In retrospect, I wish I had tried to boost those numbers but he wouldn't let me go back on them. (Here they transfuse if it drops below 8.) It took months and months for my counts to recover.
Here's hoping you feel instant relief with some extra blood.
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Divine - thinking of you and sending good vibes and good energy that this blood does the trick and turns things around. I am still fairly new on Verzenio and didn't know the hard hit on the RBCs...seems like you are in good company as others have experienced as well. Will be sending prayers to you and to all of us who are dealing with this. For me now, they are watchful on my kidneys and may have to add something to my regimen to protect them. Always something......? Rest....
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Where do you guys get your ashwagandha? Do you take it in pill form?
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Hi Goldie. Yes, I get in a capsule from a local health food store.
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Brand? Cost?
I found this article, it's an "ad" but it is also a .org. Recommending the brand Pure, $39.00 for 1 bottle, 60 pills, one month supply.
https://consumershealth.org/ashwagandha-supplement...
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I got discharged last evening after getting blood. Thank goodness. I'd say I am at least 50% better and figure that will improve upon itself. There's no way I had time to allow any supplements to try to reverse the spiraling rbc count. I needed real, live blood, pronto. I looked back and easily saw how last November, even though it was exhausting, I was able to have 20 people in for Thanksgiving dinner, and over Christmas week I attended numerous family gatherings. But this past Saturday, I did not even have enough in me to take a relaxing country road drive with dh and sit in a restaurant for lunch, one of my favorite of life's little pleasures. My weight continued dropping and all I could do was lay on the sofa. That's a severe limiting of one's quality of life and I knew I needed medical intervention.
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Cross-posting this interesting discussion of what to do after progression on Ibrance-Femara, benefits of using Abemaciclib for some patients, but no biomarkers to say which patients will still respond. They did see that those with a good response to Ibrance tended to continue to respond to Abemaciclib, not surprising but is one indicator of who may benefit
https://www.onclive.com/peer-exchange/advanced-bre...
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Sadie, glad to hear your RBCs are slowly improving from ashwagandha and iron! Great news.
Goldie, that seems pricey for even top quality ashwagandha. When I researched ashwagandha, I had read that the amount of withanolides is the key and not to use a product that does not list the withanolides. I use Garden of Life myKind Organics ashwagandha, 60 tablets, 600mg ashwagandha root extract (30mg withanolides). It is $18 on Amazon right now. I chose this on quality only with no regard for price and would have paid more if necessary.
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Devine, glad you made it home.
JFL, I found this one on Amazon, but it doesn't say anything about withanolides, $13.99. 120 capsules, 1300 mg.
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Hi Goldie,
I'm in Canada so availability and pricing might be different but this is what I am taking: https://www.stfrancisherbfarm.com/products/ashwagandha-caps
It notes the withanolides and cost me about $20 Canadian for a months supply.
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Goldie,
I'm taking one that I got at Vitamin Shoppe. It's 500 mg, does state the withanolides (not as high as JFL's) and doesn't have any black pepper -- all root. I think I paid about $22 for a month's supply, but I'm not totally sure. This one is made in India, which oddly gives me some comfort because they know a lot about Ayurvedic medicine there. I ran it past my endocrinologist, whose grandmother was an Ayurvedic practitioner.
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Hello... It's been awhile since I popped in here. Just caught up from the last few months of the thread and want share my experience so far as well as what I avoid to keep Verzenio SEs at bay.
Luce: Was so relieved to see you got the drug approved after so many hoops. Ridiculous how much we have to advocate when facing something as horrible as this disease. Glad you are getting what you need!
Divine: Hope that you are managing OK since coming home from the hospital
SadieS: Glad to read that Verzenio is working for you!
Happy to see tumor markers dropping for many!
My first scan back in December after 40 days on Verzenio/Faslodex/Zoladex combo showed regression of lung nodules and mediastinal lymph nodes! Was SO pleased. My MO was very shocked! My CA15-3 was 40 and dropped to 35. (Low, I know!) I just had another scan this week and the lung nodules were all stable but the lymph nodes were growing again. Discouraging but I am not switching treatment yet. My CA15-3 remains low at 37. Going to stay the course and prepare for a possible TX change in May. To what - I don't know. I am almost curious to see if I can get Ribo just to exhaust the CDK4/6s.It has been about 3 years now since I was diagnosed with mets so I am feeling pretty relieved that I have been able to stick with easy enough treatments and my CA15-3 has never gone over 40. Though I have had mm of growth slowly over time in my lungs and nodes etc. The biggest lung spot was 1cm in Summer of 2017 and is 2.5cm now (mm growth while on Ibrance but stable in other areas) Mixed bag always for me! Lymph nodes have been primary concern as they affect my esophagus/ Trachea. But overall... doing fairly well and grateful for it
As for side effects on Verzenio. I am on 100mg x 2 day. My neutrophils are still not happy. 0.8-1.1 range and I have taken a few breaks of a few days or gone to one pill a day when I have developed mouth sores while traveling (I just got back from Hawaii right before the coronaVirus hit). My hemoglobin and RBC are also just shy of abnormal. I do find I get SOB and feel heavy in my chest sometimes. I occasionally feel nauseous in the mornings but it isn't too bad As for the diarrhea... thankfully I have only had 4 events of it in the 4 months of being on Verzenio and bathroom fun lasts 3-4 hours. Loparomide helps but then bungs me up. The things I avoid now as they completely bring on the diarrhea:- coffee, raw veggies, hummus, battered foods, cheese
I mainly am vegan so appreciate the info about ashwagandha and vegan iron pills to boost up those counts.
Anyways, wishing you all continued stability on this drug as well as minimal SEs... I think being on the lower dose is what makes it tolerable for me. And avoiding the above foods.
All the best,Ash
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Thank you ladies for your comments on the ashwagandha, not sure which one I will go with yet. I'm still new to the drug, half way into my second month. I feel great!
I got 5 years on Xeloda, I sure hope I get a long run on V.
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HI First I have heard about Ashwagandha and would like to know why a number of you are taking this treatment i.e what are the benefits - for cancer or for side effects and which specific side effects? Does your oncologist and pharmacist feel that it is acceptable to accompany the Verzenio medication as I feel I would need to mention it to them before trying it out. Thanks for any input or insights you might have.
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Hi nnc
It was recommended by others on BCO, along with a vegan iron supplement, to try to increase my red blood cells and hemoglobin. Low hemoglobin has become the bane of my existence, at least on the CDK inhibitors. I had to stop Ibrance after only a few months due to low Hb. I didn't expect to have the same trouble on Verzenio as it is not supposed to be so hard on the blood but still experienced a steady decline, albeit at a slower rate. Not sure if the herbal treatment did it but I was happy to see some recovery on my last blood panel. The thing is, so many of the treatments impact our counts that I feel I need to develop a strategy or I’m going to run through options rather quickly.
My MO was fine with this.
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Just looking at my labs, looks like I need the Ashwagandha, Folic Acid and Iron....and more water! TM's have come down a bit, but not as much as they did on the last labs. I guess ya gotta be happy with a decline, better than incline, right!
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Hi Ashlyn, Wecome back!! Is is possible for you to just get a little bit of radiation to the lymph nodes, to calm things down? I had minor progression at 3.5 years and we zapped the two areas and then I added Celebrex to beat back any developing PI3K mutated cells, and got some more time that way (another year and a bit, so far)
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