Abemaciclib Verzenio for Stage IV
Comments
-
Hi to all with questions about Verzenio.
I realize that we (and our bodies) are all different. What has worked for me might not work for you. Hopefully, my experiences with Verzentio will answer some of your questions and offer you hope and encouragement.
For those who don't know, I was diagnosed with MBC (de novo) in February 2021. I am ER+ and HER2-. I started Letrozole right away. Although the first thought was to put me on IBRANCE, I was instead prescribed VERZENIO 150mg twice a day because of two (2) lesions in the front of my skull. My mets were primarily to some bones, 1 lymph node, the 2 skull mets. and initially to the fluid in the pleura of my lung (drained in 2/2021 and very little fluid remained).
I never experienced the "big D". I attribute this to drinking lots of fluids (I am a water drinker), drinking a high concentrated probiotic (BioK Plus) twice a day and eating very heathy (am fortunate that fruits and vegetables don't upset my stomach).
After being on the 150mg dosage twice a day, in October/November of 2021, I began feeling exhausted which my medical oncologist said was from the Verzenio. Despite the offer to decrease my dosage to 100mg twice a day, I decided to try to stay on the higher dosage for 1 year before switching. After one year, almost to the day, I made the switch to the 100mg dosage. My exhaustion has pretty much gone away. I am only fatigued when I stay up too late.
And, both my CEA (1.1) and CA 15-3 (12.9) makers have remained well within standard range.I never went on Zometa. My oncologist wanted me to, but since I have dental issues from time to time and have needed a number of procedures done, she finally agreed to giving me a pass on that. Only time will tell if that was a good decision.
As for my blood work... the Verzenio has caused my WBC and Hemoglobin to be lower than normal, but my medical oncologist (who is also a hematologist) tells me I do not need to worry and that I am not immunocompromised. My Creatinine is higher than normal, but again, she says that this is expected from taking Verzenio and I should know that it is not affecting my kidneys (as my GP says it is) and my BUN is normal sometimes and a little high at other times (again nothing to be too concerned about according to her). She has pointed out that the time of day and the amount of water I have drunk prior to my blood being drawn, both affect the blood results.
NOW FOR THE BEST PART: Verzenio and Letrozole continue to work well for me.
My PET/CT scans in May and November of last year showed that most of the mets had resolved themselves, there is no longer any fluid in my pleura, and there was no evidence of active disease (NEAD).
My brain MRI, last October showed that one of the lesions in my skull had disappeared and the other one had gotten smaller. My radiation oncologist has changed the frequency of my brain MRI and visit to once every four (4) months and I will see him the middle of next month.
My medical oncologist, at my visit last week, which was 2 days short of 12 weeks (but who's counting) since the last time I saw her, said that I am "in remission".
We will be celebrating my 2nd Cancerversary (the date of my diagnosis) in a little more than one week. I truly believe that with my positive attitude and the knowledge that new drugs/treatments will be there, if and when this first line of treatment no longer works for me, there will be many more Cancerversaries to come!
Sending prayers to everyone. Please feel free to direct message me if you want.
0 -
MKestrel - I didn't change pharmacies or insurance but I had a horrible time with my Verzenio savings card. When I renewed it the system acted like it wasn't covered by Regence BCBS even though it had been for all of last year and I called Regence who told me it was still covered. The pharmacy kept getting a copayment due of almost $1400. My issue had to do with a new verification system my employer went to and there is now a third party that releases the money from the Verzenio savings card to my pharmacy and there was a special code they needed. I spent several days making calls and trying to get it all worked out. Every January I seem to have trouble with one issue or another.
0 -
Anyone have lung problems on Abemaciclib? My wife has had a bronchitis like cough for the last 5 months. Nothing shows in the scans of her lungs. It goes away as soon as she take a mucus thinner, NAC. I'm beginning to wonder if its a side effect of the abemaciclib.
0 -
@husband11: I find I often have a cold... for the entirety of a treatment. For me, I suspect that I just can't seem to fight off certain low level infections due to compromised immune levels.
On Xeloda, I basically always had a head cold. It wasn't that the Xeloda was causing me to have a headcold, but rather that the Xeloda was preventing me from properly fighting off a headcold, so I perpetually had the symptoms of having a headcold. I had this on Eribulin and now on Trodelvy too. I figure these drugs reduce my ability to fight off some infections, so I am always running low level response to those infections.
