Abemaciclib Verzenio for Stage IV
Comments
-
Nicole and Sadiesservant - for what it's worth.... My Mo took me off Verzenio for a 2 week break because my creatinine started to increase (not scary increase but higher than it had been, ie 1.45 vs 1.2) and my ANC dropped to 1000 (from 1200-1400). She thinks my body just was asking for a break. After 2 weeks off, my creatinine is at 0.9 (where it started) and my ANC is at 1600. So, looks like a good recovery and I am back on Verzenio at 100 mg, 2x per day. Will monitor as usual as my body may need some breaks. Praying this keeps the 8 original liver mets quiet and the bone met. Now just biting my nails as it seems to take longer than it should to get set up for Y90 to treat the two new tumors.
0 -
Thanks for the info H&G. It will be interesting to see if the numbers jump right back up again now that you are back on Verzenio. As I indicated, mine went down to normal virtually immediately once I stopped. I assume it's something to do with the way the Verzenio is metabolized. Interesting...
0 -
I'm on day 10 of Verzenio, 150 mg 2x/day. Also taking Exemestane. Started off with some D but controllable with Imodium. Today I have had multiple D, took a couple of doses of Imodium, 2mgs and then 4mgs. My Creatinine was also high, 1.22. My MO said this wasn't the right test to look at for kidney function. She ordered a Cystatin test that looked normal.
At the same time, dealing with 2 liters of fluid in my right lung. Had half of it removed with Thoracentisis but it was too painful for me to do the whole thing. will try to do the rest next week. The heavy amount of fluid (4.4 lbs!) caused a lot of shoulder pain in addition to extreme shortness of breath and coughing.
Only found the fluid because I went for a liver biopsy. New liver tumor. Previous, recent tests and x-ray came back normal so they missed the 2 liters of liquid!
Wondering if I should ask for a dosage decrease. Seems like a lot of people are doing well on 100mg 2x/day.
Verzenio is my 7th treatment and I've never had such a bad experience. Have generally done very well on previous treatments.
Hugs, Susan
0 -
SusaninSF -
Hi Susan. The early diarrhea can often take weeks or more to taper off. If you check the verzenio website you can see the timeframe and they give some details. Some people can manage through it. I did but then about month 7 or so it got very very bad and I could not manage it, so I dose reduced and felt very human one again. Some people can tolerate 150 mg but others cannot. I was on the max dose of Imodium and max dose of lomotil and couldn’t control the diarrhea at 150 mg. With dose reduction, things were much better. I used Metamucil for awhile on 100 mg for some more regularity and now I stopped that and take an Imodium or two every couple days. So 100 mg much more tolerable for me.
The rise in creatinine is an expected SE for verzenio. You should take a look at the label/package insert to read on it and certainly your MO should be aware of it. It isn’t an indicator of your kidney function in this case. It should rise a bit and stabilize. If it doesn’t stabilize at a reasonable value then you might have more concern.
100 mg is certainly an efficacious dose and if you need to dose reduce, you should.
0 -
Susan, that is awful about the lung fluid. I hope you're able to tolerate the remaining drainage and they can resolve this issue for you. Hugs.
0 -
Three days ago I had discomfort in the liver area and then yesterday sharp pains for which MO prescribed Tramadol. Saw her today. My blood work is good and she palpated the liver saying it's not enlarged. She thinks my liver may be inflamed from the Verzenio kicking the tumors; I sure hope so! Waiting for tumor markers and if not down, we'll scan.
0 -
Thank you for mentioning the correlation of Verzenio with stomach pains. I had been blaming my ibuprofen since I try to use Tylenol and ibuprofen as opposed to opioids for pain control. I get an amazingly painful twinges when I try to eat and for that I've been taking 20 mg of omeprazole in the mornings. That doesn't always work. I will have to look into that some more.
In general Verzenio has worked well for me. I will say my biggest negative side effect is fatigue. I am exhausted most of the time although fatigue is also a listed side effect with exemestane and Gabapentin, which I am also on.
0 -
SusaninSF-
I am sorry you are dealing with fluid in your lung. It sounds uncomfortable and painful. I hope they are able to remove the rest of it and that it resolves. Do they know the cause of this fluid buildup
0 -
50sgirl, I am stopping in to suggest that your onc could have you try Budesonide for diarrhea, especially if you still have it on a reduced dose. When I started neratinib, which is notorious for diarrhea, it took me three tries and a dose reduction AND getting budesonide on board in order to continue. (Eventually I was able to wean off it.) This med is a steroid (anti-inflammatory) that is not supposed to be systemic but acts in the gut. So it has a different mechanism than the anti-diarrheal meds you have taken.
