Got my results ... the Letrozole has stopped working after 10 months. And the cancer in my bones has increased - a lot (twice as much In most bones). I was shocked because I’m feeling better
Switching to Faslodex and Ibrance. Starting with 3 rounds in the first month 😳
If you are taking Faslodex, please let me know how it is for you.
It’s a hard day for me ... Thank goodness for this site - it’s like a huge hug 🤗
Thank you so much ... I never realized how great it feels to have a group to reach out to ... who will really understand. Thank you ♥️♥️
Hello Terilyn. I have been on Faslodex and Ibrance since I was diagnosed in March 2018 with mets to lungs, mediastinal and hilar lymph nodes. Accepting the diagnosis was not easy for me then and I know that life is never going to be easy. But we have to find our own joy in between scans and blood tests and live to the max while we can. I’ve been on Faslodex for 15 cycles and in combination with Ibrance it has kept me stable for 11 months now. Although I am a Catholic and have accepted God’s will, each and every scan and blood test seems like the Agony In Gethsemane. I doubt if the fear will ever go away.
Tumor markers, though the doctors don’t put a lot of weight on it, have worked for me. It was my rising CEA that made my onc order a scan and where I was diagnosed with MBC. When I started the Ibrance/Faslodex, my CA15-3 and CEA started going down in very small amounts but would also go up in small amounts. Now, my latest blood test results I find weird. The CA15-3 dropped by 6 points while the CEA went up by over 1 point. My CT scan came back with “no change” though for which I am very thankful.
Still on tumor markers, I wonder if there is a correlation to my taking Graviola supplements for the past 3 months. One of us in this group said that Graviola lowered her CA15-3 and I thought I would try it too. Well, my CA15-3 did come down by 6 points. But one of us in this group also said to watch the platelets since Graviola can make it go down. That came true for me as well. I am now taking Graviola every other day to see what happens. But please ask your onc if you can take it.
Ibrance/Faslodex has been very good for me. Except for low WBC and thinning hair, I am okay and go to work everyday. I am still able to travel (my onc is more than 200 km drive from where I live) and will continue to do so while I can. Faslodex shots are much harder for me because my butt apparently has not got much fat or muscle according to the nurse. I still have lumps which have lasted more than 2 months so finding new places to inject is becoming a challenge.
This is already a really long post so I will stop here.
Have faith!
Maria
Thank you Maria ♥️ Yes I am really getting a lesson in faith for sure! I am a little nervous about the actual shots of The Faslodex although I’m usually pretty good with needles - first injections next Thursday ... hoping/praying this works a little longer than the Letrozole ♥️
Hey Terilyn12,
I’m so sorry about your bad news, I always find these set backs tend to leave you feeling isolated. But you are not alone.
As the girls said, the letrozole combo was just the first rung on a very long treatment ladder. There are so many options out there for MBC at the minute, with more coming on board all the time. The future for all of us has never looked so bright.
Thinking of you x
Thank you ♥️♥️ .... I’m ready to fight with my new meds!!
Hey Terilyn, am so sorry for your bad news. I’m on Faslodex and really don’t find the injections too bad at all. You just need a good doctor or nurse to do them really slowly. I’ve been on Ibrance too and am switching to the lower dose now due to fatigue and upset stomach. Though I didn’t tolerate Letrozole very well either. Letrozole also quit working for my mother-in-law and she now has bone mets and they are switching her to Ibrance and Faslodex too. Heard lots of positive results with this combo so trust it’s a good one. Keep your chin up.
Thank you so much Charlie_99. I needed to hear from someone who has had the same ♥️♥️♥️
Hi. Letrozole stopped working for me also at around the 10th month mark. I was also shocked as I had good results initially from it. I am now on Faslodex and Ibrance. No side effects besides fatigue and sometimes acheyness which a regular aspirin takes care of. I am able to work full time. I need too for the insurance although some days I would prefer to sleep! Your onc will put you in the right direction with treatment. Stay positive.
Thank you!! Good to hear Letrozole stopped at 10 months for someone else 😢 ... when I started, my dr said should be good for 5 years so I was really suprised
Yes. I didn't expect to have a short run with letrozole either especially when it was working very well in the beginning. Bone Mets had disappeared and boob tumor had shrunk alot!!! Well, after the diagnosis I tend to roll with the punches and just ask what is next? Keep us posted on how you are. Faith
I'm sorry to hear about your setback. I've been on Faslodex for 5 years and although the shot itself can be painful, it has been quite good for me. So, when I get it, I celebrate the pain as it is less painful than no meds and I've really enjoyed the results!
