Faslodex Girls Thread 2014

Thanks Jobur, I am trying to just roll with it. I guess another liver biopsy might be a good idea anyway. Lisajo, Deanna is right, Ibrance is a very doable drug. The SE's were not bad at all. I was on for three cycles but unfortunately I had to stop because of elevated liver enzymes. But it did do me some good while I was on it with some tumor shrinkage and lower TM's. I hope to be able to possibly return to a lower dose at some time when all the enzyme stuff gets figured out. Deanna, I agree 100%, the head trips with the waiting for tests and labs is very taxing on us! Suzie, I have felt no SE's from Faslodex and the Ibrance I felt some pretty much right away but all of them got better after not too long. Best to all!

Hi--I talked to my oncologist a week ago about a similar issue. I had severe, severe pain after my 3d treatment that would not respond to 800 mg ibuprofen + norco (Tylenol and hydrocodone) on my left hip (it was pretty much debilitating). I asked the same question: why not 2 shots in the same side? He finally said that he had staggered the shots on the same side for one of his patients. So now I am going to get my 4th shot next week, just one, on the right side and another shot on the right side a week after that. The hope is that it will give my left side a chance to recover.

If anyone else is out there who had really severe pain (that is, so bad you can't function or sleep well), I'd appreciate hearing from you.

BTW, my nurse said that using a heating pad is problematic because it can make the drug get released too fast; it's supposed to be a timed release....

Had my shots on Friday, and really very little pain. I did use my heated seats in my car on the way home. Guess I should ask if that is okay. I did tell my nurse about my heated seat and she didn't say anything.

I don't hurt when I sit but when I lie down in bed or move during the night Ouch! I find that if I walk for a while right after the shots I do so much better than if I don't. BTW my last CT scan says "no definite evidence for metastatic disease" - I've been on Faslodex for 13 months.

Hi Pam, I have a PET Tuesday of next week too, if you want to share scanxiety. I would just love to hear that you are going nowhere. (I mean staying on this thread, no progression.) Good luck!

Sandy208, Congrats on that good scan! Wishing you many more.

Artist, Glad to hear those liver enzymes are down! Hope the trend continues and you can relax about your tx for a while.

I echo the best wishes for next week's scans, pajim and jobur, and best wishes also to you, Artist, that all is well with your liver tests.

Does anyone find that the soles of your feet, esp under the heel, have become very tender and painful? I mean feeling like you need lots of cushioning in your shoes as you could almost feel your bones going through your soles when you walk? Wondering if it's a SE or not (I have put on 21lbs since starting faslodex/femara though).

Aoibheann,

I did. They considered it HFS... hand foot syndrome and indeed it was. Now that I am on Xeloda, it is much worse. It is not a common side effect at all while on Ibrance. One of the research people I met with at Dana Farber was assigned to the Ibrance trials, and she reported to me that only a few other women had this side effect during the trials, so it is not included in the literature. It did not get the "required" > 1%.

It was a bit of a relief to know that I was not crazy, or the only person who was affected this way. There are lots of posts around about dealing with HFS. If you can't find them, PM me, and I will give you what little help I can offer.

*susan*

Thanks for the good wishes on next weeks scan.

Deanna, Sorry about the low blood counts, but at least now you know you have good reason for your fatigue. Hoping you will get good news from Friday's scan. Do you have to wait long to for results?

Aoibheann, Sorry to hear you are experiencing HFS. Hope that now that you know what it is you can find some thing to help.

Susan, how is Xeloda treating you so far? I was hoping you might have minimal se's as on this tx as Ibrance gave you such a bad time. Hope the HFS is not too bad.

Artist, Enjoy having that empty nest refilled! You and your girls can spoil each other.

Susan, "special life additions" - love it! Glad to hear you are feeling better on this tx.

Aoib, Interesting how many different approaches are taken among Oncs. I think I will get to the point that I have to try a larger center as my choices in this small town are VERY limited and mine seems to follow a very specific protocol so far. I hope she might think a little outside of the box when the time comes to expand my options. I'm so glad to hear you are stable and hope the SE's are quite tolerable! Good luck on results Pam!

Hello, it's been a long time since I have posted anything but having been reading other's posts. I see that there have been some posting about the sore lumps and other side effects. I have been on the shots for 3 years and I am NED. My nurse told me last month that I have ALOT of scar tissue and this time she side I had a lump on the left side. It seems that they are getting more painful more than likely from the scar tissue. For those of you who are experiencing the sore lumps how long do they usually last or do they ever go away? I have used a heating pad and my nurse has never said not to use it but am now wondering since I have seen others post that they were told it's not a good idea. Do any of you use an icepack?

I've been told by my onc and PCP not to use ice or heat on the site(s) but I know that if I go for a walk after treatment things are really tolerable - I stopped the walk in December because the day of injections it was icy and I was most uncomfortable, same in January, this last time I walked and things are much better. It's good to come here for help but think in this case you should talk to your onc and onc nurse - they are the experts (we hope).

Had my shots Monday and still have 2 large lumps on both sides of my butt. The shots were warm. Any other recommendations?