Abemaciclib Verzenio for Stage IV
Comments
-
thx. Will start with food. Thinking 8 am and 8 pm. Everyone seems to say 12 hours apart
Will let you know. Good luck!,
0 -
ChathamLady, It is scary in the beginning, but it will get better with time. Be prepared for the diarrhea towards the end of the first week. When/if it strikes, you may be able to manage it with Immodium and Metamucil (watch the timing on the M). The fatigue is worse in the beginning, but - for me - it got better over time. It's still here, but not as bad.
As others have said, a dose reduction may be appropriate. I held off, but I'm usually at home, and I use Immodium, preventively, when I want to be sure there will be no urgent surprises (out all day or traveling - up to a few days at a time). I'm considering talking to my MO about a dose reduction now that we may be out and about more regularly. And, of course, it helps my confidence that I reached NEAD on my last scans.
0 -
I am finishing up week 4 and have received pills for the next 4 weeks. Diarrhea has been my constant companion since day4 of week one. I tried Imodium and Miralax, but it didn’t help. I saw my MO last week, and he sent in a prescription for Lomotil. It hasn’t helped either. I am supposed to let my MO know, and he will prescribe something else (main SE would be constipation which would take me from one extreme to the other). I will call him tomorrow. If the new medication doesn’t work, he will reduce the dose of Verzenio. He told me that a higher dose is recommended when Verzenio is given as mono therapy - lucky me.I don’t feel sick, but the diarrhea is a major inconvenience and irritation. Luckily, I don’t go out much these days, I just hope that Verzenio is working.
Hugs and prayers from, Lynne
0 -
Hi Lynne,
I feel for you. My MO started me on the top dose even though I was on Faslodex. I was fortunate not to have huge issues with diarrhea but the nausea for me was horrendous.
Really hope you can get the D under control and that Verzenio is doing its stuff!
Hugs. Pat
0 -
50s girl - I was Max’d on both Imodium and lomotil at same time when I was on the 150 2xper day and it didn’t help at all. But this was several months out. I definitely had to dose reduce to 100 mg 2x/day and I was able to stop both the lomotil and Imodium. Now I take Imodium as needed. I was on Metamucil and really didn’t need Imodium at all! But then the Metamucil started causing me some heartburn and indigestion after a few months. Now back to Imodium but I take maybe 1 pill every other day and diarrhea is well managed.
0 -
Thank you for your replies, Pat and HopeAndGratitude. I am currently taking 200mg of Verzenio twice a day. I think a dose reduction would help. When I had blood tests at at my MO’s office last week, my Potassium was down, and my Creatinine was up. I had an infusion of Potassium and am now taking Potassium pills daily. I try to drink a lot to avoid dehydration, but sometimes the thought of drinking one more sip ofwater is more than I can take. It is encouraging to hear that you eventually saw improvement in SEs.
0 -
Lynne, just an FYI that the rise in creatinine is normal apparently. They found that it rises and then should level off. In my case, creatinine kept rising even after dose reductions from 200 mg bid, to 150 mg bid and then 200 mg once a day. (I think... there were a lot of course corrections for me!) It took one further drop in dosage to get the creatinine to stop rising. I don't know how much of an issue it is really but I was worried that it could impact future treatments since kidney function is always a big concern and, at that point, I had been on limited chemo treatments. I didn't have the potassium issue.
Oh, totally hear you about the water intake. I have never been a big water drinker so find it tough. Initially when I was on the high dose of Verzenio the nausea made it tough to even consume fluids. Not a good combo with watery diarrhea!
Hope you get all this sorted soon. Sending a virtual hug! Pat
0 -
50,s girl,,,, Hope your SE get better. I know those potassium pills are not fun. Mine wee huge horse pills
My MO gave me te go ahead to start back up on Verzenio. Even though my ANC is .9. So I’m starting today but I will be in the 100mg dose. I just hope I done have to taje anymore breaks. I’m praying this works. Hugs ladies0 -
Fingers crossed Hopful2!!