Terilyn, I am so sorry to hear the results but it sounds like your oncologist is on top of it! Like someone else said we have all been in your boat or we will be. It's hardest to hear news like that when we dont feel sick. My heart goes out to you and hope the new drug combo brings positive results. Know that we are all here for you. Hugs!!
I am sorry, it is hard, I am taking Falsodex since las September 2018 I am tolerating this medication really good only soreness at the site of the injection I am taking with Verzenio I used to taking with Ibrance
Take care and God bless you
Hi, PLASEM, what what made the determination to swith from Ibrance to Verzeno?
Ibrance stopped working after 16 months new sites of bone cancer and my oncologist said that Verzenio is stronger and the side effects are diarrhea and fatigue
Thank you, I also read somewhere that Verzenio reaches brain better if you have brain mets. I notice they're advertising on TV and my husband was all excited that there was a new drug out there. Wonder if you can take varying doses on this med like you apparently can on Ibrance to ease the side effects. I'm on Ribocliclib and usually experience diarrhea for one day during a cycle. Good luch and keep us informed how Verzenio is working for you.
God bless you, Terilyn, and hang in there! I'm on the Letrozole/Ibrance combo. From what I have read about your new combo, it has been very successful for many patients! The Ibrance is like the "clean up" guy in combo with a primary drug. Is there any reason they didn't put you on Ibrance (with letro) from the get go? Make sure you read about how to position yourself when you get Faslodex injection. Sounds like much less pain when you stand on opposite leg from the buttock that is the injection site; might want to ask about this with nurse; also ask that it be room temp. Many prayers for your new treatment! XXOO Linda
Thank you Linda. I am on Ibrance and was from the start - along with the Letrozole (that wasn’t very clear 😆). I am staying with the Ibrance just switching out the Letrozole. ♥️ ...
I hope the new drugs work wonders for you. Were you taking Letrozole all by itself ?
Ibrance and Letrozole - staying on the Ibrance ♥️
Letrozole stopped working for me too. Cancer has spread to my liver. Just completed 5 rounds of cyber knife radiation and taking Verzenio (the next generation of CDK 4/6 inhibitors) and getting Faslodex and Xgeva injections. Faslodex injections are a piece of cake for me. Takes a while to inject, but little to no pain. So far, no side effects.
Best to you!
So many talk about the pain of the injections .. any insight on how you mAke them more bearable? Prayers for you for sure ♥️
I was a nervous wreck going in for my first Faslodex shots in February....thank God for all the good advice here! I'm pretty thin and was worried about where they were going to put them but I've had very little pain with the shots and no side effects except for an occasional mini hot flash. Here are a few hints I learned from all the pros here and from experience...hope it helps!
I have an electric heating pad that I can plug into the car lighter and sit on it to and from the hospital if I need it. I used it the first two times, but didn't need it for the more recent shots.
I ask the nurse to make sure the shots are nice and warmed up before being injected...I don't mind waiting an extra 15 minutes.
Last time she wrapped them in warm blankets for 10 minutes.
If they are injecting on the right, I stand on just the left leg and let the right leg/glutes hang as relaxed as possible. Same on the other side. Try not to have tension in your leg/glute during the injection.
I ask the nurse to do it very slowly. The one last week took about 2 minutes on each side...that was a lot of small talk but worth it!
I'd also read a suggestion to take an Ibuprofen a few hours before getting the shots and I did that the first time, but haven't bothered since then.
I always try to keep moving and take a walk when I get home. Massaging the shot area before and after can help too. So can a nice warm bath if you are sore.
The good news is, cancer markers are already dropping again. Yours will too - healing happens!
I am sorry to hear you'll be changing treatments, but there is every reason to anticipate a good response from Faslodex and Ibrance!
MacroMom gave some wonderful tips about Faslodex injections, and here's a list from my book. Wishing you many years of success on this combination!
•Warm the syringes under your armpits for several minutes until the vaccine reaches body temperature, which makes the shots easier to administer.
•Ask the nurse to gently massage the injection sites before the injections.
•Have the nurse put numbing spray on the area before injecting the vaccine
•Ensure that the nurse will use the “Z-track” method for the injections to prevent leakage of the serum into the subcutaneous tissue. Z-track instructions are located at: healthline.com/health/z-tra...
•Make sure the nurse will inject the vaccine slowly (1 – 2 minutes per injection)
•Ensure that there is no weight on the area being injected by standing with your weight on the opposite foot or lying down on your stomach and pointing your toes inward (most patients prefer this method).
•After the injection, apply ice packs or heat pads to the area (some patients drive home with the car seat heater turned on), drink lots of water, walk as much as possible, and avoid sitting for long periods of time.
Wonderful - very glad to hear it!
I liked Faslodex - no side effects for me except a little soreness day after
Recent scan concerning
PET Results
Result pet scan
PET scan results
