Abemaciclib Verzenio for Stage IV
Comments
-
Ailurophile, stable is always good! I think the results are good in that respect. Nothing negative on the CT. If you are worried about the cancer engines starting to rev up, even thought they haven't started driving yet, could you get a PET scan? I find they give me more directional guidance as my cancer will start lighting up on the PET before it grows and will go completely dark on the PET (meaning no metabolic activity) before it shrinks. Elevating liver enzymes or liver function tests can be a forewarning of some cancer activity. However, they should always be repeated as they can sometimes rise for short periods of times for other reasons. My AST and ALT rise when I am sick and then go back down. I hope LDH just rose for some odd reason and will be back down soon.
0 -
Thank you JFL. I feel the same way and PET sounds like a great suggestion. I am sure she won't order it immediately since I had my CT last week.I will try to push a PET for next month.
0 -
Hello,
I'd like to "throw my hat into the ring" on the discussion of Verzenio.
I started Verzenio & Letrozole April, 2018. From my scans (CT and Bone) in April 2019, it is still going strong. I had several mets to my lungs, bone, liver, and omentum. I had just finished 2 years of various chemotherapies, and really needed some sanity back in my life. Oh... I should also mention that this is my 13th line of treatment. As of my recent scans, all of the mets to lungs & liver have disappeared. The omentum still has 1 met of just 1/2 cm. The bones are stable for the last 9 months, but still have areas that light up.
Now that I've demonstrated success on the Verzenio+Letrozole combo, my oncologist is now telling me that he thinks this treatment might work for many years for me. I keep looking for the evidence to back this statement, but can't find it.
In the meantime, I wanted to share my story with you if you're considering this treatment.
For me, the diarrhea is manageable. But, I have to admit to being up at 2am too often with another bout of diarrhea.
In November, 2018, we discovered the brain mets. They were really small, but still causing me dizziness. Since then, they have done scans every 2 months, and used cyber-knife to treat the mets. Hopefully, the next scan in July will show stable mets.
As for any other side effects... I do have some chronic swelling in my legs... well... most of my body. It makes my legs ache when I've been sitting for awhile & get up. MO thinks it's due to the Taxol.
I also have a Type II diabetes diagnosis that I was controlling with Metformin. For the record... Metformin + Verzenio = way too much diarrhea. So, I have switched to a long-term, injectable insulin.
Wish everyone luck with your treatments!
0 -
there’s a woman in the FB cdk-4/6 inhibitor group who got five years out of your combo.
0 -
Luce what does FB stand for? Is it a different type of inhibitor?
0 -
oops! Did you mean a Facebook group?
0 -
yes, Facebook. There’s a cdk4/6 inhibitor group on Facebook. At least one woman in it lasted five years on Verzenio and faslodex combo.
0 -
I will check that group. Thx for sharing
0 -
it’s not a great group; a lot of hand wringing and prayer requests. I only mentioned the woman in reply to pacifica’s post asking for any evidence to back up her oncologist’s opinion that the combo may work for her long-term
0 -
I feel like I am drowning and trying to not going down with seeing and reading success stories....
0 -
Hang in there Ailurophile! You're still somewhat new to this game, maybe feeling a little down due to the recent oophorectomy - did that procedure throw you into premature menopause? Sending you a PM..
0 -
Hello,
Can I have some advice please. I've just started Verzinio 150mg capsule twice a day ( together with Faslodex which I've been on for 9 months).
I'm finding the side effects of Verzinio very very hard. The diahorrea, cramping, plus fatigue. Slept for 12 hours yesterday!
Has anybody had continued success but on a lowerdose? I've read that it can be reduced to 100 mg twice a day or even 50mg twice a day but is it still going to work?
I suffer with IBS anyway so pretty much knew I would have tummy issues. I so want to be able to tolerate this new drug as it’s only recently become available to us in the UK
Any advice on dose reduction would be much appreciated.
Thank you
0 -
Yes,, many have to reduce dose to rein in side effects, and it works fine. you may want to give it six weeks on full dose, though; the diarrhea may settle. if you read through this forum from the beginning there are dozens of posts on how to deal with this. Good luck.
0 -
Today I am pickled in an itchy rash all over upper torso, neck and arms. Has anybody else had this on Verzinio?
0 -
Hi all
I am
Writing on behalf of my mother that has bone mets the last 6 y and liver met the last 3 months. Got off from ibrance due to low RBC. I read a lot of previous responses none has experienced any low RBC with verzenios ?
Thanks so much in ad
0 -
mermaid007
I have sever rash but my doctor think its unrelated. I scratch until it bleeds
0 -
After almost 17 months on a clinical trial of verzinio and immunotherapy (LY3300054), my time in the trial is coming to an end this week. My tumor markers have been steadily increasing, currently at 45 and my liver tumors are getting larger, largest is 1.5 cm. It was really hard to hear this news. I don’t know what my next treatment will be yet, but my onc has assured me that there are several options available that I can still try. I’ll find out on Thursday. I’m thinking my next treatment might be either Ibrance or Xeloda. Does anyone have any thoughts on what might come after verzinio? Thanks
0 -
Working mom, I am sorry about your news. I do not really know what comes next. I have heard that some do go toa different CDK 4/6 inhibitor such as Ibrance. Have you ever been Faslodex? Are you a candidate for that procedure Y20? Wishing you all the best and I’m sure you and your team will come with a new plan.
