I haven't written for a while as busy getting our new home in order and taming the jungle of a garden. I'm loving living in the Scottish Highlands with so much to explore.I've been stable for some time on letrozole and ibrance 125mg. I have a lovely oncologist in Inverness and support from the Macmillan nurses has been second to none since I arrived in Scotland.
On Thursday I met my oncologist face to face. She told me there had been a spot in the mammary section of my CT scan since October and it was now 1.4 cm, so it triggered some action. Noone had mentioned this before but perhaps ignorance is bliss.
So now after 3 years 3 months I'm moving to Faslodex instead of letrozole. Let's hope I get another three years! I'm feeling really well and apparently my bones are stable and no other organs show anything untoward. It knocked me sideways but onwards and upwards, too much to do to dwell on it, and we're making the most of lots of lovely days out with Ruby our collie.
Interested in any comments about Faslodex, although I had none of the suggested bad side effects for letrozole or palbociclib.
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Beryl71
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I made the switch from Letrozole to Faslodex a year ago. same as you, I had a little progression and my oncologist recommended. and like Linda, I found the injections very tolerable. let's put it this way....I didn't feel any different after making the switch👍.
Thanks and to others who replied. I rather hoped I might be able to tie in with my blood test and palbo prescription otherwise it will tie me down making holidays difficult! This hospital's protocol is to only issue palbo once a month with blood test every time. My last one stretched to three months with no interim blood test.
Hi Beryl. So good on you for doing well so far, and I hope your next treatment is as good at keeping you stable. I’ve just found out that I’m going to be put on to another, (2nd line) of treatment soon too. After 5 years on similar to you. (Ibrance and Anastrozole)
I don’t know yet what my next treatment will be, but let’s hope we travel well for some time yet.
Important things to know: injections come from the pharmacy out of cold storage so TY hey have to sit til they reach room temp or can be warmed up by holding in the hand or under an armpit; to avoid nerve injury injections have to be given high on the hip Google faslodex injection pictures to see where - don't be afraid to discuss/show pic TY ure to nurse; lastly the medicine is very thick it needs to be given slowly , at least 2 minutes, tell the nurse you want to help by timing her - you can tell her when 30 second intervals are up. Also, better for you if hip is relaxed so if your standing - bend knees slightly, tun toes inward, raise leg of hip which is receiving injection.
You will be fine! Wishing you years of progression free reports. Happy you are living in such a lovely place and feel good about your caregivers. 🌺❤️🌺
Your new home sounds lovely and your busyness worthwhile! I'm a lonng long timer--over 19 years with MBC and have done alot of reading about bc and mbc and attended many conferences. I've met quite a few women who got longer from Faslodex than Letrozole! I got almost 5 years from first line treatmentLetrozole and over 9 years from Faslodex. I found Faslodex easy to be on! I agree that the Faslodex needs to be warmed, for comfort's sake, and for me, it worked to just take my weight off the side being injected. I'd lean a bit and raise the leg just enough to get weight off by putting just my toes on the floor on that side. One of the things I liked the most was just having a monthly shot rather than having to takke a pill every day, reminding me of the cancer! lol I hope you'll do really well!
Hi such an expiring story. Please if you don't mind sharing your secret to diet and meds to last 19 years. Thank you in advance for letting us know that 19 years is a possibility.
I was on Faslodex for 6 years. Towards the end I was getting huge lumps on both sides. They said it was scar tissue, but they are gone now. I would recommend self massaging the site to keep the product and muscle moving. Otherwise, besides the needle prick, no problems. Glad you are having a lovely time in Scotland! Erskine clan here!
You're doing great! The stuff is thick so make sure they properly bring it to room temperature before injection. Expect them to inject each side over 1-2 mins, it decreases any discomfort and it seems to help it disperse better when they do it right.
If you develop itchiness take a Claritin, and that should help a lot to ease it, one of the nurses told me that trick. Lastly, you'll have a better chance of not having discomfort in the injection area if you climb some stairs, or do squats or similar (in other words use your buttock muscles!), it seems to make it disperse better. If you find you get a big hard lump at the site then just massage it with something firm, a foam roller, or even a table edge lol. It's really not so bad but these things will help
Hello, I was diagnosed with Stage 4 breast cancer two years ago. I was on IBrance and Letrazole for almost two years. In March, a couple new spots showed up on a couple lymph nodes so my oncologist switched me to Kisqali (ribociclib) and faslodex. The first two months, my joints ached, but now I’m doing fine. Each month, I go into Dana Farber and get two shots of Faslodex. As long as I put ice packs on right away, I’m fine. It’s just sore at the injection spots for about 48 hours, not bad. Good luck. I’ll be thinking of you.
I was on monthly Lupron shots and a daily Letrozole pill for six years. For five of those years, there was no evidence of disease. Last Summer, a new metastasis on my iliac bone appeared on my scans. My doctor switched me to monthly fulvestrant (Faslodex) injections along with the Lupron. A Zometa infusion every three months was also added to treat the bone met in addition to the osteoporosis caused by the hormone therapy.
I have a lot fewer side effects with the monthly fulvestrant injections than I did taking a daily Letrozole pill. My first set of scans in April showed a response to treatment. I’m happy it’s working and would like to stay on this line of treatment for as long as possible.
When you go for you fulvestrant, please note that it is less painful if you lie on your side for the injections. If there isn’t an exam table to lie on, you can recline an infusion chair all the way back and put the foot rest all the way up. This way, there’s less weight on the leg and it’s easy for the nurse to sit on a stool next to you and administer the injection. Most nurses try to get the patient to stand, but there are alternative positions, if you ask and are knowledgeable about working together.
Here is a head's up. After a couple years on Fulvestrant I had reactions to some--once a big red spot and another time brain fog for about two weeks. Then a nurse told me they changed from brand name to generics. I spoke with the infusion center pharmacist and found they switched generics every time purchasing ordered more. I got him to tell me which brands I had received. Made an Excel log of it vs symptoms and asked to get a brand that had agreed with me. After trying letrozole for awhile I am now back on Faslodex--the AstraZeneca brand name. It so much easier to tolerate I can hardly believe it! My insurance will pay for it--so maybe this is a benefit we in the US can get. Just pay attention to what they give you--I ask for the box or check the syringe labels. And anything that is at room temp contains preservatives--and they are hard for a lot of us to tolerate. You can find what is in each generic by searching on-line and comparing to AstraZeneca. Best to you! Kay
Hi Beryl, it is so lovely to hear from you and think of you with Ruby in your new house… Faslodex is a good drug and never caused me any hassle except for the pinch. Hope you will get a few more years! I will reach out to our friend Martha’s Vineyard to let her know how well settled in your are.. and sounds like you are loving life. A beacon for us all to live life fully.
also if anyone reads this and needs 4x of Faslodex I have it in my fridge in Massachusetts.. it needs to be kept refrigerated. I hate the idea of throwing them away.. they expire inv2024.
I was diagnosed with MBC in my spine and lungs in 2018. I began with Ibrance and Faslodex and switched to Exemestane a year later. This was 5 years ago. I have had no recurrence. I looked at my Labs. Anything I was below normal on I researched how to become normal. I focused on my diet. I needed to eat a lot of protein fruits and veggies .I feel fine. My cancer marker is in the teens. I ride a bike or do other exercises every day. I also travel. Try to focus on doing things that make you feel better. That is my key to a better life.
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