I wonder if this is what your wife is experiencing. It is not that the Abemaciclib is causing her bronchitis and a cough. It is that The Abemaciclib is preventing her from effectively fighting off sickness, so she always is running a low level response to sickness.
Maybe treat the symptoms?0 -
Has your wife spoken with her MO about it?
0 -
husband11,
I've had bronchitis twice since I've been on Verzenio and had to have antibiotics. I don't know 100% that it's related, but I do know that I don't normally get bronchitis once a year, let alone twice in one year whether from Verzenio or something else. My labs have been in the normal range for the last few months.
Might be worth mentioning to her med onc. That's who prescribed my antibiotics for me.
0 -
Husband, No lung problems but I do have a continual slight runny nose and I can tell there is fluid in my ear canal that I have had for two months. I never associated it with Verzenio before, but you have made me curious. It did all start with a cold so perhaps I never fully recovered.
0 -
Thanks all. My wife did a treatment of antibiotics, as the Doctor suspected pneumonia, but it did nothing for her. Nothing shows up on an xray, ct scan or mri. Just some sort of inflammation that gives her a slightly wet cough, that resolves itself when she take N-Acetyl cystein. We have an appointment with the Onc next week. Hopefully she can switch treatments, as her tumor markers have risen steadily on abemaciclib, and now she has ascites again.
0 -
Husband11- is she Her2 low by any chance? thinking enhertu-
would a return to Xeloda be possible?
0 -
I'm not certain of her her 2 status showing any her2 level at all. It's been a while since we thought about that, but I seem to recall she had no her2 activity.
She used xeloda for a year, prior to switching to palbociclib, simply because it became available. The xeloda worked great right up until the switch, so we hope it will work again. She made the switch from palbo to abemaciclib after a number of years, and during that time her tumor markers starting going up, so she switched to abemaciclib. The abemaciclib has always been problematic for her and has significantly diminished her quality of life. Mostly the GI tract issues. It worked in the beginning, but there are signs it is starting to fail (rising tumor markers, returns of ascites). I think its wise she quits, even though the scans show no progression. But I don't fully trust the scan. Her cancer was never initially caught by scans, because it was so diffuse. Only a biopsy confirmed it, and that it was wisespread.
0 -
Husband11- I sometimes wonder if the scans are delayed in respect to the TMs and other indications that the drug is no longer working. After 2.5 years of Xeloda my TMs started rising a lot and I started to get anemia, bone pain and other weird "injuries", but, the PET showed little- I really had a sense it was no longer working and knew it was time to change- and changed to Enhertu.
I hoped she can get back on the Xeloda- it worked so well for me and I felt good on it. They think that Enhertu will work on Her 2 zero- but, not approved for that in the US-
0 -
Husband, I am sorry to hear your wife is struggling on Abema. I have gut issues now too, and fear travelling now because of them. But so far it is working well (I am NED) so I will hang on. I have scans next week even though my markers have stayed low. I am losing my hair also which I did on Ibrance. So sad as it had come back nice and full once I left it after four years. Anyone else losing your hair? It is getting thin...
nkb, Xeloda was rough on me even though I stayed on it a year. We are all different! My new onc does not trust PET scans so I now have both bone and CT scans instead of PET that I had for six years.
0 -
Intothelight- my hair thinned a lot on ibrance, was full and luscious on Afinitor and thinned a bit esp in front on Xeloda. On enhertu it thinned significantly after the first few cycles (despite cold capping) but, started to grow back on cycle 4- places that had thinned on Xeloda (front) came back first. Having hair is so nice on many levels.
I had a CT in the hospital recently to look for other things and it showed the size of some of my bone mets, not the activity- nothing on the CT that doesn't show on the PET- bone scans never showed anything for me- I suspect that finding a modality that works is the best plan and then adding other types of scans when things don't make sense on labs or symptoms.
Good luck on new scans.
0 -
Intolight
Sorry to hear about your gut issues. I found that taking a high concentration of probiotics (BioK Plus) and drinking a LOT of water every day, kept me from getting gut issues from the Verzenzio.
My hair is thinning too. I tried Visviscal Pro. It was working but after 3 months I got a pain in the back of my head. Probably not related, but I decided to go off of it nonetheless. It is not as thin since changing from 150mg to 100mg, but still not as thick as it before taking any meds. A couple of women in the Zoom meet-up recommended taking Biotin (has worked for them). You might want to look into that.
