Hi ladies I so appreciate the wonderful information and encouragement from this site
I have a new question :for those of you who are using faslodex wondering how long it took for it to work -I have been on it for 4 months with some progression I’d read some place that it can take longer for it to start working
Didn’t have any problems with side effects until this round-sick for several days severe body aches chills sweats and chest ache
Feel better today -has anyone experiences this -ever hard to breath
That’s the one I get most anxious about
Thankyou
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marleneb56
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Are you on something besides faslodex? I was switched from letrozole to faslodex in September. Also on Ibrance. My February scans were better. I feel much better on faslodex than letrozole, except for the discomfort in my bum and the long drive to and from the cancer center. Do you think those symptoms could be something non Cancer related?
Hi, Marlene. Glad you’re feeling better today. Chills, sweats, ache and fever may be coincidental and not causal. I’ve not had that set of reactions in the 9 cycles I’ve had with Faslodex/Ibrance/Xgeva bundle. Hope that set of reactions does not return.
Yes...after my first 3 months my bone mets had advanced; after 6 months I was pretty stable; now at 9 months I am stable with no progression and even regression of liver lesions. It has taken our bodies a while to ramp up to grow these cancers, so sometimes we need to be patient and allow the new protocols to take effect!
Take heart...we all intend to be around for a very long time yet as we learn to manage this “chronic disease.”
Glad you wrote what you did - I have been o Ibrance and faslodex since December - my tumor markers initially went down and now slowly creeping up - having more bone pain at times - my mets are in my bone only - They have scheduled me for a CT scan and bone scan in early May to see if there is progression - So if I am reading you correctly - you initially continued to have progression but then it has subsided - so your oncologist just decided to ride it out ? This is consider great - Can you expound on this a little more - I really don't want to come off these drugs if there is some hope down the line.
Yes- He felt that some progression in the beginning is to be expected before the cancer activity can be corralled. I also had an “Ibrance holiday” one cycle, which means i was off it for 4weeks. So, for now, this holding the line and I will continue...until it doesn’t.
Hi Marlene! I've been on Faslodex (+ ibrance) - as a second-line treatment - for 7 months. My results to date are mixed, but my doc didn't even order a scan until 6 months in. When I was on Letrezole (+ ibrance) as a first-line treatment it took 9 months for things to stabilize after a lot of progression at 6 months. My improvement continued, slowly, and peaked at 2 years in, i.e. "no medically significant disease". So unless there's a compelling reason to move onto the next treatment -- knowing it's unlikely you can go back -- I'd stay the course and perhaps tolerate a bit of unsettling progression, looking at the long-term..
thanks for this tip - I am going to discuss this with my oncologist next week - Don't want to bail on these drugs if there is a chance they will work down the line
For some people, 2 Faslodex shots are not enough to saturate the cancer cells. Scientists are testing 3 shots to see if its any more effective than 2. Interestingly enough, the original dose was 1 injection. For side effects, you may be getting an allergic reaction. Tell your doctor. I take Benedryl an hour before infusion and it’s helped with the hives I was getting. Also, tumors can mutate over time and develop treatment resistance. Yours may be at that point. Again, talk with your doctor. Combining another agent with Faslodex may be a good bet. Or even looking into clinical trials for Faslodex or estrogen-therapy resistant tumors might be good. Take care and I hope your symptoms improve.
If your tumor markers are going up some, that can be from what's called "flare" and just means that dying cancer cells from the new drug are confounding the blood work due to the difference between dying cells and not dying cells can be difficult to see in blood work. I never had scans before 3 months on a different med and my onc said that even 3 months can be too early to see good results from hormonal treatment. Unless you are in liver failure or some other emergency type situation, you have plenty of time to wait to see if the Faslodex is working. For some of us, when given second line, it can work longer than the first drug did! That was true for me. I hope you get good results from it.
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