Faslodex Girls Thread 2014

Thanks, Tina. I'm hoping the nausea is just a phase and the constipation will end when I'm on once a month shots. Both are unusual for me.

Thank you!

Kaption, the same thing is happening to me now with the tumur markers. I just started the monthly faslodex on wed and the ca27-39 from that visit is up higher than its ever been. 197. hmmmmmm. after my first month on ibrance/faslodex, it went down by only 1, but at least not up! Now this is only one month later and right back up again. I have to try to concentrate at work so i will take half an ativan. I worry about telling my parents. they wait on pins and needles for that number and I hate it when I have to tell them it's up.

I don't have an appt for a scan yet. You could get set up with a good Dr in FL so you don't have to worry when you're down there. My parents do the samne thing. We have a trailer at ORO near four corners if that sounds familiar. Shands University of FL is an excellent hospital. I've been to the one in Gainesville and there's another one in Jacksonville. The radoncs there are giving sbrt to limited mets. They're are trying to redifine what is incurable with met cancer. My mom is worried now and I'm irritated that I have had one good treatment (letrozole) and the next 2 seem to be failures. Hopefully it is the tumor dying reaction. *sighhhhh*

I went to the Duke Cancer Center recently for an evaluation. The oncologist I saw told me they don't run markers. There are too many instances of a marker being a false positive (or elevation) or false negative. They don't want marker numbers to dictate treatment. But for me, if my onco had not run a marker, I would have received treatment much later.

hi everyone. Zarovka started a new thread in the stage 4 forums titled how many are we 2016. She started this thread last month. Z is attempting to count the number of metsters posting or lurking on our stage 4 forums. We are both thinking that folks possibly have missed the thread because they respond to threads only marked as their favorites. If you don't mind bumping over to that thread if you have not already it would be really appreciated.

Thanks so much, Mary Anne

A question for those who have been on Faslodex a while. (I'm on it & xgeva only) I just started my monthly schedule. How flexible are MOs on the shot schedule? If I am out of town a month, can the shots be delayed a week?

Kaption, I have delayed my Fas shots a couple of times by a week and once my MO made me take a break for an additional 2 weeks. Sometimes insurance likes to dictate the schedule, but I've been able to work around it. So yes, it can be flexible and your MO will most likely agree.

Hi Aurora,

There are a variety of patient assistance fund programs for different drugs that aren't fully covered by Medicare.

Begin at the AstraZeneca website:

AZ&Me™ Prescription Savings program for people with Medicare Part D

• AstraZeneca medicines provided at no cost - review the list of medicines available through this program - Faslodex is on the list
• There is NO cost to sign up for the program
• Once enrolled, you remain enrolled for the remainder of the calendar year. You may reapply the following calendar year
• Medicines are mailed to the patient's home or physician's office
• Patient, physician, or caregiver can request refills

Click here to find out if you may be eligible for the program.

In addition to the programs offered by AstraZeneca, other organizations also offer progams that make medicines more accessible for people who need assistance. Learn more about additional programs offered by AstraZeneca and other organizations.

https://www.astrazeneca-us.com/medicines/Affordabi...

Do let us know how this goes for you...it's a big hit on your pocket book.

Also, there is a very long and often winding conversation on patient financial assistance at https://www.smartpatients.com/conversations/18013-...

You'll need to enroll in Smart Patients to access it, but it's invaluable. You'll need to scan the posts, but there are lots of tips for financially surviving cancer and other expensive diseases.

I'm surprised you don't have a supplemental plan, even Medicaid, to cover additional costs. But that's another conversation.

Healing regards, Stephanie

Aurora, so glad for your good news on all fronts!

Saw my MO for the first time since starting Faslodex. (Been seeing the NP for my 1st 3 shots)

We talked about my all time high TM number from last time. She said we would ignore those numbers for now-talking about the lag between treatment and response, etc. Scan is scheduled for August 30 and that will give better information.

I asked about the "tumors flare" idea discussed here and other places. She said "it has been reported, but happensless often with bc. More often happens when treating prostate cancer."

To those who saw my post about swelling under my knee- of course is was not swollen at all yesterday! But I described it, she examined me and felt sure it was a muscle strain. Of course, it was swollen last night after I'd walked a bit. I agree that it's not a blood clot- just muscle.

Overall, good visit and I told her I feel SO much better off of Ibrance. I hope this is the treatment for me for many years!

kaption,

Yay for good appointments!

As a follow up to my 3 weeks of waiting for a scan to see if my TMs are accurate and trying to tell us something...

My story is that I was originally HER2 positive-but barely and each biopsy was lower. My first treatment (with Taxol) was Perjetta and Herceptin. When that failed, I had another biopsy (in preparation for a trial) and was dx HER2 negative. I know your cells can go back and forth, and I know being borderline can be a challenge. I do not know enough about HER2, and plan to ask for questions- especially if the scan is not good news.

Anyway, have any of you had this borderline issue? And is there a discussion board about it? I saw one for HER2 positive, but did not dig around in it.

Thanks, and I'll keep looking.

Fortunately I do have a trip coming up to distract me for a few days!

Thanks, Deb. It's nice to know another border-liner. If my next scan shows some progression, I'm definitely asking for another biopsy if possible.

I'm bone only also. My last biopsy came from my left hip. For better or worse it can be hard to find a spot large enough.

Scan is August 30. Hoping it doesn't match my rising TMs.

jbrown- I recently transferred my care to Duke Cancer Center and my onco also told me she doesn't do TM testing because it isn't reliable. Was a bit disappointed to hear this. Overall, I'm very satisfied with the care at Duke, but my previous onco did monthly tm testing that always seemed to be spot on.

Heidi,

Thank you! That is reassuring! TMs have been pretty accurate throughout my almost 3 years of treatment. But my MO always reminds me it's scans and pain that are more important. Unfortunately my pain has been somewhat worse the past 2 weeks. But, I have been traveling and I'm sure that is a factor.

I do think there can be a treatment lag going on here. I'll know in two weeks.

Thank you so much for the reassurance.