0 -
Could someone please clarify or explain. Sorry to be dense. So Metamucil instead of Imodium? asking because I like that option a whole lot more than taking more pills. How often? Thx
0 -
ChathamLady ‐ this is an "it depends" answer. Some people need both, some people don't need any. I think the original recommendation was for one teaspoon Metamucil, two times a day. Personally, I take one Metamucil capsule, one time a day, some days. I'd probably do better if I was more consistent about it. You need to take it two hours before or after your other meds (per label instructions). BTW, some folks use FiberCon instead (same idea). You'll need to see what your body needs or will tolerate.
0 -
Thank you. Will try it and see what does or doesn’t happen
0 -
Just started my 2nd week on Verzenio. Other than one episode of D which was taken care of by 2 immodium, I'm feeling really good. Is that weird? I don't have labs till next week, so I'm keeping my fingers crossed.
0 -
cross posting from liver mets thread -
Good morning everyone. Just heard from my MO. CT and bone scan results back. Everything stable and the same EXCEPT a larger mass now appears in right lobe of liver, so need to get an MRI, confirm it's another tumor and not "something else" (???), then hopefully can deal with it "locally". It's 2.7 cm so quite a bit larger than the 8 tumors being "controlled", which are all about 1 cm or so. So after MRI, we take next steps. Hopefully we can deal with this one in isolation amd I can stay on same therapy for now - since everything else is controlled. 🙏🙏🙏. Scary times but I know could be much worse. Thanks to everyone who was in my pocket this scan
0 -
HopeandGratitude, praying for good results. I swear, waiting is the hardest part.
0 -
thanks Grammykate It starts to feel like we are always waiting!
0 -
Hope and Gratitude, Do you know when you will get the MRI? I am praying for you. Sadiesservant,
Well, Lomotil didn’t work, and my MO called in a prescription for Colestipol. I don’t like the SEs that I read about, but I hope it works. If not, my MO will FINALLY lower the dose of Verzenio. At this point I just want to feel normal again, but I also need Verzenio to work. I am running out of options.
Thank you all for you help and support.
Hugs and prayers from, Lynne
0 -
Darn Lynne,
So sorry to hear the Lomotil didn't work. It's such a difficult position to be in with the side effects of Verzenio. I do think a dose reduction will do the trick but certainly understand the reluctance of both your MO and you to reduce. Hang in there! And thanks for the prayers. I'm feeling quietly hopeful that Xeloda is beating back the liver mets as pain has decreased. Scan in three weeks and then I should know for sure. Fingers crossed!
H&G, let us know when you have the scan. We'll be praying for you!
Hugs! Pat
0 -
Hi Lynne - lomotil in combination with Imodium, both at highest dose did absolutely nothing for diarrhea for me. Had to drop dose and then felt human again!
Sadiesservant - I am praying Xeloda works for you....and for a long time!!!!
My MRI was scheduled for 3/19 but someone cancelled so they got me in on Friday, 3/12. Getting all info together for a consult with IR so we can makeappt quickly after MRI results. Hopeful but scared a bit.
0 -
I recently changed to a new MO, closer to home. She ordered a ki67 test on my tumor and it came back high, so she recommended Verzenio. Anyone else on here stage 2A. I’m terrified of the potential SE’s short and long term. I don’t know what to do
0 -
Hi Amy,
This is a thread for those of us with stage IV diagnosis so, unfortunately, you won’t find any peeps here. The information is good in terms of side effects though. Generally I found the drug tolerable but don’t be afraid to ask for dose reductions if it gets tough.
Good luck!
0 -
hope&grat,,, praying for good scans Friday. Keep us updated.
0 -
Grammykate, I too have felt surprisingly well on Verzenio with only a few bouts of diarrhea, so glad for you.
Sadiesservant, sounds encouraging that Xeloda is working for you. Fingers crossed!