0 -
Chemokaze, thank yuo for your reply. I'm hoping it will be ibrance. I have never been on faslodex either. I'm not sure what Y20 is? Thankful I will finally have a way forward tomorrow.
Christine
0 -
Hi there. How did it go today? Do you have a clearer path now? Hope you are okay.
0 -
Mermaid007, I have been on Verzenio and Faslodex for 33 cycles. My Verzenio was reduced to 100 mg twice a day early on.. I find it very tolerable and had a complete response to liver tumors while on it. Occaisionally the side effects of diarrhea are a problem but find them easily controlled wiht Imodium. Yes, there is fatigue, but it seems everyone who is being treated for cancer, experiences it. My initial and constant mets are in the bones. Wish you well. Try the reduced dose before you give up on it.
0 -
I saw both my clinical trial onc today and my primary onc. She will be switching me to eithe affintor or piqay depending on blood work results. I will also start faslodex shots monthly. Very relieved that side effects from these should not be too bad. It was hard to leave the care team I had for 17 months but I’m in good hands
0 -
Great,pleased you are sorted out xxx
0 -
Thank you for the reply.
The rash covered my body and my neutrophils were low on 150mg twice a day. My oncologist has put me on the lowest dose of 50mg twice a day and so far no sign of rash ( it’s only day 5 though). If I can tolerate this dose he will try and up it to 100mg twice a day. I also have Faslodex and xgeva. I’m very encouraged by your results and hope and pray I can tolerate this drug even at the lowest dose.... will have to wait and see.
Take care
0 -
Well my scans are mixed - no new tumors but slight growth in current tumors after 3 months on Verzenio and faslodex. . One showed possible necrosis but still larger than before. No surgery for now. Going back to onc to discuss Med choices. She is doing the mutation study to see if I can try pikay but she said she was thinking about xeloda. 😕. Not looking forward to those side effects. I don’t have enough tumor tissue left from the biopsy to do a molecular study. may ask to have that done so I can find more options
Seeing an NET doc to learn if he has any insight. Anyone on Everolimus and what is It like? It has some benefit for the Neuroendocrine tumors so I am interested in that.
Glad they want to try the next line before surgery, but wonder what it should be.
0 -
alabamaDee-
I am on Everolimus with aromasin for about 5 months now. The first month I was really tired and had mild weird rashes. I did not get any mouth sores , but, used the mouth wash for 2 months as planned. Now I find it easier than Ibrance in many ways. No hair loss, no leg cramps, less thirst, neuropathy is better, no shots in the butt- less anemia. my MO told me there are some people who don’t tolerate it well and many who do. My cholesterol went up a tiny bit and blood sugar is up a little from 86-100.
Good luck with your choice.
0 -
Had breast cancer, mastectomy 1991, chemo, radiotherapy and then developed multiple bone secondaries between 1998-2018. Been stable and well for many years on Exemestane and Denusomab. Last 6 months tumour markers rising having been stable for years. Latest CT scan now shows pleura and peritoneal spread and about to start on Abemaciclib/Fulvestrant. Any advice as understand side effects are likely!?
0 -
Hi Rosiet, and welcome to Breastcancer.org!
We're so sorry you've been dealing with these diagnoses for so long, but we're so glad you've decided to join us here for advice and support -- we're all here for you!
We're sure you'll get some first-hand experiences here soon from others. In the meantime, you may find it helpful to check out the main Breastcancer.org site's page on Verzenio Side Effects to get an idea about what you can expect with this medication.
We hope this helps and we look forward to hearing more from you soon!
--The Mods
0 -
Congrats on a 20yr run! Diarrhea is to be expected with abemaciclib. I take FiberCon to control it since loperamide was uncomfortable, to say the least. I also had a dose reduction to 100mg twice a day.
My pre-dawn night sweats from the fulvestrant injections are subdued by gabapentin at bedtime. Will you now switch to a bisphosphonate such as IV Zometa or are the bones no longer much of a concern?
0 -
thanks Nkb
The ct scan was mixed results. No new tumors but the ones I have grew slightly. The largest showed necrosis but is almost 5 cm. So no surgery for now and changing me to Xeloda(MO - “something this cancer has never seen) to get a better response to “get me to the operating room” . I start tomorrow. Leaving this thread to head over to Xeloda.
I may be back since it showed some response by slowing the rapid progression that was occurring before meds and necrosis. I had very few SE so faslodex and verzenio can be put back in my bucket.
Best wishes to this group.
Dee
0