Good luck!
0 -
going2beatthis, I’ve also been talking probiotics regularly and have some intestinal cramping but still haven’t experienced the diarrhea. I’m on my second week of Verzenio. Fingers crossed
0 -
My wife's latest status is that she is going to drop the Verzenio (abema) and keep on the exemestane for another month, and see if the Verzenio is what is causing her the stomach problems. No switch to xeloda yet. She will also have a scan in a little over a month.
0 -
IntoLight - I have been having stomach issues for the last few months. Not sure it's Verzenio related as I have been on it for 3 years but I can also say my GI system has never been the same since starting it. Like you, I am completely stable so I don't want to rock the boat if I can manage these symptoms. My hair has thinned considerably. I have a very distinct female pattern baldness that started not long after I started Faslodex and Verzenio. Not sure which one of those is causing the most loss. I've tried Viviscal Pro and it does help my hair grow faster but it hasn't helped the thickness.
In terms of PET scans it sounds like my MO thinks along the lines of yours. I get a CT and a bone scan quarterly and monthly lab tests. I think he will only order a PET scan if there is a progression seen. It's been interesting to hear the approaches of different MO's. I'm going to ask mine when I see him next month if I can drop from the 150 to the 100 mg dose on Verzenio to see if it helps the fatigue and nausea. I've been stable for 3 years so I don't see that as much of a risk but he may, we'll see.
0 -
Emac877,
I started out on 150mg of Verzenio and after being on it for 7-8 months, I started experiencing extreme exhaustion and thinning hair. Despite the fact that my oncologist suggested a dose reduction to 100mg and the fact that both my makers were in standard range, I decided to stay on the higher dosage until I hit 1 year. At that time, I did reduce the Verzenio to 100mg. I will tell you that my fatigue did go away and my hair although not as thin as when I was on 150mg, is still thinner than before I started Verzenio. As for my makers (not done monthly)and PET/CT scans (every 6 months), my makers stayed well within standard range and my scans have shown no active disease since May 2022.
BTW, if you aren't aware, at one of the conferences in 2022, a study was presented that showed that one of the CDK4/6 inhibitors was found to have the same prognosis at 100mg as at 150mg. My oncologist felt that this could be true of Verzenio also. So far, that has proven true for me! 🙂
0 -
Thanks everyone for your responses. I will muddle along. My onc office did call me when they saw a thickening of my colon wall on my latest CT scan. They asked if I was in stomach pain. At the time I said "no" but I have had pain the last couple of days (one week later). I am wondering whether it is from the Faslodex shots I had Friday so I will give it a couple of days. It seems it is always something and sometimes I wait it out to see if it goes away. Most of the time it does. I do have more urinary frequency the last couple of weeks so I am adjusting diet. Any recommendations?
0 -
Latest on my wife is that the oncologist has changed her mind, and will not permit my wife to switch to another treatment until we have the results of her next scan. At the suggestion of the oncologist, she has stopped taking the abemaciclib, and is just taking an aromatase inhibitor. It's too bad that she has to wait so long to get approval for another treatment (hopefully xeloda, as that was working for her before she switched to palbo). She continues to show signs that something isn't going well, such as the return of ascites, and extreme fatigue. But the oncologist just thinks its here liver, self destructing on its own, unrelated to cancer. To say the least, we are not impressed.
0 -
Husband, I am sorry to read that your wife is still struggling. I know it is a hassle, but is a second opinion warranted? I have not done this, but others have and perhaps they will chime in. I will keep her in my prayers.
0 -
We'd love a second opinion, but in Canada, that would mean switching Oncologists if you want the opinion from someone with the power to prescribe and monitor. We've had so many problems this year with young, new doctors. They seem so worried about liability, that they are paralyzed. It's not great being outright lied to either. She told my wife she should take time off abemaciclib before changing treatment, and that if we gave her the word, she would prescribe xeloda. Now, she denies it. I was there at the meeting, and there was no misunderstanding, as she restated it in multiple ways. It seems the Oncologist now believes the exact opposite of what they believed when cdk4/6 inhibitors first came out. When they first came out, they were only to be used if there was no visceral crisis, and that chemo should be used firstline. Now they believe the exact opposite, and stick to it dogmatically. The cynic in me thinks the drug companies control the (re)education process, and there is no money in old school generic chemo, so they do whatever they can to sweep it under the rug.