Lynne, hope the terrible diarrhea gets sorted out for you or you get the reduction. Hugs.
Hope&Gratitude, in your pocket for scan tomorrow.
0 -
HopeAndGratitude, I hope everything goes well for your MRI tomorrow. I will say a prayer for you.Do you know how soon you will receive results?
I started new med for bigD today. So far it hasn’t help, but it is too soon to see a change.
Hugs and prayers from,Lynne
0 -
just a thought and I may be off base but I’ve heard from others that an anti spasmatic might be helpful. Calms things down. You’ll need a critter tho. Hope it helps. I start tomorrow
0 -
thanks everyone for being in my pocket tomorrow! It’ll be a late night for you as my MRI is not until 7 PM. I doubt I will have results until Tuesday but sometimes they move quickly over the weekend. I know my MO has got everything moving in parallel to get over to the interventional radiologist for review and setting up a consult. Everything takes time, but I know everyone here is moving as quickly as they can for me and I appreciate that so much.
I don’t think I Cross-posted this from the liver Mets thread, but blood work from yesterday showed that my ANC had dropped to 1000, when it’s usually between 1200 and 1400. In addition my creatinine had risen to 1.45, when it’s usually 1.2 (high but stable).As a precaution, my MO wants me to take two weeks off of VERZENIO so that my body can have a chance to rest and recover and hopefully resume at the same 100 mg dose. I hate taking a break, but she’s probably right and I know she wants me to stay on VERZENIO as long as possible. Of course I start to worry immediately of all the what if‘s. Like what if they don’t return to normal, or what if after I restart amd my next blood work shows my ANC still low and creatinine still high. I wonder sometimes if my head will ever stop spinning. But I realize worry is not going to do anything for me, so put it to rest and just live today. Tomorrow will come soon enough. Appreciate y’all being there. Love and prayers for God to watch over all of you.
0 -
HopeandGratitude,
Good luck tomorrow.
On the creatinine point (and also eGFR, also related to kidney function) I had a discussion the other day with my primary care physician. She quizzed me on how much water I am drinking per day because those numbers have been jumping around a lot for me. Two takeaway points: she said that not drinking enough water (she said at least 64 oz but recommended 80 oz!) could definitely affect those numbers. Also, my most recent creatinine number was at 1.06. She said that most labs set normal up to 1.2. So you really need to read that number in conjunction with your lab values for creatinine. She wasn't worried about mine at 1.06, but said we probably should just be sensitive to drugs that could affect the kidneys. I have never had weird kidney numbers before, ever, in my life (to my knowledge) but I suspect that these CDK4/6 inhibitors may in fact affect the numbers somewhat.
0 -
BevJen - thanks!!! they absolutely do - at least verzenio- and it’s in verzenio label. Mine was < 1.0 when I started and increased up to 1.2, sometimes 1.3 but held pretty steady. My MO was worried with the rise in parallel to the drop in ANC in my most recent blood work.But why after almost 1.5 years do they start to change? To remind me likely I am mortal. But to your point, I am going to start drinking more water than I have been for sure. Keep flushing my kidneys. There is no built in breaks for verzenio, which would be nice for our bodies, but it also makes it really scary when your MO tells you your body needs one.
0 -
HopeandGratitude --
Well, I'm off of a CDK4/6 drug now (I was on Ibrance) but I was on it for about 18 months. That's when my kidney-related numbers started going wonky -- like never before. They are not perfect now, either -- I'm on keytruda as a single agent. So what the heck -- as I learned in high school chemistry, every action has a reaction, and every one of these drugs does something to our bodies. Big sigh.
Best to you.
0 -
Bev-Jen - wow!! I hear you loud and clear. Thanks. Sorry there are still issues for you. These drugs definitely were not made to benefit our bodies were they? And the man cancer outsmarts them all. We “tolerate” them with apparent long lasting, not-so-positive effects!
0
