Progression - Scared

WorkingMom10 · February 2018

Just got my latest 3 month scan results yesterday and unfortunately, the news was not good. There was new activity in one lymph node under my armpit, in my midsection and in two areas on my spine. The largest growth had increased by .3 cm I think. I have been on tamoxifen only for the last 10 months since I finished 6 months of chemo (taxol once a week). My onc said my lungs and liver are still clear, however, the tamoxifen is no longer working. She referred me to another doctor for a CDK 46 clinical trial. I was told that all patients get the medicine and there was one of these CDK 46 drugs she thought would benefit me. I see the clinical trial doctor next week. I'm really scared right now. I thought she would put me on Ibrance, but she wants me to try this first. Does anyone have any experience with this type of clinical trial? If so, please let me know how it went and if it worked for you. Thank you!

pajim · February 2018

Hi WorkingMom, Ibrance IS a CDK4/6 inhibitor. It may be that your doctor is trying to get you into a trial with a different medicine plus Ibrance, or to provide help if your insurance has co=pays and the like.

There are three sister drugs. All CDK4/6 inhibitors. I'm sorry I don't know all the street names, but they are palbociclib (Ibrance), ribociclib (Kisquali?) and abemaciclib. Yes the usual 'next therapy' would be an aromatase inhibitor (Femara?) and a CDK4/6 inhibitor.

I've been in two trials. There are a lot of clinic visits in the early days and some additional paperwork. But it comes with extra nurses and people to call with problems, etc. Before you agree to be in the trial they'll tell you exactly what you would need to do. Read the consent form and ask all your questions. You do not have to agree. Did you and your onc discuss what the treatment should/would be if you don't want to be in the trial?

There's nothing to be afraid of in being in a trial. Did I mention you don't have to agree to be in it? You've only agreed to listen to them. Many women want to be in trials because you get to try the latest and newest medicines. Neither of my trials involved new medicines, just new combinations. I washed out of the second one due to side-effects. Some experiments don't work. Lets just say that Aromasin, Afinitor and Ibrance shouldn't all be given together. But you don't know until you try! And I was willing to give it a try.

Could part of what's bothering you be the fear that comes with progression? My first progression felt awful. My first treatment lasted 3 years. Just when I'd convinced myself the cancer was never going to grow. . .WHAMO! Ouch that hurt.

NettaGER · February 2018

Working mom: Sorry that Tamoxifen is no longer doing its job. But maybe I can at least take your fear on the clinical trial offered to you:

Ìbrance (active substance Palbociclib) is one of 3 currently approved CDK 4/6 inhibitors (the other 2 are Ribociclib and Abemaciclib). If you take place in a clinical trial and every patient gets the CDK 4/6 inhibitor (no placebo arm), you should be fine. As far as I understand, Palbo and Ribo are quite similar, while Abema is a bit different in its action mode and side effects.

WorkingMom10 · February 2018

Thank you both for your replies! I think my main fear is from the progression. I was on tamoxifen for 10 months and went into my last appointment with my onc thinking that I would still be NED and was really shocked when that wasn't the case. She also told me to stop the tamoxifen since it had to be out of my system for a month prior to starting the trial. That freaked me out as well. I have an appointment with the clinical trial onc on Feb 28th. I'm really hopeful that this will work and your responses give me hope that it will. My onc said now is a good time to do a clinical trial as my mets are only in bone and lymph nodes. I'll see what the new doctor says and hopefully their proposed course of treatment will keep me NED a lot longer.

pajim · February 2018

Don't worry about the washout period. Yes it's a bit scary but trials insist on one. They want to be sure that you are starting clean. You've been more than year on tamoxifen so obviously your cancer isn't explosive. It really won't matter if it grows a bit in a month. The new drugs will kill it flat. Think of it like a vacation! No hot flashes or joint aches [or whatever you have] for a month, whee!!!

Can you tell I try to look on the bright side of life?

And remember, you don't have to agree to the trial. But you should listen. For all of what I say, I recommend trials. I would and will do another. But you shouldn't feel coerced.

Hang in there and I hope the meeting with the trial group goes well.

WorkingMom10 · February 2018

Pajim,

Thank you so much for your reply! I really feel a lot more at peace now. My biggest issue was just dealing with the fact that the cancer had progressed even so slightly. Tamoxifen worked for me for almost a year. I really like the idea of a vacation from the hot flashes! I hadn't looked at it that way.

I will definitely listen to what the new oncologist has to say about the trial. My current onc seemed optimistic that it would work for me. Thank you again for your encouragement!

WorkingMom10 · March 2018

I agreed to do the Abemaciclib with immunotherapy clinical trial starting on 15 March. My research onc was optimistic that it would work for me and she said the immunotherapy is similar to what helped President Carter get into remission with his cancer. I've heard a lot about digestive issues with this drug, but also heard good results from those that are on it. Thank you for the encouragement!

azs40 · March 2018

working mom ... please keep us posted on how you're doing on the new treatment. I'm really hopeful that an immunotherapy drug will make a big impact on all of us. Wishing you luck and a great response.

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Progression - Scared

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