I was really feeling that Verzenio wasn't working for me. I have been on it just over two cycles and my tumor markers were trending up, up, up. Had a scan Friday, results posted yesterday. I had two cancerous spots: a thickening of the pleura wall, which, over three scans, went from "suspicious," to "highly suspicious," to "progression" in previous scan, which was in April. It is now "resolved." In April, I also had a small new tumor on my paratrachea. SUV has decreased slightly from 4 to 3.5.
I am not finding Verzenio an easy ride. I was on 150 twice daily, went down to 100 twice daily. I declined further reduction to 50 mg. Still have quite a bit of diarrhea, some cramps. I am also on Arimidex, which I am tolerating better than Letrozole. A bit of stiffness and pain in hips, and I found when I was on it with my original breast cancer that it causes depression.
Still, I am generally feeling well and delighted that this 3rd line of Rx is working for now.
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TammyCross
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I started on 150 2X a day then it all went south. I stopped for 10 days now I’m taking 1 150mg 1x per day. After I use up my Verzenio they’re going to try me on 100mg 2X per day. So far I’ve had no diarrhea on the reduced dose but I’ve started Miralax in case I’ve gone the other way. I’m also doing Faslodex so hope it’s working. I’m 73 and still a bit hunched from the previous problems in my spine so on we go! Glad you’re feeling good! I thought the same when I woke this morning. Chrisxx
I was put on Verzenio after Ibrance for the first three months. I had no idea then I could have asked her (not did she suggest lowering the Ibrance). I got way too sick on my week off.
She put on first the 150 mgs. of Verzenio (nope, crapped my pants), then the 100 mgs. (nope, too much) and then she said well I can only put you on the smallest dosage which was 50 mg. along with my falsodex injections. My cancer center in Brooklyn never use tumor markers. They said they can go up and down for so many various reasons. I never knew what they were and never asked.
I felt normal again. Not tired, no diarrhea issues and I had, as my onco said last month, a great run on it. I was on that combo (50 mg. of Verzenio) for a bit over three and a half years. So the lowest dose worked fine for me. I was not tired nor did I feel drugged. I had any any issues with the falsodex injections. that was the easiest part of it.
So try the lower dosage, she can always up you. It spread to my liver and now that tumors have grown. I had my CT scan today (six weeks earlier than usual) to see if the cancer is continuing to spread in my liver.
I cried....I wanted to stay on my verzenio and the injections bc I felt normal. Now on tamoxifen and afinitor that I hate and I am on the lowest dosage of that.
Wasn’t that wonderful that you could have 3.5 normal years?! I imagine that you would sad to leave that treatment especially because your onc thoghtful left you to it and didn’t get markers each month which is a pain. I hope that you will settle into the affinator!
I cried. Because I now realized things are changing fast. Now tumors are popping up all over my limit and growing quickly. Had CT scan Tuesday, it was on my patient portal last night, I seen my onco today.
Jaundice, black toe and fingernails, severe nausea (I will take oxys for that) pain in legs.
Anyway, after I left I forgot to ask her a question If this is that bad, what is the point. ANd if I take it and feel this bad, I am losing months, literally months feeling sick. This was her response to me today when I got home.
------------------------------------
Dear Ms. Kearns,
It’s always hard to make estimates of life expectancy because there are many unpredictable factors.
It would be logical to subtract the two months from the estimate since the tamoxifen and Afinitor didn’t seem to be helping.
However, your liver function looked near normal today, so I think we can err on the side of longer time. I would probably estimate 4-6 months from now, if the capecitabine is ineffective.Of course, there could be a complication at any time – no one can predict the future, but I’m hoping for the best.
Hope this is helpful,
_____________, MD
Associate Director
Division of Hematology/Oncology
I edited bc I realize I should not be putting her name on a board.
So that is a real good news-bad news letter. Liver function is near normal, good. You are starting on a new med, capecitabine - is that right? If so, good. She seems to be leaning toward it not working. You say you are on affinitor and having miserable side effects. Are you starting Xeloda? And that might work?
I am awaiting the delivery of it from the speciality pharmacy so she told me to stop the tamoxifen and afinitor after two months, bc my CT scan showed the cancer is still spreading in my liver. So for this week, I feel good bc I am not on any heavy duty meds but upset about starting a new drug and worrying about the side effects.
Oh dear lord no wonder you cried. I am so sorry. That must have been so sudden and horrible. I don’t think I ever want to hear guesstimates and I imagine you are the same. We keep going because we believe there is lots more in the tool kit snd we all pray for the new wonder drug to be ready when we need it. I had a fall today and I luckily got up bruised and a bit crushed and scraped. My dog ran me over and yelled so much at him. I thought if my spine got all compression fractured from this snd iwas just stuck in pain, I would just want it all to be over. That was the first time I thought of that… but I did speak to my Dr after diagnosis about death with dignity as it has just been voted to allow in Nz where we lived… I was sad that she told me she personally wouldn’t do it… she would pass me over to another Dr as it was against her beliefs. But she is the one I was going on this journey with… anyway that is all for naught because I moved to Massachusetts and they don’t allow it so I am stuck. Do you have lots of help? Hopefully a partner and one close child and friends? Do you want to talk off line? I would listen and if I could help. Where are you?
I live in NY and I am beyond upset that we are not a die with dignity state. You have no idea how upset I am. I would consider that a blessing and have so much less stress if I lived in a state. (You have to be a resident of any state that has it for at least six months).
I asked for a timeline and also how it would happen. I live alone, have no family, and I am trying to set up my own body pickup at the cheapest cost. I will not be able to have hospice at home, bc I have no family so if a hospice nurse came for 4 hours per day and I am unable to get out of bed, I would be alone.
So I will have to wait until I can't breathe, be put into a hospital (and my onco said I would probably go into a coma) and then be transported to a hospice in the Bronx where everybody there is waiting to die and I will be in diapers and lose control of my bowel movements. I also have a DNR in place. There will be nobody visiting so I will be alone.
I am so so angry that I have to go through all this when the die with dignity act would allow me to choose the time. You are lucky. I would be so much less stressed if that was an option for me. I would, without a doubt, do it.
one tumor gone (resolved) and the other tumor shrinking....yay!!! although sorry you are dealing with diarrhea and cramps from the Verzenio.....that part not so good. but you are still 'new' to verzenio and hoping those side effects smooth out over time🤞. so happy that this new med combo is working for you👏. long may it last👍
Hi there! I was started on Verzenio four months ago from Ibrance (which I was on for three years and had markers going up for two years which finally resulted in progression). My markers kept going up over the four months on Verzenio, so last Friday I was started on Fulvestrant instead of Letrozole. I had progression to the stomach, hence the change of meds, and my doctor scattered the CDK and endocrine therapy change, in hopes of not having to change both. My markers test went finally went down and we found out the day I started Fulvestrant. We decided to go ahead and change to the Fulvestrant anyway, since we think it will help tame the beast much more quickly. I have not had any side effects from Verzenio (weird, but I'm grateful for that). I have heard many people go on to lower doses of Verzenio with much success, so hopefully your body will normalize with the lower dose. They say it can take time, but the diarrhea is likely to settle down with time. Once that all settles down, hopefully you will get a much needed mental break and not feel depressed. When our bodies feel better, I think our minds follow along! Take care, wishing you healing!
The cancer center I go to told me that they do not use tumor markers since, according to this cancer center, they are not a reflection of whether or not a med is working or if it is spreading, since there can be numerous reasons why tumor markers go up so I have never known about them since day one. I just asked once I see many women on here were worried about their markers.
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