0 -
A question for any of you, how long did you take Verzenio before seeing TMs drop? I've been on it for 2.5 months now and mine continue to climb except for CEA.
0 -
Bliss58 - sorry but don’t have that info. I didn’t want TMs my first year on treatment as Iwas such a mess with anxiety on the scans alone. I only have 2 data points that first year, and they were 7 months apart. I monitor them now every month. I sometimes wish I never started looking at them!
0 -
Bliss, my TMs quadrupled the first month, then finally started to drop two months later (so, three months from start of treatment).
0 -
SeeQ, thanks for that info. My pain stopped after a couple days of Tramadol and now not taking it. Really helped me sleep though! I'm hoping this espisode is my gallbladder and something not cancer related for once! It's concerning though that my TMs have not begun to drop even a little after almost three mos.
0 -
Bliss, My MO was concerned, too. If they hadn't dropped when they did, I'd have had another scan and maybe a treatment change. He was pleasantly surprised (as was I) - and speculated that Verzenio may just be a little slower starting. I'm guessing he usually started patients on Ibrance - but my 'interim' MO started me on Verzenio before I could get to see this guy.
0 -
Just wanted to say farewell..I was only here for under 2 weeks but had to stop days ago due to severe acid stomach pain..NOT reflux in the esphogus...just in the stomach.
. Will be trying Afinitor i believe. Wishing you all well.0 -
Nicole I am so very sorry that you are having to once again change meds. Let’s hope that the next one turns things around for you. Wishing you lots of luck
0 -
Thanks Chico. I literally have been sobbing all day. Just not a good day.
0 -
Nicole, you are in my prayers.
0 -
Nicole - holdingyou closely in my heart and in my prayers. I pray for peace for you and release from your pain. I pray this next treatment is successful for you
0 -
Husband and Hope...thank you I am blessed by your well wishes and holding me in your prayers.
0 -
Nicole, so very sorry to hear you must already change, but more concerned about your stomach acid and pain. You very much need a break from all the pain. I'm wishing you the greatest of success with Affinitor. May this be the one! Know I'm always thinking of you and wishing you the best.
0 -
Thank you Bliss
0 -
Back in October of 2020 my wife was on palbo and letrozole, she had been on it for over 3 years. She switched to Abemaciclib and exemestane owing to continued climbing of tumor markers. Her first scan and blood test after the switch showed a slight rise, but not at the same rate as before. Her second test back in early February showed significant drops in her tumor markers. Today we got more good news. A further 45% drop in CEA and 35% drop in CA-15. Scans show many ambiguous things, but stable. So it would appear that following palbo with abemaciclib does work for some.
0 -
Husband 11 - That’s awesome news!!!’ When is her next scan???
0 -
Husband I mentioned in the Liver thread but SOOOO happy for you and your wife!!!! Just AWESOME!! Thank you LORD!
0 -
Thanks all. Next scan is in a couple of months. We've been discussing a dose reduction, as she is really suffering from bad fatigue. But, we are going to hold off on that for at least another cycle. She doesn't have much of a productive day, very short, and low on energy. Could be the abemaciclib, low hemoglobin, or ????
0 -
Husband I meant to say that on 10 days of verzenio I could bearly get out of bed...I have NEVER felt like that on ANY cancer med not even 2 different IV Chemos.....so I can't even imagine how your wife feels.
0 -
Verzenio is really not in much use in our area yet. As a result, our Onc really only has "book learning" knowledge of the side effects. She says dose reduction is predicated by diarrhea / and or low counts. She doesn't think the fatigue is strongly connected to the verzenio. That is where talking to all of you is such a great asset. I know from this board that fatigue is a significant risk, and that dose reduction may relieve that. However, we are holding off, as my wife is pursuing an iron infusion to help with her low iron levels. If that fails to produce results, then we will pursue a dose reduction. No point combining two different strategies at this point in time. She is also trying a supplement that may improve her energy levels and that has some prospect of fighting cancer.
0 -
Husband I was only on 100mg...what is your wife on?
0 -
Nicole, she is still on the 150 mg dosage.
0