0 -
Husband - I haven't been involved with Verzenio or Xeloda yet (although I think it's coming, as I recently became stage 4) and can't speak to the drugs and their effects directly, but I do want to say that I am in the US and I agree with you that so much of what doctors do and say these days has to do with their liability. It's a shame that society has become so litigious, but that's the way it is, I guess. It really puts the brakes though, on these doctors being much more open, honest, and willing to try some varied things. And yes, the younger ones seem even more rigid.
I agree about the pharmaceutical companies too. All the doctors seem to know these days are drugs, drugs, drugs, and they always push the latest ones that they are heavily marketed about. I think all of us with cancer or any chronic condition, especially, just have to wade and sift through all this stuff, do some of our own research, and make the best we an of it. It is certainly not optimal.
0 -
Husband11-this is frustrating and scary. not encouraging second opinions seems irresponsible. can we at least assume she has discussed your wife's care with her colleagues? are there tumor boards in Canada? Liver specialist?
The patient has to have some say in the treatment- no one has a crystal ball as to outcome.
0 -
husband11,
Are you able to read the oncologist's notes from the meeting in question? If she wrote what you remember refer her to her notes....quote her notes. I try to read the provider notes after a visit and have found errors. In one situation the oncologist wrote something that was inaccurate and I called her attention to it. She did not like being called on it and retorted "I knew what I meant" and said she was not going to amend the note (i.e. too busy). Unfortunately some doctors don't like being held accountable.
0 -
We usually have the meetings by telephone, and I record the whole meeting. I don't feel it will do us any good to confront her on it. I know I can make a convincing argument because of some of the details she provided about the timeline for getting back to her about the decision to change treatments being based on her going on vacation, and not being comfortable with having a colleague write the prescription. There was too much said to not make our version correct. All that would do is antogonize her. She should have just been honest and told us she changed her mind. Not telling my wife that we misunderstood.
My wife has her scans on Monday, and if everything works out, we will have a telephone call with her on Tuesday to discuss the matter. Hopefully that settles it, and she complies with my wife's request to change treatment. For some reason she is very reluctant to have her go off the cdk4/6 inhibitor. It's like she wants proof by scan that it is no longer working. We don't want that, because what proof is she waiting for, mets in a new location? Also, if we quit cdk4/6 because of the side effects, that is quite different from quiting because it failed. It might not close as many doors.
0 -
Husband- I wonder if a change to Ribocyclib would be an option is she really believes that a CDK4/6 I is the best option? I have been listening to many podcasts lately and. they seem to be preferring Ribo when switching due to the worse side effect profile of Abema. I thought there had been some evidence of Abema being more potent- but, there researchers said that has not been proven.
0 -
nkb - ribo would be an option if its available to us. The drug company was providing it on a compassionate patient basis free at one time. We would have a problem though if our health care system has to pay for it. In our province, the health care system limits coverage to a single targeted therapy for the lifetime of the patient. They consider drugs like the cd4/6 inhibitors, and mtor inhibitors, everolimus, targeted therapy. So as a cost savings, you get one, and one only during your lifetime.
0 -
Husband- I wonder if Novartis is interested in providing Ribo for free to get a foothold in Canada and let MOs get familiar with it?
The price of all these drugs is crazy- Afinitor is now generic- don't know the cost of the generic. it was $19,000 per month when I took the brand name 4 years ago!
I just read that the average cost of a new drug (not cancer necessarily ) in US this year is >$7000. per month! Economically toxic.
0 -
nkb, my son is a lawyer and a few years ago his firm represented a big pharma company. His explanation of the high cost was that they spend billions on research and trials, etc., on a specific medicine, then they only have five years (four years?) once it is approved before it is allowed to become generic and other companies can market and sell it. So they have five years to recoup their cost before competition sets in. Still too high, but it is an explanation. Of course they want a high profit to begin with as long as they can get it. This is just how it works in the US. I am so sorry it is a struggle to get these drugs outside the US. I have been on five different oral cancer meds which have lept me going for almost seven years now. Once this last one, Verzenio, quits I will probably have to go on IV drugs which so far I have not had to do. All of my costs have been very low or free to me thanks to foundations which my oncology office applied for on my behalf except Ibrance which I had to do myself to get co-pay reimbursement through them directly. You really have to know how to work the system which is sad for people who don't know how to do this or are in small towns where their oncology office is limited. This is sad, but I still feel is better than the limits in Canada.
0
