Abemaciclib and Provera

Shakespeare

Hi @hellosunrise and @wendy55. I was just about to reply to your post Wendy on the general site which I only recently joined but when my membership of this metastatic group came through and I saw @hellosunrise sunrise's post  I thought I should reply to you both. My name is Penny and I have been on Abemaciclib for just over 3 months. On the 200mg dose the diarrhoea was terrible in spite of the Gastrostop and I landed in hospital with dehydration and in Atrial fibrillation and needed IV fluids overnight. The 150mg was a bit easier and I used the gastrostop more earnestly but it still got to the point where I had no appetite, was losing weight, anaemic and neutrophils down to .7. So I had another break from treatment then was started on 100mg 5 weeks ago. The diarrhoea is no longer a problem and my neutrophils are low but ok. However with all the breaks in treatment the visible tumours on my chest wall seemed to be increasing and I asked for a review by a radiation oncologist, but he said that I couldn't tolerate a third round. So I was about to start on PROVERA which you were interested in Wendy. I gather that as a Progestin it interferes with the action of Oestrogen somehow. However in the last 2 weeks I think the 100mg dose is starting to work and we are going to give it a bit longer before we give up and start the Provera. I am lucky to have visible tumours that help to measure my disease (as well as bony mets) and they have been more useful than the cancer markers on the whole. 
You wondered why I was able to get access to the Ribociclib Wendy in spite of all my treatment and I am sorry I can't tell you why. I had to have it with the Faslodex in spite of having progressed on that when I had it alone self funded for 3 months. So you know @hellosunrise, I am 12+ years and hoping for some more so hang in there. I have put my profile up on the general site but will add my story to this metastatic group. As Wendy says there are a lot of drugs out there and they often seem to be going back to older drugs like the Provera and even Tamoxifen for those of us who have had a lot of hormone and chemo treatment. Before they came up with the Provera for after I give up on Abema I had been told I would probably be started on Liposomal Doxorubicin chemo.   

Jenny_BCNA

@Shakespeare sending you a private message.

wendy55

Hi @Shakespeare,
thanks for the detailed post about your treatments and yes like you I had quite a time of it on the abemaciclib I was on gastrostop the whole time and it took several months before I would venture out side, however I just soldiered on as you do, I see my oncologist next Monday just prior to chemo to see where things are and where to from here, I am hoping that the eribulin will continue to work,I have 2 tumours in my liver,initially I had 7 so there has been some good work done by the treatments,we had talked about clinical trials and studies after the eribulin and one of them was an injection of doxyrubicin into my liver tumours followed by a small infusion of doxy into my port this would happen for 5 days a week then have 3 weeks off, so it seems that there are still treatments out there although this was part of a clinical trial,I guess all we can do is keep going, my mind and spirit are strong, its just my body lets me down at times,as I am sure yours does, please keep in contact,this is the first time I have been in contact with someone who has had almost as many treatments as I have,

wendy

arpie

@Shakespeare- Just so you know -  this isn't the 'private' Mets Group - this one is open to members and the public to read ....
Gastro is such a horrible side effect of so many of the chemos - Hubby's Gastrostop script was for over 100 tablets - you can get nice peppermint tasting ones - but on PBS you can only get the capsules!  I am surprised they can't include the gastrostop (or similar) built into the actual infusion!  Hubby also ended up in hospital with dehydration & put on fluids and the chronic gastro was from his 'latest' chemo  & was using Gastrostop all the time . ... & then he had an infection ...
The Onc then recently prescribed plain old Codeine tablets & that seems to 'bind him up' & he is almost back normal motions ....  First time since 1st Dec!   I was just giving him one tablet at night & morning, then night only & just now, none!  The other day, he actually became constipated - and that was almost as bad as having the trots!  grr

take care xx

hellosunrise

Hi @Shakespeare, thanks for sharing your experience with Abemaciclib. I'm sticking with my current treatment for the time being. Better the devil you know sometimes!!